this morning i’ve been remembering how different things were for our family 2 years ago at this time. Josh was about a month away from turning 3, and could only say one word. “Daddy” entered his vocabulary at Christmas 2006. I was “Babbie”, Grammy was “Eeya”, Grandma was “Duy” and Grandpa was “Baow”. His speech consisted mostly of sounds that were only meaningful to him, and we had managed to decode very few of them.
when Josh was 2 1/2, i initiated the process of having him evaluated with regards to his speech. we were becoming concerned because his speech was definitely nowhere near close to other kids his age, and we were getting odd looks from people when he opened his mouth to say something. no one seemed to understand my concerns, and i was really thankful when a couple came into our lives who had a child that was also undergoing assessment. i called the New York State people who handle early intervention programs, and they referred me to our local school district because Josh was approaching preschool age quickly, and would no longer be eligible for their program.
Josh was evaluated by a psychologist and a speech therapist from ECEC, a local agency that runs a wonderful preschool program for kids with varying needs. (in fact, one of their classroom locations is at our church, they lease the entire lower floor of our education wing) By the end of their evaluation, they were really concerned because his speech was at the level of an 18 month old child, and here he was 3 months from turning 3. They made a recommendation that he be put in a “full day” program (full day at this age means usually anywhere up to 4 or 5 hours a day) where he would receive speech therapy and special ed services.
as you can imagine, Brian and I were really knocked for a loop by all of this. we were concerned about Josh, but after this evaluation we were upset, sad, wondering if we were at fault, and wondering what was really wrong with him. at that age, it is very difficult to put a name to a diagnosis because children are still developing…. so we’d been told that things weren’t right, but we had no name to put to the issue other than developmental delays. we prayed and prayed, and ultimately had to leave this all in the hands of our loving God who alone knew the outcome.
after a meeting with the Albany City School District’s Committee for Preschool Special Education, it was decided that Josh would not attend ECEC (which was disappointing) but would be enrolled in a brand new program at a place called Advanced Therapy. Looking back, i’m thankful he ended up there… but at the time i could have gladly smacked the head of the CPSE – and my future meetings involving her left me feeling pretty much the same every time. let me say this – if you are a parent involved in the process of setting an IEP for your child, your mama/papa bear claws WILL come out, and it’s important that you be the number one advocate for your child. in a gracious way, of course 😀
so the first day of school came, and we dropped Josh off at AT. we had visited there once briefly and to be honest i was not impressed at the time of our visit. initially i hadn’t been told that AT’s program was new, and that would have explained a lot of how things went on the day of our first visit. the first day of school was much better. Josh went off with his new friends with a sad look at us, but he didn’t cry. by the second day, he marched in there and didn’t even give us a kiss goodbye! Over the course of the school year we gained immense respect and love for the people on staff there, and their mission to provide services to kids in need of help.
Josh was assigned a SEIT (special ed itinerant teacher) named Terry, whom we really came to love. Her gentle-but-firm ways of dealing with the kids she helped made me so thankful that Josh had her for a teacher. He was also given two wonderful speech therapists, Sharon and Courtney, whom we also grew to love. There was also a classroom teacher named Kelly, who was let go just prior to the end of the school year. Josh had a hard time with that and needed a lot of reassurances. The new teacher that came was great too, but i wish that the powers that be at AT had handled Kelly’s departure better. Josh was in a class that usually was about 10 kids, almost all of whom were boys. I think there was one girl who was there once a week.
Within weeks of starting ST (speech therapy), Josh was speaking words that we understood and forming 3 word sentences. By the time he turned 3 in October, not only could we hold meaningful conversations with him, but he was also daytime potty trained. I honestly think that if we have another child one day, i won’t know what to do about potty training, because he really did it himself thanks to everybody lining up twice a morning at preschool, whether they were potty trained or not.
along the way some interesting things happened. one person asked me if Josh was mentally retarded when they heard he was in a special preschool program. they said “oh, i didn’t know he was like THAT”, and couldn’t seem to grasp my explanation. let me tell you, that stung. some members of our family were a bit in denial that there could be anything wrong with Josh and told me he’d just grow out of it since both Brian and I were late talkers. i absolutely don’t believe that would have happened. i also got to know a few parents in Josh’s class, and gained a whole new insight into the world of special needs kids, and an appreciation for the struggles that parents go through getting services for their child.
Josh’s hearing was evaluated twice, and each time we determined that his hearing was not part of the equation. Finally his speech pathologist was able to arrive at the diagnosis of Childhood Apraxia of Speech, which, in simple terms, is a difficulty planning the motor movements involved in speech. He surprised us all with his success with speech therapy, and amazed even his speech pathologist in terms of the speed with which he gained an understanding of how to form words. By the end of the school year, he had improved to the point where although he probably could have benefitted from further services, he was not deemed to be in need of having further speech therapy, or any other kind of therapy.
Along with the speech apraxia, he also had some delays in terms of large motor and small motor activities – thing like kicking a ball, holding a crayon properly or eating with a fork did not come easily to him. he still struggles with holding a crayon or pencil (although he can write his name very well) and much prefers foods that he can eat with his fingers. his progress in those areas is steady and i’m not worried about him too much.
i hope that if you are reading this and wondering about your own child’s development in some way that you will decide to at least make a phone call and inquire about assessment. in New York State, it’s free and there is no obligation to proceed with whatever is recommended if you’re uncomfortable with it.
if you’re reading this and your children have never required any special services, i hope that your heart will be softened towards those of us who have had to seek help. i feel blessed to have moved to NY when Josh was a baby because in Ontario, these services would have been hard to get, and it’s unlikely that his speech therapy would have taken place in a preschool setting. (which makes a big difference) In some states in the U.S., none of this is free and parents need to find funding, see what their insurance will cover, and spend alot out of pocket to get help for their child. so, when your friend confides in you that they are struggling, be a listening ear and know that in many cases they are fighting an uphill battle all the way. Josh is probably done with all of this, but many many parents out there are engaged in a struggle that will last for their child’s entire lifetime, and they need all the encouragement they can get.
as i write this, Josh is about to turn 5 and start Kindergarten. if i tell someone that he once required speech therapy, they are shocked. He does struggle a bit with grammar, but his vocabulary is probably a bit beyond average for his age, and it’s clear that he’s ready to start reading. I’m so proud of him, and thankful to God for the progress that he has made. (oh, and i’m no longer Babbie – i became Mommy in September ’06!)
Kate
:))
Sue
Thank you for sharing your story. Praise God that your son is doing so well! God is good all the time. 🙂
Gail Jones
I know exactly where you are!! Oh how I identify with the way Chris was at that time! God is greater than anything a doctor says. They said Chris would never complete regular elementary school let alone high school. Now, those experiences, hurtful ones for us too,are behind us and God has used it all for good. Chris now works with high school age kids who ‘don’t fit in’ and they KNOW he understands. This draws so many out of drugs etc and to his side. Only now, can I see that God’s hand was on us all the time. I hope this encourages you to keep on keeping on! Absolutely continue to be his best advocate in the educational system because no matter what they say…very few places are really helping students to succeed. I see it now in my high school tutoring. This kids do not have an advocate to be on their side and slip through the cracks. I’m so proud of you and Brian and will be pleased to see how God works in Josh’s life! God has an amazing plan for his life!
Keep on and be encouraged!!
Krista
wow Gail, i had no idea that anybody had ever said such things about Chris. hurtful, huh?! i just know that God has plans that go far above and beyond what is happening in any particular moment of life, and Josh’s struggles with speech etc gave many moments of glory to God.
Tarasview
This is beautifully written. 🙂
Penny
Great post 🙂
Kerry
nicely written… I wish we had been somewhere with early intervention stuff for my Josh. He has improved a lot the last couple of years, but still has more of an impediment than he should.