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.