I have been considering writing this for a week now, not because I want sympathy but because there are special needs parents out there who need to know you are not alone in your feelings. They are real, and for the sake of your child, you will come through to the other side if you don’t give up!
Last week, my husband & I got an email that provoked a feeling that was only too real. If any of you have read my book, I talk about the regular PPT meetings that special needs parents experience throughout our children’s school years, where you sit there and hear about everything your child can’t do and the IQ scores they don’t have.
Sam, our 33-year-old amazing son, graduated 12 years ago and attends an excellent adult day program. After many behavior issues and challenges, many tears, and requests for a one-on-one and a behavior assessment to help him, his work finally obtained the special funding to acquire one.
For a moment in time, I was brought back to those years when I would sit through Sam’s PPT meeting, knowing my son was one of the lower-functioning students (if not the lowest), and be taken aback by the age-numbers of his psych-evals. The emotional drain was intoxicating. More often than not, I would leave those meetings and cry about just how unfair life sometimes can be.
Fast-forward to last week. Although we had requested this assessment, the numbers took us back. The first time I read the report, it hit me like a ton of bricks. To see things in writing like severe nonverbal autism or severe intellectual disability functioning at a very young age initially blurred all the good in the report.
It took me a few days to digest it, and realistically, the numbers may not be totally accurate, as it was not as in-depth an assessment as we’ve had in the past. Yet, seeing things in writing can sometimes jar you. Sometimes, we forget that our loved one is more than a diagnosis on a page or a number.
The report contained so many beneficial aspects. This doctor understands autism and provided some good insight, as well as instituting a behavior plan to work with Sam.
I knew I had to give it a few days to process and then return to it. Yes, the numbers and hard things may be there, but we are grateful for someone who is in the field of autism, who understands the nuances of the syndrome, and who can help all those who are involved with Sam navigate it a little better. To hear that sometimes, when he behaves as he does or doesn’t, it’s not to be defiant, but how his brain regulates all that he’s taking in.
No one likes to hear that their child is the lowest at anything. The reality is that we have been on this journey for a while. I remember when Sam was placed out of district for many years of his life to schools that dealt with special needs only. During his last few years of school, the town had built a new high school with a wing for our special needs kiddos. I remember sitting at one of his first PPT meetings with the principal and knowing Sam was a guinea pig, so to speak. The town had never had someone of his severity at the high school and there were things they didn’t know how to deal with. Although it was a sometimes rough transition, the gains were significant. Sam ended up being able to be a part of the track team, thanks to a retired gentleman who saw the potential in him and a high schooler who was willing to run with him. Individuals in the local neighborhood stores got to see who he was, thanks to trips in the community.
I am thankful that Sam is in a great program and has a wonderful one-to-one, as well as other great staff who work with him and are willing to learn new things to help him.
Once again, I’m reminded that good can always come from the not-so-good or challenging. Although I have sometimes felt like that squeaky machine, as I continue to fight for my son, I know that he is so much more than a number on a report. I know that his brain right now may not function like a neurotypical brain and may cause him to yell as a relief from being nonverbal, but I also know what joy his smile and giggle can bring to the darkest of days.
Sometimes, flashbacks can bring you back to painful emotions from years gone by, as though you were right there, but in that same breath, they can remind you that you made it through, and you will make it through again!
Remember, we all have gifts and weaknesses. Your voice might be the very one needed to help someone who isn’t as able as you. Use it for good. Your child is a gift, and you are equipped with all that you need to be their voice!
SHEILA BOUCHARD 