Nicholas’ Story: A Mother’s Words Part 2
Last week I posted the first half of my question and answer session with Gina, a mom whose son Nicholas was born with severe oral and verbal apraxia, hypotonia and sensory processing disorder. Last week's post discussed how their journey began focusing on the beginning stages, starting with homecare. Now Nicholas is 7 ½ years old, in second grade and their story continues:
How is Nicholas' speech and language now? How is he doing in school?
Nicholas attends a special language program through the school district. His teacher is a speech pathologist. Reading comprehension continues to be an issue and writing his thoughts down is a work in progress. Simple math facts are also difficult to recall without always using counters. Even though he is a smart kid with a pretty high IQ these things are hard for him, as is handwriting. Emotionally, since he did not talk until the age of 5 he seems to be a bit immature for his age. I believe this is because as most kids talk by the time they are 2 and 3 and figure out the social scene, Nicholas was not able to go through that part of life because he was non-verbal.
Do you feel the years of being non-verbal are still impacting him today?
The years of being non-verbal are unfortunately impacting him today. I was so concentrated on just getting him talking that I really did not look beyond that. Nicholas is diagnosed with an anxiety disorder now. When presented in school or in everyday life with something he perceives to be hard or that he will fail at, he has a meltdown. He tries to do everything just right and is afraid to try anything new. A lot of this is believed to be due to the fact of so many years of KNOWING he was unable to speak even when he tried and as I also mentioned, he is immature for his age.
Share some examples of the milestones his has speech made over the years.
Again, Nicholas never babbled. He communicated by humming "mmmm" and pointing. When we introduced him to sign language it was like a light bulb to him and you could see it in his eyes how happy he was to use it. As a matter of fact even now in the middle of the night if he wakes up for a drink of water and you bring it to him when he is half asleep he still signs more. I just have to give it to him because it's so cute. It brings me back to those days when he was so silent.
Nicholas began to be able to use jargon babble at the age of 4 ½. I was so hopeful hearing all those sounds coming out but he would just get more and more frustrated because he would walk up to you and all that came out of his mouth was a bunch of sounds that were completely unintelligible . At this point I had trialed many talking devices through PIAT-- a program at the Temple University's lending library. He took to it very well but since his voice was starting to emerge he wanted to use the devices less and less. He PREFFERED his voice. I knew I had to do more to help him. I sought the advice of an advocate and began to look for programs for children with severe speech and language needs. I came across a special program in our area. Nicholas was able to attend the program via a scholarship he was eligible for as a preschooler from May to July. He was 4 ½ years old. The amount of progress in those nine weeks was astounding. For the first time he was calling me "vada" for mama. After starting the program those sounds became approximated words, and my hope for him speaking got stronger and stronger.
Over the next 2 years that followed, Nicholas attended the program and school. The Association method which was what the program used, worked for him. I was excited and thrilled as new sounds were worked on and stuck in his everyday language. I still remember him getting that E and S down into everyday speaking. Today Nicholas is understood by all. He graduated the program after 2 years. He still has some sounds/letters like th, l, pl, and R to name a few that he still needs to work on. Past tense verbs are hard. But Nicholas speaks and really talks quite a bit now!!!
Can you share more about the strategies that worked for Nicholas?
Some of the strategies that worked for Nicholas included attending a program that uses a multi-sensory approach. He was able to receive 3 hours a week of sensory based OT using the DIR floortime method, and 8+ hours of speech and language. He had a half hour of individual speech every day 5 days a week. Again it was the Association Method which worked for him. He worked on speech sounds individually in his speech sessions by blending them. For instance if it was "mmm" that he had, they would build on it with M-A, M-OE, M-EE, etc. Since he did have a lot of sounds at this point they were able to take those sounds and have him blend them with other sounds very exaggerated. Once he could easily do a certain sound then it was worked into the Association Method during "method "at school, practicing it every day at school. It was a lot of repetition. Then they built on those sounds with new sounds. For Nicholas this program just seemed to click. It's like his brain was able to finally organize all those sounds he had. I must also mention that since he also had oral apraxia and forming sounds was difficult putting his mouth in certain positions. The PROMPT method was very instrumental in helping him achieve those sounds.
Thank you for sharing more information about the strategies that worked for Nicholas. I feel both parents and therapists need to know and understand what children like Nicholas need to be successful. Why do you feel is it important for both parents and therapists to know and understand your story?
I feel it is important because I want therapists to know what helped my son, an intensive speech and language program. I also want to give hope to some parents who may have lost that hope. It was always encouraging to me to hear other parents' story, it would give me the hope that I needed.
Is there any additional information you would like to share with readers today?
Yes, I forgot to add that I think when a kid is as severe as Nicholas it is VERY important to pull back and read the child's cues. I wasn't always good at doing this for Nicholas and it was a very intense program for a 4 ½ year old. It's important to also give breaks and step back to let a kid be a kid. We are doing this now and he is SO much better. It's what the therapists call a "therapeutic break" and I think it's very important almost as much as therapy!
I am forever grateful for the speech and language based program my son attended. It helped my son to find his voice. I was very lucky to find them. I want readers to read this and if their child is severe like my Nicholas was to find a program that works for their child. Find a speech and language program that is intensive where you can see results. Find a program where they work on all your child's needs. Be your child's advocate and do not give up hope. Seek other parents and join a support group and learn from others who have been through a similar experience because you are not alone!
Thank you to Gina for being willing to share her inspirational story with us.
I hope that our readers have gained both knowledge and hope reading
about her journey with Nicholas!