Chaos

This is the word that is summing up my life right now.  At least in regards to getting Gabe the speech therapy he needs.

Most of the people who read this are already aware of Gabe's speech history, but for those who aren't, I'll recap.

When Gabe was a toddler, he didn't say any words.  He made noises, but no words.  He would point to things, drag you to things, or make motions so you would understand.  At 18 months, no words.  Everyone said, "Don't worry, he's a boy.  It will come.  He'll talk when he's ready.  He's just a late talker." And so on.  At 20 months, nothing.  At 23 months, there was "Mama"  but not consistently and not necessarily at me.  I was worried, not excessively so, but when other two year olds are running around talking up a storm, and mine just makes noises, it is hard not to.

It was at this time that I had a student that I was fairly certain was on the autism spectrum, although the parents had never had this student tested.  This student had been home schooled before high school, and while the parents did an excellent job academically preparing them, the social skills were lacking.   This student had siblings that were also socially inept, but were able to get around and adapt.  Not this particular student.  And when school officials brought it up to them, they were adamant that testing was not to be done.  I felt sorry for this student.  If there is something that can be done to help someone who has certain needs, it should be.  But I digress....the point is, I was terrified of being that parent.  The parent that ignores that there is something wrong and does nothing about it.  And to tell the truth, I was scared that Gabe was autistic.

I know there are many wonderful people who have autistic children and siblings and so on, but I was really scared that if that was the case, I wouldn't be able to handle it.  I talked to the teacher of autistic students at school and she told me to check with the local intermediate school district.  After leaving a message on Thursday morning, the most amazing person came into our lives on Friday.

Friday was Calah's field day for preschool.  While I was there, I was talking to an acquaintance,  a parent of Calah's classmate who worked at the ISD and was a speech pathologist.  I described Gabe's predicament and told her my fears.  She said she would grab his file and give me a call to set up an evaluation with a developmental specialist and herself.  Less that two weeks later, Gabe was evaluated.  He is not autistic, but he does have childhood apraxia of speech.  This means that the motor nerves between his brain and mouth were not fully formed and although he could understand what you were saying and what he wanted to say, he couldn't get it out.  His initial testing at exactly two years old was: receptive language (what he understood) 2.6 years, his communicative language (what he could communicate) 0.9 years.

This began our journey into speech therapy.  We are blessed to have a great Early On program in our county and we had a wonderful speech and language pathologist (SLP), Dana.  She was with us for a year, until Gabe transitioned out of Early On.  The progress he made in one year was unbelievable.  But we were sad that we had to leave Dana.

Next it was adventures in public school special education.  I spend a fair amount of time reading and attending IEPs so I was figuring that this IEP thing wouldn't be such a big deal.  Instead, I have spent the last two years advocating relatively fiercely for my child.  I have decided that I do not really care who is inconvenienced, as long as I get what is best for my little boy, I am going to do it.  What that means for me is a lot of phone calls, asking a lot of favors, and begging for people to work with us.

My insistence is well intentioned.  Gabe is in preschool for only three hours at his primary school where he gets speech services.  I do not think it is unreasonable to expect that his services will take place outside of his school day.  I understand that as he moves into kindergarten next year, he will have to have services during school and will be missing class.  But for now, I don't think that it fair for him to always miss circle time, or always miss centers, or anything else for that matter.  I realize that it probably means that the people I deal with dread my phone calls, but I just want what is best for my son.  He deserves to have every preschool experience and I don't want him to miss out on anything.

He also attends a developmental preschool two days a week where he receives group language therapy.  I think this has helped tremendously as well.  He is more confident and at this point he is probably 60-70% intelligible.  He has improved so steadily, my fear is that he will plateau and we won't see progress for months.  So far, we've only been blessed with improvement.  We work with him all the time and make sure that he gets therapy in summer.

Also, I have done a fair amount of research and read a lot of message boards.  I have discovered that we are very blessed.  Gabe is only mildly apraxic.  He shouldn't have many lasting affects.  We will have to be vigilant about dyslexia and some words may always pose challenges to him, but compared to other families' struggles, ours are minor.  That being said, I'm not going to lie.  When we first realized what we were up against, I was scared and sad.  It is really hard to watch your little guy struggle with anything.  And the truth is, he is the one that has to do the work.  I can remove barriers and make it easier for him, but he is the one who has to do the work.  He is so good-natured about it.  He never complains and really enjoys going to speech.  He is so patient when he is telling you things and will repeat them to you until you get it. 

Ironically, words cannot express how proud I am of him.

So, the "chaos" part of this is that I am finally putting the last pieces in place so we can start therapy next week and get going.  It's been a long two weeks, but if he is successful, it will have all been worth it.