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.