Christmas Is Upon Us

The kids are enjoying their break from school so far. Alex will begin a short break from therapy during the holidays as well until after the new year, as we enjoy celebrating with family and traveling a bit. Alex is always so cooperative when I work with him on his speech in our every day setting. I almost feel he's getting bits and pieces of therapy all day even without sitting down and having a game plan, so I shouldn't be so worried about a break in therapy, right? He's on such a roll right now and having a terrific spurt in his speech that I just hope a break won't interrupt that.

Today we did a great activity with our Easy Does It for Apraxia - Preschool materials. I took a picture of a postal mailbox and glued it to a piece of paper around the edges so that it formed sort of a pocket. We cut the door so that it opened and we could slide "mail" inside. We used small rectangular shaped green and red paper (Alex's Christmas cards to his friends, ha) and glued "stamps" on each one, practicing "pu-t on" and "pu-sh". When the letters were all ready to send, we would practice saying "o-pe-n" and "pu-t in" or "go in m-ail". Alex did so well and he loved this activity.

I look forward to enjoying the kids opening their gifts, three each, representing the gifts given to Jesus by the three wise men. This year both of the kids are really into books, so they both got books, board games that are age appropriate, and each will get a toy. Alex will get something Thomas the Train, of course, and Sarah will get something Barbie princess. I am hosting my family's Christmas this year, complete with a birthday cake for Jesus. The kids are going to love it! I have very much enjoyed the Christmas season this year. I can't believe Christmas is already upon us! Merry Christmas! I look forward to sharing the progress Alex will make in the new year!

He can say his name!

Since the day Alex was born, he has been affectionately called "Bubba" by his big sister as well as all of my family and my husband's family. Ok, so I've been quite guilty of this myself. I've even caught myself saying "Bubba (last name)!" when he was in trouble. Yeah, this is definitely a story for the baby book. Anyway, just after his third birthday Alex quickly learned how to spell his name by sight, by spelling it out loud "Ay, El, Eee, Kek" and even writing it since just after his third birthday. However, just after he would spell his name, he would say "Bubba" as if that is what he just spelled. I get so tickled at him. Even though Alex can spell his name easily, he has struggled with putting the sounds together to say his own name. I asked Alex again what his name was yesterday and to my surprise he answered, (concentrating) "Ah-ul-eh" ... the "x" is still a struggle, but the other sounds blended so well together. I was so excited. What an accomplishment for my little guy! Yay! He can say his name! We will continue to work on saying his name as he also learns to say Sarah, and Daddy as well.

And The Why's Begin

From the time my Sarah turned two (now five years old) I can remember drowning in all of her "why's". Why mama? Why mama? WHY!?! Because of Alex's speech disorder, this is something that hasn't come easy for him. I'm sure he's been thinking "why" for quite some time, but just yesterday I asked Alex not to do something and he said, "WHY mama?" It came out just as clearly as that. I had to just smile and give my boy a hug. It's still amazing to me how excited I can become over such little accomplishments. I know how hard my boy has worked for the past two years in speech therapy. I'm so proud of him, and even thankful for the many "why's" to come!

The Calm After the Storm

It's been a while since my last post. Seriously, I've just been enjoying the "calm after the storm". With insurance now covering unlimited speech therapy visits at 90%, we are back to a great two day per week routine, as we work around the holidays. Alex is doing well and continues to surprise me with his many successful attempts to communicate. He lights up when I mention we will be going to see Miss Kate, our therapist. She has put together a wonderful communication folder for us that I am so pleased with. I continue to carry with me a thankful heart, knowing that God was faithful to us, and a hopeful heart for how He will continue to bless our family through Alex's journey.

We're back to THERAPY!

Insurance has approved twice a week speech therapy visits until the end of this year. At that time they will review a progress report, so to speak, and our request for more therapy and approve what is appropriate at that time. This is a HUGE HUGE deal for us. We got approval on Thursday and were back to therapy on Friday morning! I know I was smiling ear to ear as we walked through their doors. No one could have been happier than I to be there that day. Wooohoooo!

There is no such thing as being powerless and hopeless - There is always God.

Guess It Isn't Over YET

Much to my surprise and dismay, I received a phone call letting me know that insurance wanted a copy of Alex's IEP (Indivualized Education Plan) from the school system's preschool he attends. I suppose they want to review what services he's getting there and base their decision as to how much (if any) therapy they will cover aside from that.

Here is where I am coming from: Any research I have done recommends that a child with apraxia in the severe category, such as Alex, receive ongoing frequent intensive therapy from a speech language pathologist who is knowledgeable and experienced with treating apraxia. Frequent is defined as UP TO five days per week for UP TO 40 minutes. Alex is receiving 9 hours of special education services, only one hour of which is SUPPOSE to be individual speech therapy. However, I have been informed that there have often been one to two other children joining Alex for therapy in a small group setting. They simply do not have the time to work individually with the large caseload of children that they have. The speech therapist is great, don't get me wrong. However, I do not believe he is probably getting appropriate therapy in the manner in which is recommended for a child with such a disorder, in the school system.

I spoke with Alex's speech therapist and she is getting together a letter for us to send with the copy of the IEP to the insurance company to let them know WHY it is so important for Alex to be getting treatment in addition to the school system. She is awesome and has been such a big help to us. We are so ready to get started back to therapy! We miss our Kate!

Seems like I've been so swallowed up in research and paperwork and phone calls lately. I cannot wait until all of this is finally past us and we can concentrate on what's REALLY important here, and that's Alex!

INSURANCE WILL PAY!

I cried tears of joy and relief as I read these words in a letter we received this week from our insurance company... "After review of the information submitted, the original decision [denial] has been overturned. We find this service [speech therapy] to be Medically Necessary and Appropriate..." Alex will be starting private therapy again very soon with Miss Kate. We are THRILLED!

"And whatever you ask for in prayer, having faith and believing, you will receive." - Matthew 21:22

Why Worry When You Can Pray?

I lingered on this thought as I helped my mom pack up her things. As long as I can remember this little painted wooden banner saying "Why worry when you can pray?" has hung in our kitchen. I pack it away and wonder if she'll hang it in her new house. I often worry about Alex's future. Will he be able to overcome this speech disorder? How will others treat him? How will this affect his life long-term... his education, employment, relationships? I try very hard to put on a good game face and insist that things will work out and we will live happily ever after. I honestly do feel that this is all in God's hands. However, I am also human and feeling completely helpless in this whole situation. As a mother, that is a terrifying feeling. So much is still up in the air with our insurance company. My husband's employer's human resources department is telling us that coverage has been approved and yet the insurance company is telling us that no such decision has been made. I've already noticed Alex having a hard time with a word or two that he was using consistently in private therapy. I try to have him use his speech as much as often, such as the other night when he wanted me to open something for him, I had him repeat "open" a few times. Each time it came out sounding different from the last, and none of them correct. This is a word he was saying very well just weeks ago, and even since then as we've used it in causual reminders at home. I'm so frustrated and discouraged. Alex is such a sweetie pie. I just adore him. I want so much for this to be overwith. I do, however, have to remember to put things in perspective. He's alive... he's healthy... he's happy... and there is hope for his future. Why do I need to worry, when I can pray? Thank You, God, for blessing my life with my intelligent beautiful boy, Alex. Thank You for how he has touched my life and how this journey has brought me closer to You. Thank You for loving me even on days when I feel heavy laiden with worry, guilt, pitty, fear and doubt. Thank You for bringing me out of that pit and lifting me up again with your promises for his life. God, help me to trust that YOU alone are always in control, and may Your Will be done in Alex's life. Help give me strength to fight for him one more day, to teach him one more day, and to keep the faith one more day. Amen.

Choo Choo

We took a train ride this past weekend during the kids' fall break from school. They had a blast! Here's a cute picture of my littlest conductor watching the train go by. You can see that he's covering his ears as he often does to loud noises. I guess you just have to know Alex to really appreciate this picture.

If You Want Me To

I often speak about my faith through this journey. Some of you who visit our blog and are going through a similar situation may wonder how I seem to be so strong in the midst of uncertainty. Let me just be honest and say there ARE days where I question God. There are days when I feel angry, fearful, doubtful, and discouraged. I share these feelings with Him, and ask for strength and renewed faith as we continue this journey. I trust that He made my Alex and that He has a plan for his life, even if that plan is far different than MY dream for his life. The Bible assures me that Alex was "fearfully and wonderfully made" (Psalm 139:14) and that God knows the plans He has for Alex, "plans to prosper you and not
to harm you, plans to give you hope and a future" (Jeremiah 29:11). As I struggle with the right words to share my faith with you, I can think of no words better than the lyrics from the song "If You Want Me To" by Ginny Owens. May they be your words of faith and hope today as well.

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

(Chorus)
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
So if all of these trials bring me closer to You
Then I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

When I cross over Jordon,
Gonna scream, gonna shout
Gonna look into Your eyes and see
You never let me down

Sad Day

I am overcome with so many emotions today. I do not want to accept that today was Alex's last day for private therapy with our wonderful speech therapist. We received another letter of denial from our insurance company, and as the bills have piled high already, we simply cannot afford to keep going at this point. I do trust that this whole situation is within God's control and He cares about it. He cares about my little Alex. It's so hard sometimes when you don't understand why things aren't going as you would want them to. God's plan is bigger and better. I must continue to believe that. This isn't over yet. We cannot afford to give up. Alex will most likely need YEARS of therapy to overcome this disorder. I'm so proud at how much he's learned in just the last few months, but we still have so far to go. I was so confident in the therapy he was receiving from our beloved "Miss Kate" and we will miss her terribly. I am SO thankful that God put her in our lives, even for such a short time as this. At this point I simply don't know what else I can do, but I will continue to pray for strength and guidance to keep going in this journey. Thank you to those of you who have offered up your own prayers for us.

So Busy, I'm Dizzy!

Wow, I can't believe it's already half-way through September. Alex started back to developmental preschool and is going three days per week in the mornings. He's having a blast, and this school year he's riding the bus to and from school, which he loves! With one in Kindergarten this year and one in special needs preschool and speech therapy, we have been keeping pretty busy since school started. I'll have to admit that I have enjoyed every minute of it! I love packing their lunchboxes with a special napkin or note from Mom, and going through their folders each afternoon to see what all they did at school that day. We hold hands each morning and say a prayer before the kids are off for school. Alex is so sweet as he bows his head and prays. God hears his sweet voice and knows exactly what he is saying.

Alex's private speech therapy is going very well and he is making great gains in his speech production. During his evaluation in June it was noted that he could not produce the /n/ and /t/ sounds, both of which he has been using now for many weeks as a final consonant. He is using them in words such as "o-pe-n, a-ga-in" and "ge-t, ou-t", etc. He still has to be reminded quite often to use all of his sounds as he tends to drop the ending sounds altogether, but he's trying so hard and putting more and more words together. I am so thankful for the speech therapist he has been seeing. She is just awesome and I believe God hand-picked her for Alex. I have really enjoyed being able to observe his therapy sessions through a two-way mirror so not to disturb them. It has helped me to understand better how I can continue to work with him at home.

Our ultimate goal is to make such gains in his speech intelligibility that he can communicate successfully with others. Though as his mother it is such a blessing to be able to understand his speech more and more each day, even at this point where I'm still having to translate much of what he says to others. There are still many "mountains" ahead, but I'm confident that given Alex's young age and early start at therapy, his willingness to participate in therapy, and now having a proper diagnosis with an appropriate treatment plan, his prognosis for communication is looking good for his future.

As for the insurance, I have filed a grievance for the denial of the initial speech therapy evaluation. I should hear from them within 60 days of receipt. In the meantime, we have sent in our co-pay portion of 10%. We were told we would continue to receive calls, letters and bills until payment in full was received. As for the therapy that now racks up $139 per session twice a week, we have appealed the insurance company's denial for coverage of speech therapy. The speech therapist Alex is seeing wrote an incredible letter to the insurance company describing apraxia as a medical condition which requires medical treatment (a.k.a. speech therapy). The financial advisor told me the appeals process generally takes 30 days, so hopefully we will know something within a few weeks. In the meantime, we are walking by faith and continuing to take Alex to his therapy sessions. I love how excited he is about his therapy. Sometimes I wonder if he even realizes that he is a little different from other kids.

Apraxia? Huh?

Some of you may stumble across this blog and wonder "What is Apraxia, anyway?" I share a lot of great information in previous archived entries (menu on left column), but I recently found a great website that was full of useful and to-the-point information about apraxia and I wanted to share... Cincinnati Children's Hospital Medical Center: Conditions and Diagnoses of Apraxia. It has a great write up explaining apraxia, as well as causes, symptoms and treatment and provides other apraxia resources as well. I wanted to point out a few things that I thought were of great importance. Check out the link for more details.

The website states that Verbal/Speech Apraxia is an oral-motor speech disorder that will NOT resolve without intervention. It is a MEDICAL PROBLEM that inhibits tongue, lip, and/or jaw function. Early diagnosis and treatment improves prognosis. Treatment should be frequent and intensive.

The diagnosis can come as a hard reality even to those parents, like myself, who suspected apraxia for quite some time. It was encouraging to read "generally, children beginning therapy by 3 years of age can enter first grade with at least fair speaking skills."

It is my hope that Alex can overcome this disorder so much so that it will not impact his life in a negative way, but only make him stronger, yet humble in spirit.

Move Over Bob the Builder

Am I cute or WHAT?!

A Mother's Perspective

All of the expectations
Still loom in the back of my mind
Remembering the day that they told me
That he was more than a little behind
He looks at me with great beauty
And an always glistening eye
As if he knows theres a problem
And he is looking and asking "why?"
All of the answers he's wanting
Are still questions I ask inside
Trying to find the answers
The emotion, I'm trying to hide
I am realizing how strong God has made him
How he grows and learns more each day
He has strength and determination
I know silent he will not stay
There is a world out there that needs him
Needs all that he has to give
So through the years we will teach him
How to talk, how to love, how to live
This is but a fleeting moment
So I kneel at the bed and pray
For the strength that God has given my son
And the power to teach him today

by Mindy Wagner, mother of a child with apraxia
Found at Apraxia Kids Website

First Impressions are Lasting Impressions

As we were writing up Alex's IEP (Individualized Education Plan) back in the spring, I insisted he receive more individual speech therapy than what he was getting in a group setting at preschool. The speech therapist there has more kids than she has time and I felt Alex was not getting enough therapy. So, they set up speech therapy visits twice a week for 30 minutes (outside the classroom), in addition to his developmental preschool. At the time I was satisfied with that, and I knew that we could always fall back on it if our insurance didn't come through for us to get Alex private therapy. Several months and a severe apraxia diagnosis later, we're still in the midst of struggling with the insurance company who denies benefits. I wasn't sure if I wanted Alex to even go on to see the school system's therapist, but I thought it couldn't hurt him and if we couldn't afford to keep going for private therapy, he would already be in a routine with the school system's therapist.

Monday was our first day to Debbie, or "beh-bee" as Alex calls her. Let me just say that I honestly do not even want to ever take Alex back. My first impression of her just in the 30 minutes we were there was not good at all. First of all, she was totally unorganized, and she lacked control over the environment and with Alex. I was trying to discuss his diagnosis and history of therapy and she was uninterested in anything I had to say. She continued interrupting me and never made eye contact. I didn't like the tone of voice or the mannerisms she used with Alex. Even the building in which the therapy was located was in a rough part of town that made me feel very uncomfortable. Honestly, I felt I could do better therapy at home with Alex. I know him best and I'm learning what helps him in his therapies. We learned today that this so-called therapist is not really a therapist at all. She is not even a licensed speech pathologist, but simply a special education teacher. I was aware that she knew nothing about treating apraxia, but I was prepared to introduce her to my research and hope that something she had to offer Alex may help him along the way. I'm thinking going to see her would be a total waste of our time. We have enough on our plate as it is.

Alex's first day of developmental preschool is suppose to be Thursday, but we have an appointment that morning for his private therapy. He'll go to school on Friday. Each day as we drop Sarah off at Kindergarten, he cries for her and then goes on to whine about wanting to go to HIS school. He's excited about starting school again. I am too. I can't wait for his teachers to see how much progress he's made this summer. It's amazing to me just how far he's come in the short time he's been getting private therapy. I am so thankful for that, and look forward to what this next school year will do for Alex!

Insurance Struggles (Continued...)

We decided to continue taking Alex to therapy during the course of pursuing insurance coverage. We have come so far and it just doesn't feel right in my heart to pull him out NOW. In the meantime, the bills are adding up. I've talked with sooooo many people in the last week concerning our insurance challenges. Everyone seems very willing to help, but our chance for insurance coverage does not look good. We will be filing a grievance with the insurance company to cover the cost of the speech evaluation. The hospital will be appealing for insurance coverage for therapy. I was told today that our particular insurance company has been one of the hardest to work with concerning speech therapy services, so I really don't know what to expect. I have disected our benefits plan over and over and do not feel like it is clear as to whether his disorder is a covered benefit or not. I believe the key here is convincing the insurance company that his treatment is medically necessary and that he has a neurological disorder, NOT a developmental delay. We are at least going to give it a real good try, and then again if we have to. God help us, because we can do nothing without Your hand in all of this.

One thing I am very thankful for at this point in our journey is that I feel my husband and I are finally on the same page when it comes to the care Alex's needs for his disorder. He's helping me with the process and supporting my efforts. I couldn't have gotten this far without him. I'm just so emotionally exhausted right now over the whole insurance thing. It feels so good not to feel so alone anymore.

Alex is making some noticeable progress with his speech therapist I am happy to say. If nothing else, that makes this all worth it. One of his biggest challenges with apraxia has been leaving off sounds in words, particularly ending sounds. He is now able to say "pu-sh, u-p, hel-p" and he's really coming along nicely with the /t/ sound, such as in "ea-t" and "ou-t." That one, and /d/ are really a challenge for him, but he's trying so hard. I am so proud of how willingly Alex participates during his therapy sessions.

Insurance Struggles

I am heartbroken today as I opened a letter of DENIAL from our insurance company for speech therapy. Because we were misinformed about our coverage previously, we will now be stuck with footing the bill 100% for therapy services we've received so far. We'll also have to stop seeing our therapist because we cannot afford to keep going. I am so discouraged today. Where do we go from here?

Another Hurdle

According to a phone call placed from the hospital (where Alex receives his private therapy) to my insurance company, Alex's speech therapy services were to be covered 90% with unlimited visits. Somewhere along the line, someone was mistaken. I received a statement from our insurance company for services totaling $540 that was not covered, not a single cent. Just when I was so confident that everything was working out well for us, we're facing another hurdle. We will continue to go to our therapy sessions and pray that God will work things out. Right now our insurance company is reviewing our evaluation results to determine if we are eligible for coverage. I hope we get things worked out soon. School will be starting next week and I really had hoped to get Alex's plan of education in place by the first of the school year. We'll be rewriting his IEP soon. Since receiving all the detailed paperwork from his Occupational Therapy Evaluation, we'll be asking for OT therapy once a week through the school system as well. I can't wait until things are in place and we can have some sort of structure to our days again. It seems like it's been up in the air for quite some time. Each day is different for me. One day I feel strong and confident, the next tired and unsure, though I will continue to walk by faith, even when I cannot see...

Woo Woo

Alex is fascinated by trains. As we were leaving my husband's hometown today after a visit with family, we hopped out of the car to snap a few shots of Alex on the train tracks. He was so excited. Here's one of my favorites.

..Hopeful.. Excited ..Confident..

We met our new and hopefully final therapist on Monday. She is young and very sweet, but most importantly very knowledgeable about apraxia. We had a great session. Alex worked very hard. I'm excited to say that we'll be working out plans so that she can see him twice a week. Alex's IEP is set up so that he attends preschool four days per week. Since we are going to be going to Vanderbilt twice a week, we'll probably cut back on one day of preschool. I'm also considering if we should decline the additional small group therapy they offered us twice a week for 30 minutes through the school system, outside of his preschool classroom time. I'm afraid it all may be too much for Alex. Before last school year ended in the spring I was struggling with the fact he wasn't getting enough therapy. I can hardly believe that just several months later we're actually considering declining services. I'm confident that he will be getting appropriate therapy in a private setting more so than he will in the school system. He loves his preschool and it has helped him so much in other ways such as with his independent, social and motor skills, so we will definitely keep him enrolled for the Fall. Just a couple of more weeks until school starts! I'm hopeful and excited about what's going to happen for Alex in the coming year and I'm feeling more confident that we're finally on the right path.

New Therapist

Alex's therapy appointment this week consisted of more testing. This time it was for receptive language delays which he sailed right through. He stayed on task very well and went way beyong what is age appropriate. Since we know we were going to have a scheduling conflict starting in a few weeks with our current appointment time, the therapist wanted to go ahead and put us on the waiting list for a time that worked better for us. She said it would mean a possible three or more week wait period, but just as we walked in the door at home from our appointment the phone rang with great news... we start with a new therapist on Monday mornings at 10 AM. Alex will attend preschool Tuesday through Friday, so he won't have to miss school, and we'll have plenty of time to get to our appointment once we drop off big sister at Kindergarten. I truly believe God's hand is in all of this. He's answering prayers and things are finally coming together. It's amazing how much has happened in just a few short months. I can't wait to see what the next year will bring!

He is Faithful

My sweet boy laid his cheek softly against mine as I held him this morning in church. I was reminded once again of God's promises as we worshipped through song...

He who began a good work in you
He who began a good work in you
Will be faithful to complete it
He'll be faithful to complete it
He who started the work
Will be faithful to complete it in you

If the struggle you're facing
Is slowly replacing
Your hope with despair
Or the process is long
And you're losing your song
In the night you can be sure
That the Lord has His hand on you
Safe and secure
He will never abandon you
You are His treasure
And He finds His pleasure in you

Philippians 1:6
"Being confident of this very thing, that he who began a good work in you will complete it until the day of Jesus Christ.

First Day of Therapy and More Progress

Our much anticipated first day of therapy has come and gone. We look forward to going back next week. Our first day was very casual as the therapist just wanted to let Alex get comfortable with her and the therapy room, and interview mom a bit. His therapist was so nice and worked well with Alex. She was just amazed that he had mastered some very hard sounds such as /l/ and /r/, yet couldn't begin to utter some that were usually among first sounds for young children. He continued to over use the /b/ sound. She was able to continue some testing that he didn't finish during his initial evaluation. He did so well and I was so proud of him. We took the first opening for therapy that was available but in a few weeks we may actually be back on the waiting list for another specific day and time. Alex's sister, Sarah, will be starting Kindergarten in a few weeks and the current times are conflicting. Alex will also be starting preschool again four days per week. It looks like we would wind up having another therapist pretty soon anyway as the one we saw last week was due to have her first baby soon. She looked precious and it reminded me of how quickly the time passes. It seems it wasn't so long ago when I was eagerly awaiting our baby boy. I was so relieved when he appeared to be perfect at birth. I had no idea what would lie ahead for us. I will have to say that I couldn't imagine loving him any more than I do if he WAS "perfect." I am so pleased to be able to say that Alex continues to show progress. In the past few days I've actually heard a couple of full sentences. Yes, I said full sentences! As we were leaving the hospital after Alex's first therapy session we went back through the waiting room where they have a playroom for the kids. Alex said "Own go pay, kay kay, Mama?" (I want to go play, OK, Mama?) You bet I let him go play! It was just a couple of months ago we were still struggling with putting two words together! He still has so far to go and doesn't speak clearly enough that strangers would be able to understand him, but just the fact that we as his family are able to understand his wants and needs more and more everyday is such a blessing. I love this blogging thing. It really helps me to look back and see just how far we have come on this journey already!

Some Intimate Thoughts

I stumbled across a wonderful quote today I wanted to share...

Stop telling God how big the storm is,
Instead tell the storm how big Your God is!

Wow, how many times have I cried out asking God why this is happening to my baby. I know in my heart there has to be a plan... God's plan for his life. I keep reminding God how big our "storm" is asking him to heal my little boy. I will continue to be hopeful and faithful in prayer. However, my prayers are changing somewhat. I am learning to be more patient and realize that God will work things out in His timing and not necessarily the way I would have wanted. I still don't understand it all, and I can't see the "big picture", but I trust that God has given me this very special child whom I love with all my heart. Ultimately I want this journey to give Him glory. So we'll take the next step into the next day and see where God takes us and blesses us along the way.

Insurance Coverage

Disney was spectacular. No better news could have come after a magical vacation that the news I received today that our insurance will begin covering private speech therapy 90% with unlimited visits. Alex's first speech therapy session will be at 9 AM on Wednesday the 13th of July. He will start off with one hour per week of therapy until they get a grasp of his strengths and weaknesses to determine if more therapy is needed, up to twice a week. This is nothing less than a miracle. God is so good and as a friend reminded me recently... this is all in God's hands anyway. I can only continue to pray and have faith that His Will be done in Alex's life. I am feeling so blessed and encouraged today.

Diagnosis: APRAXIA

We've been waiting for this call for almost a week since Alex's evaluation, but waiting much longer for this diagnosis. I'm relieved in way to have finally received an official diagnosis for Alex of Apraxia, from a nationally known children's hospital specializing in speech and hearing. Yet my heart can't help but feel heavy at the news confirming my fears all along. I'll share more about the report when I receive the paperwork by mail. She just went over a few things with me by phone, and put Alex in the severe apraxic category. We'll begin the process of getting insurance coverage for therapy... and more importantly the RIGHT KIND of therapy for a child with apraxia. We're leaving for the sunny state of Florida tomorrow for vacation, and it couldn't come at a better time. We'll pick back up where we left off on this journey when we return...

Occupational Therapy Evaluation

We had a great day. Our appointment lasted almost four hours, but Alex was very cooperative and particpated well most of the time. Of course, he was able to do very active things that kept his interest such as draw, cut, run and jump among many other motor activities. We received a summary of results today, but we'll receive much more detailed paperwork regarding today's evaluation in the mail soon. Alex received a diagnosis of Muscle Incoordination and Sensory Processing Disorder. It is recommended that he receive occupational therapy once a week to address his areas of need, which were found to be mostly sensory related, and self-help or adaptive skills. I hope that we can coordinate having his occupational therapy within his regular preschool setting when school starts in the Fall. I should probably call for another IEP meeting to address these issues and put in a request for the school system to do their own evaluation as well. From what I understand, even with our new diagnosis', it still make take a while to get occupational therapy in place for Alex, so I better get the ball rolling soon. At least we are getting answers and we are on the way with getting appropriate therapies for him. That is encouraging. Alex had his speech evaluation last week, but we have yet to hear the results from this testing. I hope to hear something by tomorrow.

The Big Day

I prayed over Alex this morning before he woke and for everyone that would work with him today. It was the day for our much anticipated speech and language evaluation. It was a pleasant atmosphere and our therapist was great. She had a lot of tools for evaluating Alex, but wanted to know which was my priority in case we ran low on time... speech (articulation), language (cognitive), or apraxia. I chose to start with apraxia testing since this was my main concern... does he truly have apraxia, or just a severe articulation disorder? We covered the other areas as well, but not as thoroughly as she would have liked. Alex did fairly well staying on task in the beginning but soon lost interest. He was just precious, but we had to give him many short breaks. Unfortunately, the time flew by and we didn't even get close to finishing any of the testing. I felt discouraged as this day was so important to me and when Alex was done, he just shut down. The therapist tried to encourage me by saying that I had provided her with very thorough background information from his former therapists and from what she gathered upon observing him today, she should have no problem scoring him to find out if he does indeed have apraxia. She said he definitely does have apraxic characteristics, but before she told me one way or the other as far as a diagnosis, she wanted to run the results of our testing through her computer and get a more accurate reading. She said I should hear from her within the week. I would love nothing more than to know for sure he does not have apraxia, but my heart tells me this is it. Either way we are dealing with a severe articulation problem that is going to require intensive therapy. I'm hoping that through this evaluation we can get insurance coverage for private therapy. We have not been successful at all attempts with the insurance company. But, this is all in God's hands. He will take care of everything. I believe this, but it's so hard not knowing what the future holds, and what will happen next. God forgive me when I doubt and when I am impatient.

Summer School

Today was Alex's first day of the extended school year summer services. He missed school last week because we were out of town. He was so excited about going today. He took a hold of his teacher's hand the moment we arrived and walked right into his classroom with her where he joined the other children. I could barely get a kiss goodbye (sniff). There will be about ten children in his class, along with a teacher and three aides. Their classtime will include time spent with a speech therapist in a group setting, circle time, fine and gross motor skills (art, etc.), centers - cognitive, communication, etc., story time and snack time. Overall, Alex seemed happy and I was pleased. I'm very thankful to have Alex a part of this program.

Helpless

I do the best I can daily to help Alex communicate to us, and to understand what he is communicating. It's a way of life for us now. It's so automatic, I often don't have to think about it. But, sometimes it just hits me like a ton of bricks, and my heart just wells up with so many feelings. Tears come to my eyes, just as they did today as Alex spoke not one intelligible word to me as he tried to communicate his needs. I want to know what my sweet boy is saying to me. I want him to know that what he has to say is important to me, and that I'm trying my very best for him. I feel so helpless sometimes. As a mother, that is such a terrifying feeling.

Hide and Seek

We played a fun game of "hide and seek" today. I took alphabet flash cards and hid them all over the living room. I gave Alex a bucket and he began his search. He squealed as he found each card. Each time he picked up a card we would sound out the letter and/or the name of the picture on the card. If I knew he couldn't say "walrus" we would sound out the "wuh, wuh" sound for /w/. He would then place it in his bucket and go on to search for the next hidden card. He found every card and we had a blast. Just another fun therapy idea I thought I would share.

Sharing Educational Websites

I've been looking all over the net for great educational websites to help in Alex's therapy. Some have wonderful printables, some have neat craft ideas, but I'm not finding much specifically targeting speech and articulation. Alex loves the printables and some of them really help with fine motor skills. I would love it if those of you who visit here would share any sites that have been helpful to you as a teacher, therapist, or parent. You'll find many of our favorite sites listed in the left column of our blog.

Making Progress

Wednesday was Alex's last day of preschool for this school year. I'm not sure he understood when I tried to explain it to him. He will be getting ESY (extended school year) services through the summer which starts June 7th. We'll be out of town the first week though, so he'll start the following week. He'll also continue to get speech therapy once a week for 30 minutes with our former Early Intervention speech therapist who is so kindly seeing us "off the books". I don't know how long that will last (hopefully our insurance will step in soon and cover the cost of private speech therapy), but she is just an angel. She is encouraged, as am I, at the progress we can see Alex making. She says he is making better eye contact with her upon request and that he is sitting still and participating well in his therapy sessions. This is one reason why I am so glad that we went ahead and put Alex in the preschool program. I can really see how it has benefitted him to be in a classroom setting where he receives structured learning. I've been making a notebook at home to keep all of our activities in from the Easy Does It Apraxia - Preschool therapy books we're using. I took it with me to his therapy session Wednesday and offered the therapist to use any of the activities we had already prepared. She was very impressed and told me that she thinks I would be a great preschool teacher or speech therapist, as she has said before. Actually, Alex's own special education teacher and school system speech therapist commented to me the same thing at his IEP meeting last week. Wow. Maybe that is something I will consider in the future, but for now, it's all about being the best teacher I can be for Alex. Today during "homeschool" Alex wrote his name at the top of his paper. I am so proud of my boy.

Baby Babble

If your child is apraxic, or just a late talker, I HIGHLY recommend you check out a speech therapy video called "Baby Babble". I'm so grateful to a friend of mine for sharing this with us (thanks Johanna!). Alex really loved this video and interacted well. He attempted all speech and sounds that he heard. It is not only great for speech, but it teaches concepts as well, such as "in" and "out", or "on top", etc. It teaches several useful signs your child can use to communicate with you more easily, such as "more, all done, please, help", etc. It is recommended for ages to 30 months, but I think for a child with a speech delay it could be much longer. Alex has a short attention span, but this movie kept his attention the whole way through. Even my five year old loved it. You can find out more by going to their website at Baby Babble.

Shape Smart!

I am just amazed sometimes how much Alex knows when we figure out a way for him to show it other than through speech. I've really been trying hard lately to do some "homeschooling" with Alex. Today one of the things we worked on was shape recognition. I took some colored paper shapes and glued them to index cards. I laid them all out on a table and asked Alex to find the card that had the "three - red - rectangles" or the "two - yellow - triangles." There must have been fifteen or more cards, and I was amazed that he got every single one of them correct! He was using three concepts at the same time: colors, shapes, and numbers. I am so proud of my boy. I just wanted to share. I would also like to point out that I have shared some of our favorite websites in the links sections in the left column. Some are links to fun interactive learning for the kids to do and some are great sites for parents to use for homeschooling and home therapy with lots of free printables. Check them out!

Individual Education Program (IEP)

Today was Alex's IEP meeting. It went extremely well... much better than the first one. I explained that my biggest concern as a parent was that Alex receive the most appropriate, intensive therapy program that meets his individual needs as an apraxic child. A continued goal is for Alex's speech intellibiblity to improve. The IEP paperwork goes on to explain his strengths which stated that Alex is functioning above age equivalency in the general knowledge and comprehension domain. He is able to identify six colors and at least two shapes when requested. He knows quantitative concepts and can classify categories up to a five year old age level! (WOW!) He scored at an age of 2.8 (two years, eight months) in Adaptive Skills. Communication skills was a little more difficult. His overall score was at a 2.4 age level. That was a combination of the expressive and receptive skills. He is actually only at an age level of 1.10 (one year, ten months) for expressive speech. He scored a 3.4 in general knowledge and comprehension. Alex is 3.3 years old. Alex will be receiving the extended school year (ESY) summer preschool service. His special education services starting in the new school year will include the four day a week preschool. It will be the same class and same teachers as he has now. Each class is 3 hours long. He will also receive speech therapy for 30 minutes twice a week outside the classroom. I am so pleased. Everything is finally falling into place through my dedication and prayers. I am hopeful that Alex will make great gains with his speech very soon.

Happy Mother's Day

Position: Mom

JOB DESCRIPTION: Long term team players needed for challenging permanent work in an often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work various hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in faraway cities. Travel expenses not reimbursed. Extensive courier duties also required.

RESPONSIBILITIES: This is for the rest of your life. Must be willing to be hated at least temporarily, until someone needs $5 to go skating. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, and embarrassed the next. Must handle assembly and product safety testing of a half million cheap, plastic toys and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.

POSSIBILITY FOR ADVANCEMENT AND PROMOTION: Virtually none. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.

PREVIOUS EXPERIENCE: None required, unfortunately. On-the-job training offered on a continually exhausting basis.

WAGES AND COMPENSATION: You pay them, offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.

BENEFITS: While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered, job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.

Apraxia Awareness Article

I was thrilled to find copies today at the library of the local parent magazine I submitted an article to about apraxia. Right there on the cover in bold letters was APRAXIA followed by the popular quote "Not being able to speak is not the same as not having anything to say." It's funny, but as I read my own words about my personal experience as a parent of a child with apraxia, tears just welled up in my eyes, partly because I'm hopeful that knowledge of this disorder can empower other parents, and partly because in some strange way it was theraputic for me to share my feelings with others. The month of May is dedicated to Better Hearing and Speech Month, to raise awareness of the many hearing and speech disorders and conditions that affects millions. I feel I've taken the first step to share the knowledge I have about the journey we're on, and it's a great feeling to know it could benefit someone on theirs.

Mommy's Little Boy

A special mother I want to be,
for this little boy who belongs to me.
As he looks at me with loving eyes,
he trusts that I'll be strong and wise.
All too soon he'll be full-grown,
this precious boy I call my own,
But 'til then he's mine to hold,
as I watch each stage of life unfold.
I'll do my best in the years to come,
for this little boy that I call "Son."

IEP, ESY, Speech Evaluation

I got an invitation to Alex's IEP meeting today. It is scheduled for May 10th. We'll be reviewing and updating his goals and adding speech therapy services. I am so thankful that Alex will be able to attend the developmental preschool AND get individual speech therapy twice a week for 30 minutes as well from the school system. We'll also add that Alex will be able to attend the ESY (extended school year) program for the summer which is two days per week for two and a half hours, for six weeks. I really have no idea what to expect from the summer program, or what they do to continue reaching his IEP goals.

I also received a call today from the center where Alex's speech will be evaluated for further confirmation of his apraxia diagnosis so we can seek insurance coverage for any private therapies. His appointment is June 16th and the evaluation will take from two to three hours. I'm sure in the meantime I'll think of a thousand questions to ask them... never mind all the questions they'll ask ME!

I'm really hoping to have everything in place by next school year so we'll really have a good plan of education for Alex. I didn't realize that I had to get a separate referral from the pediatrician for an occupational therapy evaluation, but I'm hoping to get this done this summer at the same center as well, due to his sensory and motor issues. If they feel he needs OT, then we can integrate that into his IEP for the Fall. There are just seven more days left in this school year! In the meantime, we're using "Easy Does It for Apraxia Preschool" about three times or more per week. It really seems to keep Alex's attention, but we really have to make the activities fun and interactive and I pick and choose the ones I feel are most appropriate for him. I think having Sarah join in really encourages Alex and it's a great way to get him accustomed to turn-taking. He is very active in what we do at home. He attempts just about every sound or word. I continue to praise his efforts, no matter the outcome. His progress continues to go in spurts. I'm not hearing as many two word phrases lately, but I'm thrilled to hear my boy calling me "Mama!"

May is Better Hearing and Speech Month

Each year the American Speech Language Hearing Association (ASHA), designates the month of May as Better Hearing and Speech Month. This is a month to promote awareness of the various types of speech and/or hearing disorders. To that end, Apraxia-KIDS is participating in increasing awareness of Childhood Apraxia of Speech and resources to help children, families and professionals. Find these resources at Apraxia KIDS Awareness Resources.

http://www.starfall.com

I cannot recommend this website enough! We've been using it for months now and both of the kids LOVE it. The ABC's part is most appropriate for Alex at this point as it is helping him to sound out letters. He actually gets very involved using this website and will attempt almost every sound. There are other wonderful activities on this site as well that help with reading for older children. Check it out at http://www.starfall.com.

Apraxia Conference

Over the weekend I attended a conference on Apraxia with Penelope Hall as the keynote speaker. It was very interesting, although it appealed more to the speech language pathologists (SLP) and students in this field of study than it did to a parent of a child with apraxia. In some ways it was informative, but in some ways it was too factual and not personal enough for a parent. They were using a lot of terminology that was way over my head. They also explained very little about therapy and more about how to recognize the disorder itself, it's characteristics, and what to expect from working with a child with this disorder. They didn't offer much information about what parents can do at home to aide in therapy. I felt like the presentation was disassociated from the children and more focused on the disorder. It was good in a way that these people were here learning about this disorder, but I was sad thinking that most of them will not hear much more about apraxia once they left the conference, and more than half of them will probably never work with a child with apraxia. In a way it was sort of discouraging as they said in such a factual way that "apraxia is a lifelong disorder... do we expect these children to fully recover from this disorder? - NO... (do we expect them to make gains from therapy? - YES.)" It's hard to swallow those statements sometimes when you have such hope that your child will come through this and it will one day be a thing of the past. The truth is that at some level a child with apraxia will always be "apraxic." I also learned that it is a pretty rare disorder. Only about 1 to 2 preschool children in 1,000 have developmental verbal apraxia. That's discouraging as well to think about how few people are actually ever going to be fully qualified to treat a child with apraxia... and will we ever find one for Alex? They explained that prognosis is based on several factors... the basic severity... how early the child is diagnosed and starts appropriate therapy... the quality of services he/she receives... and how well the child receives and participates in the treatments. You simply cannot determine what a child's ultimate prognosis will be, as each child, their experiences, and their therapy is different and may change during the course of treatment. One thing to be sure of is that children with apraxia will not just outgrow it on their own. That is why I'm trying so hard NOW to get the right treatment for Alex. One thing that I wanted to be able to share here to other parents who may not be sure if their child has apraxia was something that Penelope Hall stressed during the conference. She said that in order to correctly diagnose this speech disorder, there must FIRST be SPEECH. This disorder is characterized by the specific PATTERNS of speech the child exhibits, not the fact that there is an absence of speech. It can also be difficult to diagnose apraxia because of several factors... not all symptoms of apraxia must be present to diagnose this disorder, nor is there one particular characteristic that must be present in all apraxic children. Children also change over time, so that complicates things a little more. You can find out more about Penelope Hall and her research and publications on apraxia at http://www.shc.uiowa.edu/wjshc/facultyandstaff/hall.html.

Easy Does It for Apraxia

I am very excited that I received our apraxia materials today in the mail that I ordered off eBay. They are called "Easy Does It for Apraxia" Preschool and the program is designed for children ages 2 through 6. I've heard wonderful things about this program and I hope that it is manageable for me to do at home with Alex. It comes with two workbooks... one is a Therapy Manual and one is a Materials Book. Alex got so excited when he saw the books. There is a theme througout of a turtle which symbolizes slow, easy speech and steady progress. The book stresses that DAILY practice is critical for consistent progress. Yikes, I have my work cut out for me. But, it looks like a load of fun too. Until Sarah is in Kindergarten this fall it may be a bit harder to incorporate the one-on-one time I need with Alex, although having her participate as well might encourage him to join in. She usually just winds up speaking FOR him. We're working on that. I'll update on the program as we get into it... how Alex participates, any progress he makes, and how we like the program. This program is by LinguiSystems by Robin Strode and Catherine Chamberlain, and can be found at LinguiSystems website www.linguisystems.com or more specifically Easy Does It for Apraxia - Preschool. I would love to hear from anyone who has used this program before and what their experiences were. Feel free to comment or email me.

Mama's So Proud

When I picked Alex up from preschool today, his teacher asked Alex to show "mama" this or that. I kind of got tickled because she was so excited about whatever she was going to ask him to do. She said, "Alex, how do you spell your name?" I can't imagine the look I must have given her, but then much to my surprise Alex began to say... "A - L - E - (keh) for X" I cannot express how delighted I was to hear him spell his name all on his own. I must have squealed with excitement because all of the kids looked at me. She then asked Alex to walk toward her and he did. She asked him to walk away from her, and forward and backwards, and he did it perfectly. I'm so proud of my boy! Ok, so I'm beginning to think this has got to be more than just a "spurt".

HE CALLED ME MAMA!

I feel like a mom hearing her baby's first word!

Insurance Claim for Private Therapy

I stopped by today to see Alex's former speech therapist, Ms. Jane, the one that diagnosed his verbal apraxia. She had Alex's claim ready for the insurance company and wanted me to review it. Everything looked good and I was pleased. She stated that his diagnosis was neurological in origin and not developmental and that it required intensive treatment or his prognosis for ever speaking would be poor. Her diagnosis stated Alex had verbal and oral apraxia. She is asking for three months of one-on-one therapy twice a week, and after three months we'll try submitting the claim again for three more months, and so on. It may take a while for everything to fall into place, so Ms. Jane offered to do private therapy with him once a week for 30-40 minutes "off the books" until we can get something in place for Alex. I could not be happier. I just hugged her and thanked her over and over. She will see him every Wednesday just after preschool starting next week. I know Alex will be so happy to see her! So will I. She has been the most positive helpful person we've met on this journey. I cannot express enough how thankful I am to have her in our lives. I am so encouraged today!

Getting more therapy...

Alex's speech therapist is out for the week (so no therapy, again), but I did run into her for a moment as classes were changing today. She said that we should have another IEP meeting at the end of this school year to put in place an education plan for Alex for the next school year. That plan will not only include his participation in the developmental preschool four days per week, but also one-on-one speech therapy twice a week for 30 minutes. All I can say is I'm very pleased that he will be able to receive both services through the school system. I only regret that it can't start sooner. It took some effort on my part to keep pushing and asking questions, but the services are there and so is his need for them. I have learned that as a his mother, I have to be his voice, his advocate. He's counting on me.

EFA Update - Day 14

It is two weeks into supplementing with ProEFA (essential fatty acids) from Nordic Naturals. I can defnitely say there have been no "instant" results. However, there have been times, especially in the past week where Alex has definitely shown improvement. Alex's speech ability has always come in "spurts". At this point there's not been enough improvement to tell if this is just another spurt or it is really contributed to the supplements. It would be wishful thinking at this point to say the supplements were helping. Either way, I've been so blessed to hear my little boy attempting to talk just a little bit more. Just today as he was playing with stickers, he put one on my shirt of a cat. He then pulled off another cat sticker and said "wuh cah" (one cat). As he placed it on my shirt next to the other, he struggled to hold up two fingers, and said "ewe" (two). This is really the most dramatic example, but I remember just the other day he asked my husband to "coo be" (excuse me) as he passed him in the hallway. He said "bih tuh" (big truck) as we passed a semi while driving yesterday. Just for him to be using two words together again is encouraging. I realize that we have a long way to go and that most of what he says is only intelligible to me, but I'm still hopeful that things will improve for Alex soon. We will definitely continue supplementing, and I will continue to update if and when we have any progress to share. From my research there have been many children who still do have success with the supplements even if they show little to no progress in the beginning weeks. So, we are still hopeful!

Emails and Comments

I am so thankful to each of you that have recently visited Alex's blog and have gone on to send me emails and post comments of your own struggles and accomplishments. You are such an inspiration to me. I am touched by each story, and I'm often encouraged by your strength and faith. As a parent of a child with apraxia myself, I encourage you to "Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12) through this journey. God is faithful, and He is always there. When you draw close to God, God will draw close to you. He knows what we go through every day with our children. He created them! He has a purpose for our children, and a purpose for this journey. Please feel free to share Alex's Journey with others and may I encourage you to share your own journey as well. It is amazing to me how God has worked through this blog to help lift me up, and give encouragement to others through our story.

Local Magazine Article on Apraxia

I am so excited! This past week I took Sarah to the library while Alex was in preschool and I found a free local parent magazine. It is distributed all over our city at schools, doctor's offices, some churches and business related to kids, etc. I've seen it before and read it in the pediatrician's waiting room before but not paid too much attention to it, until now. The April issue was dedicated to Autism Awareness Month and Child Abuse Prevention Month, and it got me thinking. It was full of informative articles and advertisements and listed tons of support groups and local events, etc. I contacted the publisher of the magazine that very day about doing an article on Apraxia in May, which is Better Hearing and Speech Month and he was very interested and said this is exactly what he wants for the publication, and our community. He said he'd like to do a question and answer type of article and let me answer the questions. Well, I told him that I have my own ideas about what questions and answers would be beneficial to the community, so I shared the following with him.... "What is Developmental Verbal Apraxia?" (a.k.a. Verbal Apraxia, Dyspraxia) ... Signs and Symptoms of Apraxia ... What is the Difference Between a Delay and a Disorder? ... Important Things for Parents to Know ... Recommended Resources and Services ... Things Parents Can Do at Home ... and My Personal Experience as a Parent with an Apraxic Child. He liked what I had presented to him and told me he would probably print the information I sent him basically "as is" although he may tweak it as he finishes his research on the topic from the links I sent him. He said he would send me the final draft to review before it goes to print. I am soooooo excited and encouraged. I have also created an online support group for local moms in my city through Yahoo who have children with apraxia. They will be sharing the web address to the group in the magazine as well. I really hope to connect mothers together locally who have children with apraxia for support, as this journey can often feel lonely. More than anything, I hope that this article brings awareness to parents who don't realize that their child is suffering with apraxia, and not just a "delay". I don't know why this feels so good, but it does. I feel like our journey can help others in theirs, and that gives me some peace.

School Spring Picture 2005

I am so proud of this picture. Alex looks like such a BIG boy! This is his spring class picture from his preschool.

Sign Language / SID

I've been seeing an increased attempt to communicate from Alex though signs, but I have to slow him down to get him to actually attempt them. He'll come running to me, whining, and I'll have to say something like "slow down Alex... tell Mommy what you need... use your hands if you need to." He'll sign "help" and say it simultaneously which comes out "pel". He told me today he had "big shoes" in sign language and said "bih". Woohoo! That means he put TWO WORDS together using his signs! He also used the sign for "eat" and said "eeeee" when he was hungry. I was so proud, since he's pretty much been imitating the signs I show him and not using them spontaneously! I've tried many signs with Alex that he can already say so he can get use to putting the signs and words together. We started on "thirsty" yesterday which is a word he cannot say. I put off the sign language for so long for several different reasons. His first speech therapist used a couple of signs with him when she started therapy at 18 months old. She wasn't the best at being in contact with me and informing me of the signs he was learning. It was confusing and at the time I didn't think it was of great importance so I didn't pursue it. His second speech therapist said she found Alex very uninterested in signing and felt she needed to be spending that time with him concentrating on articulation drills and oral motor therapies. At that point he was getting two one hour one-on-one speech therapy sessions with a wonderful therapist and had three more hours of classroom time with Early Intervention. I thought with all the therapy he's getting, surely he'll be talking soon and we won't need the signs anyway. I was wrong. I regret that I didn't pursue it from the beginning. Maybe by this point he would be able to communicate better through signs and it would help eliminate so much frustration on both parts. I figure that using sign language would mean I would probably be the ONLY one he would be able to communicate with using his signs and he might become more frustrated with peers, teachers, and family members if left alone with them, and they do not understand his signs. I guess I still am not convinced one way or another about the sign language, but with such little progress that Alex is making, it looks like we're going to need some type of help in communication for him. My husband has little to no interest in signing. My daughter, however, thinks it's the coolest thing and she's trying to "read" the sign language book we have asking "Mama, what does (Sarah doing the sign) mean?" It's really adorable, but after 25 or so signs, it gets quite annoying. Maybe this is a way for her to learn along with us. Someone shared a link with me that has been great for finding signs. I have an old sign language book but it hasn't had several words that I've been searching for, so this has been quite helpful. Free 3-D Sign Language Dictionary

As a side note, I noticed several times today that Alex covered his ears and literally freaked out at something he saw that he didn't like, such as the spider he saw on the computer screen (animated) while playing a game... or when he walked into the dark laundry room. He doesn't close his eyes... just covers his ears. He's done this from time to time anyway, but not with as much anxiety, and I was actually commenting the other day that I hadn't seen Alex do this in a while. I'm very interested in seeing if the doctor's will consider Sensory Integration Dysfunction (SID) during his evaluation soon. I'm not kidding when I say he must have washed his hands half a dozen times or more on his own initiative today.

Wake Up the Mouth

Alex picked out a great battery-powered spin toothbrush by Crest. Crest Spin Brush - SpinBrush Kids It's a firetruck, and when you turn it on, it lights up! He adores it. Isn't it cute? This is a great therapy tool for masaging the gums, lips, tongue, and even cheeks and chin! Alex loves doing this exercise himself. The idea is to stimulate the muscles in and around the mouth which aides in speech production. There are other great ideas similar to this such as the spin lollipop!

Just Another Day...

I got the info packet from the developmental center on Wednesday afternoon. They will give Alex an evaluation and diagnosis so we can pursue additional therapy and have it covered by insurance. I ran around yesterday getting all of the necessary materials from doctor's offices to include in the packet I will return to them, along with copies of all his previous evaluations by Early Intervention and his speech therapists. I had the packet back in the mail to them within 24 hours, sent priority mail with delivery confirmation. They should receive it today. I have no idea when to expect them to get back to us for an appointment. A referral from the pediatrician was required before they will even review the patient's paperwork, so our doctor took care of that yesterday. I got a copy of the referral for myself and one to send with the packet back to the developmental center. The pediatrician's office not only sent a copy to the developmental center through a fax, but they sent one to the insurance company as well, stating the diagnosis was "speech delay" and used one of the BAD diagnostic codes for "developmental delays" which my insurance does not cover. Ugh! I have no idea what to expect. The doctor's referral was for an evaluation and treatment. Well, the insurance won't cover treatment at this point, especially not since they used the diagnostic code for "developmental delays." With or without a referral, our insurance company should cover us visiting this specialist for an evaluation though. If the specialist can determine a better diagnosis using the best diagnostic codes for apraxia, then the insurance company will have to review it again and proceed with THAT diagnosis. Hopefully with the SLP's claim and one from a specialist, we can get coverage. They may offer us services at the center or we could try and find a local SLP that is knowledgeable about Apraxia (rare breed) around here since the center is an hour away. (sigh) Last night was suppose to be STEP training classes (Support and Training for Exceptional Parents), where a parent advocate explains the rights of parents of children with disabilities, with question/answer open discussion. When I got to the meeting, I found a note on the door that it had been cancelled and to call tomorrow to find out details. I was upset to some degree, but also a bit relieved. I'd had enough for one day. I called this morning and they said it had been rescheduled for the 21st. I had them put my name on the list of participants. Today is Friday... no school, and Alex slept in until 9:30. Shew, he's as tired as I am!

Power of a Praying Mother

From time to time I have slipped into Alex's room at night while he's sleeping to check his covers, to look upon his sweet face, or to kneel and pray for him by his bedside. I do this often for both of my children. I try to leave an open line of communication to God every day all day, but sometimes life gets so hectic and busy that I take for granted that my God is still right there and waiting for me to come to him and ask for his help in this journey. As I was covering my boy with prayer last night I decided it was time to commit to giving him to God every single day through prayer. Whatever it is that God has planned for his life, I want it to bring Him glory. So we'll walk this journey trusting that it's all in His plan. I believe in the power of a praying mother.

SLP & Insurance Matters

I called the speech therapist (SLP) today who use to work with Alex in Early Intervention. She's just the nicest person you'll ever meet and she is so willing to help in any way that she can. She is the one who diagnosed Alex with verbal apraxia. She was so sorry when I told her that Alex wasn't getting therapy in the school system like he should be. I've been told that we may not need a neurologist or developmental pediatrician to diagnose Alex to get insurance coverage. The SLP can file, and with the right terminology and codes, it might just work! So, we'll start here. She said she'd be happy to help us get everything ready to be presented to the insurance company. She's an angel. I thank God for putting her in our lives. I mentioned to her the book I've been reading, "The Late Talker" (see previous entry with same name for more information, archives March 26, 2005) and she said she had never read it but that several of her patient's moms have mentioned it to her before. She said she would consider it helpful if I would provide her with information from this book to write the insurance company. It includes the diagnostic codes needed and even a sample letter to the insurance company for coverage. So, I'm off to do my "homework". Let's pray that it works!

Developmental Evaluation Status

I got the letter from the center where Alex was referred for an evaluation, and lots of papers to fill out about his history of development. I have to send them back to be reviewed along with a referral from his pediatrician and reports of his hearing evaluations before they will even schedule him an appointment. I suppose I'll continue to pursue this avenue (even though the SLP will help me pursue insurance coverage without further diagnosis), just because I would like to know if there are any other underlying issues to Alex's disorder, that the speech therapist could be missing, such as sensory integration dysfunction or hypontonia, etc. And, if the insurance company denies the first claim from the SLP, we'll already be one step ahead of the game. There are so many steps to this process, and it looks like it may take a while for things to happen. It can get overwhelming, but we'll take a day at a time. I'll stop tomorrow at the ENT's office to sign a medical release form and then I'll have to pick up copies of Alex's records next week. I hope getting the referral from the pediatrician is as simple as having them fax it to the developmental center. I called the insurance company to confirm that the center was covered, and it is. I also had a local parent of an apraxic child to recommend a particular doctor in this practice. God is definitely opening doors...

On My Own

God gave me a scripture today, and I feel like He must have written it just for me at just this point in our journey. "Trust God from the bottom of your heart; don't try to figure out everything on your own. Listen for God's voice in everything you do, everywhere you go; He's the one who will keep you on track." - Proverbs 3:5-6 I pray that my heart will be in tune with God so that I can hear and receive his guidance. I can't make this journey alone. I'm beginning to wonder if this is Alex's journey or mine, LOL!

EFA's

I'm excited we got our "stinky fish oils" from FedEx today. We purchased our ProEFA, an Essential Fatty Acid supplement, at NordicNaturals.com. It has documented successes with many apraxic children. We're going to give it a try. Today Alex had his first supplement straight from the spoon. He didn't even make a "face". It had a nice lemon fragrance, much to my surprise. I was expecting it to be fishy. I don't know what to expect or when, but I'm hoping like many other families, we see progress soon.

Nordic Naturals' ProEFA is an Omega-3 (from fish oil) and Omega-6 (from organic Borage oil) combination. Each 1000 mg soft gel capsule provides EPA, DHA, and GLA, which are important for proper cell signaling and membrane flexibility.
"Anectodal reports have been dramatic and strongly suggest that LCP [long-chain polyunsaturated fatty acid] supplementation - combined with speech therapy - could become the treatment of choice in disorders such as apraxia." - Marilyn C. Agin, M.D., Lisa F. Geng, and Malcolm J Nicoll, “The Late Talker: What to Do If Your Child Isn't Talking Yet”, pages 118-119, Chapter 8: Alternative Strategies: Nutritional Intervention.

Here is a picture of the bottle and capsule. We just snip the end and squeeze the liquid out. Alex will take one a day and I ordered a 3-months supply to get us started.



Order at NordicNaturals.

On The Road Again

Evidentally I've gotten across to the preschool speech therapist that I'm serious about Alex's therapies. She wrote me a note today and put it in Alex's backpack to take home. You have to understand that for six weeks into this program, he's not had any one-on-one therapy and no progress reports of any kind. She said she worked with him today on his oral motor skills one-on-one and also in a group setting. She described everything she did with him so that I could continue with him at home. Who knew a lollipop was such a wonderful tool for oral motor therapy!? She is trying to get him to have more of an awareness of his oral structures. This will aid in his speech and language development. I'm glad that's he's finally getting this type of therapy, but he's suppose to be getting SPEECH (articulation) therapy as well, which he is not getting. So, at this point it looks like we need to continue pursuing private therapy. I would love for Alex to continue going to the developmental preschool and have one-on-one private speech therapy a couple of times a week as well. The developmental behavorial pediatric's office that I visited the other day (the one that's closing) called me and recommended a developmental clinic for us to go for Alex's diagnosis and treatment. They actually do therapies there at the center. If they could get us insurance coverage with a diagnosis, we could get private therapies there and Alex could stay in his preschool as well. Only thing is it's almost an hour away, but we'll do what we have to do. I called to schedule an appointment and had to leave my personal information about Alex so they could mail us an information packet to fill out that we bring with us to our first appointment. I feel like we're back "on the road again" in the right direction! Beware brick walls! I'm encouraged today, and I'm feeling a little more confident about what I'm already doing at home with Alex. We'll get there...

Mama's Boy

I love this picture!

ESY for Summer

I cannot believe it was as easy as talking to the right person. I shared my concerns with Alex's new speech therapist about the extended school year (ESY) during the summer yesterday as we talked on the phone. As I have mentioned before, I have gotten a "no way" all the way about getting Alex ESY services this summer, but I hadn't talked to the speech therapist about it until yesterday. When I picked Alex up from school just now his speech therapist was there and she said she checked on ESY for Alex and there should be no problem with him getting therapy during the summer since she now gave him a referral. She said he may even be able to go to their preschool program in addition to getting therapy. WOW! I asked her what I needed to do at this point, and she said she would take care of everything. I was so exhausted over this whole thing, but I'm so glad I kept pursuing it. I mean, if I don't fight for Alex, who will? Maybe we've just gotten off to a rough start. Hopefully this will be a turning point for us to get going in the right direction for Alex's therapies. There's still so many decisions to make and this journey isn't easy. I wasn't prepared for this as a parent. Nonetheless, I feel so blessed to be mom to such a precious child as Alex.

Those Darned Brick Walls

I seem to keep running into them. I continue to ride this roller coaster of emotions as apraxia becomes a part of every day life for us. I was encouraged to be on my way today to the Developmental and Behavioral Pediatrics office to set up our first appointment and get the paperwork going for Alex. I am convinced if we can get an "official" diagnosis from a specialist then we can pursue getting insurance coverage and summer therapy. I hit today's brick wall when I got there an asked to set up an appointment and I was told that the doctor was not only closing his practice but he was moving to a full-time office on the military base and wasn't taking any new patients. We are not military. This doctor is the ONLY doctor of his kind in our whole city, the fifth largest city in our state I might add. What's wrong with this picture? The girl at the front desk didn't have any idea what apraxia was, much less knew of any other doctors of this kind to recommend to us. I asked where he was sending all of his patients and she said that most of them were just going to be cared for under their regular pediatrician. Well, lucky us... this doctor IS our regular pediatrician. So, we're going to lose him as a primary care physician too. I felt like I was at another dead end. Ok, God, so this is not the doctor you want us to see. So, where do we go from here? I left our phone number with the receptionist in hopes that the doctor might call us with a referral. We shall see.

The Not-So-Speech Therapist

In Alex's Daily Communication Log for today, I asked if it would be possible for them to let me know when Alex had his one-on-one speech therapy sessions and for how long, as I was under the impression that he would be getting therapy twice a week. Remember, it's now been six + weeks since he has had any one-on-one therapy. The speech therapist (ST) was not in today, but the special education teacher talked with her on the phone and mentioned my note to her. I appreciated that the ST called me this evening. This was the first time I had actually gotten to talk a bit one-on-one with Alex's new ST about his disorder and my concerns for him, since he started the developmental preschool. I was relieved to know that she was familiar with apraxia and had worked with other apraxic children. She said that at this point she's working at two schools and has too many students to handle to give Alex the true appropriate articulation drills he needs, but she plans to work on oral/motor skills with him as she can and some signs. He's only been getting group therapy at this point. She told me that she felt he shouldn't have been in the preschool program in the first place, but only getting one-on-one speech therapy for articulation, since that's really his only significant "disability". During an initial meeting with the school psychologist, I was told Alex would only be offered 15 minutes of speech therapy twice a week, OR we could look into the preschool program where he would receive therapy in the classroom and he could go up to four days per week. He was receiving two hours of therapy a WEEK at that point through Early Intervention. I didn't want to go backward. It seemed to me that he would benefit from a variety of group therapy, one-on-one therapy, and oral/motor exercises in the classroom setting, more so than the two hours of therapy he would get in a whole MONTH in the other situation. When I told the ST about this on the phone, she said it was not the school psychologist's place to tell me how much therapy he would receive. She said that the speech therapist would be determined herself and that it would be based on his individual needs, but more than likely it would be the standard 30 minutes twice a week. She told me that she would really like to see Alex involved in BOTH programs, and she would check to see if this was possible. That sounds ideal. But, it may come down to me having to choose between the two programs. I don't know which one would be better. I think one major thing that will help me make my decision is if this speech therapist is familiar with how to treat apraxia appropriately. I will definitely want to interview her before making my decision. She told me she would get back to me about the ESY (extended school year - summer) and whether he can participate in both programs during the regular school year. She said she has no problem with Alex having therapy during the summer. This just HAS to happen, even though the school psychologist says "NO WAY". I'm doing everything I know to do at this point at home with his therapies, but I'm not a speech therapist and I can't give Alex the appropriate therapy he needs. I have to be the best MOTHER I can be right now, and I have another child to think about too.

Bubblin' Glitter Bug

I just got home with a bag full of goodies to help with Alex's therapies at home. I got things to help stimulate the muscles in his face/lips/jaw... bubbles, party blowers, "trick" candles, whistles, and pinwheels. I have to share about the cutest little bubble blower I found at Wal-Mart called the "bubblin' glitter bug". Check it out at Bubblin' Glitter Bugs by Little Kids, Inc. Bubbles come out when you blow into it, and the wings spin around and around. I thought this one was an especially neat little toy for therapies, and so much fun! I just had to share. The kids are having a blast... who knew this was therapy!? Here's a pic of it from the webpage.

The Boy Who Ate Words

There's actually a book out there with this title. I'll have to get my hands on it since it sounds so much like Alex. He's always struggled with "losing" his words. It's hard to tell what words Alex can say since it could change daily. A word he could say today, might be a struggle for him tomorrow. If someone asked me how many words he had in his vocabulary, I wouldn't even know what to tell them! But, writing some of them down from time to time is encouraging to me that he is "talking". I've been trying to make a list in the last day or so of the things that Alex has been saying, either repeated or spontaneous. I'm noticing more spontaneous speech, and some two-word phrases. I'm very pleased with what I'm hearing. He still has a very "apraxic" approach to his words, such as saying the first consonant and vowel and leaving off the ending sounds, or starting with the last consonant and going backwards, but he's trying so hard to communicate. Take a look at this list from just over a day...

"go" -- "bee" -- "cah" (cat) -- "goh" (dog) -- "eeee" (eat) -- "peas" (please)
"ank ewe" (thank you) -- "yay" -- "uh oh" -- "baby" -- "pee-pee" (potty)
"tickey" (sticky) -- "baba" (mama) -- "bow-bow" (rainbow)
"eye woo-woo" (hi train) -- "uh-huh" and "yeah" (yes) --
"uh-uh" and "wo" (no) -- "bow bidge" (broke bridge)
"bye bubb" (bye bubbles) -- "bye wa-wa" (bye water)
"boo eeh" (blue egg) -- "reh" (red) "boo" (blue) "gee" (green)

The Late Talker

I picked up a book at the library last week called "The Late Talker - What to Do If Your Child Isn't Talking Yet" (by Marilyn C. Agin, M.D., Lisa F. Geng, and Malcolm J. Nicholl).


I cannot express in words how wonderful this book is. You can read more about it at The Late Talker. I highly recommend it to any parent with MORE THAN just a "late talker". I also recommend that you purchase this book as it should be a part of your resources through your entire journey with apraxia. This book has a wealth of information that you will want to reference through each step of the way, from getting a diagnosis, early intervention services, setting up an IFSP (Individualized Family Service Plan) or IEP (Individualized Education Plan), starting developmental preschool, and getting appropriate therapy and insurance coverage. I will be returning this book to the library and purchasing a copy for myself. I think the title grabs the attention of a larger audience of parents seeking help for their late-talking child, but this book helps to determine whether or not your child has a real DELAY or a DISORDER. This book focuses on children with speech disorders, particularly APRAXIA. It provides a list of speech signs that will help you identify if your child may have apraxia.

Some of the things discussed in this book will include 1) ways to identify the warning signs of a speech disorder 2) information on how to get the right kind of evaluations and therapy 3) ways to obtain appropriate services through the school system and health insurance 4) fun at-home activities that parents can do with their children to stimulate speech 5) groundbreaking evidence of the promising and dramatic benefits of nutritional supplement 6) advice from experienced parents who've been there on what to expect and what you can do to be your child's best advocate.

I will begin to share some things that if I had owned this book I would have highlighted because of their importance to me.

DELAY OR DISORDER?

From the book:
A delay is a maturational lag in development, for example, a 4 year old who exhibits the language capabilities of an average 3 year old. Often, with time, the child "catches up" to his or her peers without specific interventions. Unfortunately, it's not always evident at an early age if your child has a delay or disorder."

A disorder is a significant (severe) delay with a disruption in the normal sequence of development that's in stark contrast to his or her typically developing peers. The child does not "catch up" if you adopt a "wait and see" attitude. Neurologic "soft signs" like coordination difficulties, low muscle tone, a history of seizures, or the physical signs of a syndrome may be present.

For so long I have "blamed" Alex's early childhood ear infections for his "delay of speech" and it may or may not have some correlation, but I'm not certain it caused his speech problems. As time went on with little progress through therapy and as I learned more about speech delays and disorders, I found that Alex was exhibiting patterns of apraxia. I was surprised that this wasn't discovered sooner and that no one approached me about this disorder until I went looking for answers. I'm so thankful that I've done my research, and that we have started getting services as early as we have. Now my main focus is getting him the APPROPRIATE intensive therapy he needs to overcome this disorder, or at least learn to live with it reaching his full potential, since we have identified this disorder. Several statements from mothers of apraxic children in this book stand out to me. One states, "as a parent of a non-speaking child, it is up to you to be his advocate." This book is a great tool to equip you to be knowledgable about how to do just that. I know I will be referencing information from this book for months and months, possibly years to come.

GETTING THE RIGHT THERAPY

From the book:
Getting the right kind of early therapy is of paramount importance, especially for children who are diagnosed with apraxia, because they do not respond to the traditional speech therapy methods. They do not benefit from group therapy. They need more intensive and more frequent therapy than children with other speech problems. They need intensive one-on-one sessions at least three times a week. If they take a break, they are likely to regress. Children with apraxia do not "grow out of it."

My husband and I have decided that in order to get Alex the appropriate intensive therapy he needs, we must have him officially diagnosed through a developmental specialist. So far we only have an unofficial diagnosis from his last speech therapist, and from mom too, of course. We are fortunate that the specialist he will see also happens to be his primary care physician in pediatrics. I will go this week and schedule Alex's first appointment and start the paperwork. I have no idea how long the process will take to get a diagnosis, but I plan to use it to get services through the school system (ESY - extended school year) through the summer, and have our insurance company cover private one-on-one therapy sessions with a speech language pathologist in addition to school system services. Alex has only received group therapy so far through the school system and as I've read repeatedly in my research, children with apraxia do not benefit from group therapy. I think the program is good for him that he's around other children and in a structured educational setting, but he needs additional more appropriate one-on-one speech therapy as well. I will post about our experiences as we go.

ESSENTIAL FATTY ACIDS

Through my research and information found in this book, I have found that there has been a great report of progress from apraxic children who have had essential fatty acid supplements on a daily basis. Apraxic children have primarily shown most improvement through the supplementation of ProEFA, found at Nordic Naturals. I ordered a three month's supply from their site last night and we will give supplementation a try. Do your research, ask your child's pediatrician, and see if this is something you would like to try with your apraxic child.

COPING WITH FEAR AND FRUSTRATION

This book explains how to cope with your own fears and frustrations as a parent of an apraxic child. It goes on to list the stages that parents typically go through, and in order... Denial, Anger, Fear, Guilt, Depression, Acceptance. Personally, I identified with all of these and I think I experience all of them simultaneously to some degree or another. I think I'm largely in the "Fear" stage. I am intimidated by the people I'm fighting to get Alex the services he needs. I fear the unknown about Alex's future and how this disorder will affect him long-term. I fear that I am uncapable of being the mother I need to be for him. I fear uncertainty, confusion, helplessness, coping. I know these things are natural feelings of the flesh. I also know I need to turn over these feelings of fear to the Lord and ask for His strength and guidance, and overall that His Will be done in Alex's life.

Forgive Me

I've found some comfort from the other moms of speech delayed children I've met on internet message boards. I've found a wealth of information and advice, and I'm truly grateful for these women and their knowledge and experience. It's always a wonderful thing to hear a success story about these little ones who have struggled so much with their speech. Even just the little things, you want to share in the joy with these women. These type of posts use to give me hope, but lately, I've been feeling differently about them... a little overwhelmed with the many success stories from everyone else, and too little of my own. It reminds me, again, of how slow Alex is progressing and I feel jealousy like I've never felt it before. God forgive me. I am so proud for them, but my heart aches to see my baby making noticeable progress too.