Happy New Year

I can't believe how much time has passed since my last entry. Thank you all who continue to check on us and send encouraging words and prayers to us through email from time to time. Alex took quite a bit of a break from therapy during Christmas. It turned out that it took him about the whole Christmas break to get sick and then well enough to return to school come January. He had some sort of viral infection which led us to the emergency room one early morning after Christmas. We also happened to be out of town, which made things interesting. Alex's fever was spiking and holding at about 104, and when he began hallucinating, we decided we would take him in to be checked out. Now, THAT was scary! I had given him Motrin for the fever, and was told that we were just to push liquids (he wasn't eating at all, and barely drinking, so there was a concern for dehydration as well), keep up the Motrin and do the best we could do to make him comfortable until the virus had run it's course. Fortunately, the next day we did see some significant improvement. He's been happily back to preschool and back into our therapy routine since the beginning of the year. Of course, now he has caught a cold and has a congested cough and runny nose. My poor baby. If it's out there, he's going to catch it! Anyway, he continues to show steady progress with his speech and delights us almost every day with the new things he can say. A few examples are "I got coal in my train car!, I smell it (skunk) too!, and I go tell my mom!" LOL Of course, there are still many articulation errors, but we are talking about a child who was unable to say "mama" and was struggling to put two words together just this time last year. I am so excited to think about how he is going to mature and make progress this coming year! So, stay tuned! :o)

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...