A year ago after two speech evaluations, Liam's speech was estimated to be delayed somewhere between 8 and 12 months. He was counting to 20, pointing out letters, and singing songs, but couldn't communicate. Occasionally, he might string 2 or 3 words together but they were always delayed echolalia from books or The Wonder Pets. I was in the depths of researching autism spectrum disorder and knew perfectly well that it was in the realm of possibility that he'd never talk. I worked with profoundly autistic individuals in several setting in college and graduate school. I worked with men who had no ability to communicate, those that knew a few signs, one who used picture, one who only echoed a handful of phrases, and another who barely spoke, but wrote ina notebook for his parents what he did at camp each day. I knew not talking was in the realm of possibility. Liam babbled and jargoned an awful lot and never seemed to care whether I understoof him.
I had faith he would talk and every hope that it would be soon. I was a bulldog in fighting for more speech therapy and getting him more help consumed my thoughts and energy. Somewhere in the spring, his few scripted phrases started branching out; he was still echoing, but he was doing more phrases and some full sentences. Then he started twice a week speech therapy, and suddenly, there were new words and he was trying harder to use words and jargoning less. In June, just in time for Dave's return home, he started using full sentences almost all the time. When we moved in August, Easter Seals did a discharge report that said he was speaking at age level.
Liam had a break in therapy with the move and immediately regressed. His special education program pulled me in and said he needed speech therapy as it wasn't in his IEP from Alabama. They added speech therapy, but in less than 6 weeks, he had achieved the speech goals they'd written for him that they thought would take a year to meet. He had a private speech evaluation last week and they determined he is speaking at age level and even above age level. He will be doing speech therapy as I have two concerns that didn't come out in the testing: he still confuses pronouns and he has poor processing and cannot answer questions (he simply echos them back).
I don't know how to tie together my feelings and thoughts on all this. I really understand that while the progress proves that early intervention works, the progress is miraculous. In 1 year time, Liam progressed 2 years in speech. This amazing progress brings a healthy dose of fear because I don't know what Liam's future is. I had finally started to look at his future as a kid with PDD-NOS with hope, but day by day, he fits that diagnosis less. The likely outcome is that Liam will be re-diagnosed. He might be re-diagnosed as having Asperger's Syndrome, which means social impairment but no language delay. Aspie kids tend to seek out social contact (as does Liam) but have quirks that make socialization difficult. He might lose his autism spectrum diagnosis entirely, which was my desire from the start. But if he does, he'll likely get re-diagnosed with a language processing disorder, such as Central Auditory Processing Disorder, which would explain his initial difficulty with language and his continued struggle with understanding questions. His future holds some uncertainty now, but I have faith it will be alright no matter the change. The last year has taught me that Liam is my special boy no matter what label he is given.
My only real fear is lack of services as Liam shows such progress. Liam has made such great strides because of the support he has been given and without it, he'll go back to floundering to keep up developmentally. But from a therapy perspective, once he is at age level, they consider him to not need the help anymore. This leaves some kids in a cycle of falling behind, getting special education to catch up, then having the help taken away and falling behind again. I don't want Liam entering that cycle.
For tonight, I think I will just focus on the miracle of the strides he has made. I will worry about getting him the help he needs as I prepare for next month's IEP.
3 comments:
Hi Michelle,
I have a couple of thoughts as your post really struck a chord with me.
First, Kate just got the pronouns down within the last few months and only after INTENSELY working on it. In August when she started with her private therapist (at 4 yr, 2 months) she couldn't distinguish, but now she does. She even will check dogs to see if they are a HE or a SHE. LOL.
Second, and I don't know if this is state specific, but they can't declassify Liam without your written consent. For instance, in our state, once a child is classified as needing special services, as Kate now is, they often try to de-classify them as they enter kindergarten..which means they get no help, have to re-qualify, and apparently there is a huge delay in getting them classified again. A good friend is a kindergarten teacher here and has told me not to let them de-classify Kate as she moves out of preschool into kindergarten. But again, I'm not sure if every state works like that. Lastly, I, too, am worried what is going to happen this summer if Kate doesn't qualify for the year round program (she won't be assessed until June for this). I, too, feel she regresses over the summer without the contact with the other children and help and have no idea how to find a program that would be good for her.
Kelly, I was thinking of you and Courtney as I wrote this post. It is so hard for those kids who need just a little bit of help, and it worries me quite a bit. I want to celebrate Liam's progress and I have, but it just makes me a bit nervous....it is just the fear of the unknown I guess.
He/she and him/her and pretty much reversed almost 100% of the time. Poor Ben is always called she. (giggle)
I know it Michelle. In this area, we have a bunch of programs for the kids who need some help in 1 area or another. But it is insanely expensive, there is no certification, and I'm just not likely to leave my 4 year old who can't communicate that well with a bunch of strangers for blocks of time. I am just praying she'll qualify for the 12 month program and she can continue through August and then start kindy in September.
We worked at home alot on the pronouns. Anytime we saw a person- in real life, in a book, on TV, I'd ask, what is he/she doing? with major emphasis on the He or she. and she'd have to answer appropriately.. "She is walking." Initially she would put emphasis on the pronoun too but it eventually just clicked for her. Liam was 3 in August right? I keep thinking he was 4 in August but I know he's younger.
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