What It’s Like to Raise a Child with ADHD (and Autism)

There’s a lot of information about kids with ADHD/autism out there. You could go to any number of sources and learn more about raising a child with one or both of these disorders. So, I thought it would be good to share my story, so you know what is unique about ParentingADHDandAutism.com, and know you’re not alone in this special parenthood.

I am honored that our own resident emotional health expert, Jackie Flynn, invited me back on her Parenting in the Rain podcast to share my story, as well as the #1 thing I’ve learned about parenting kids with ADHD and autism.

In addition, I am reposting my very first blog post ever, from my former website, {a mom’s view of ADHD}, posted November 5, 2008, just three weeks before my son’s evaluation and ADHD diagnosis. It was fun to go back and read it and see how far we’ve come the past seven years since. It was also heartbreaking to be reminded about just how down my sweet little boy was, and still is sometimes.

 

Listen to my podcast interview with Jackie:

 

Read my very first blog post from 2008:

In school, I remember thinking that LD students were unintelligent — incapable of what we normal students could accomplish. That was the general understanding for most of us growing up and it is still the assumption of most people not experiencing the LD system. A truly unfortunate assumption.

I began the journey to an LD “diagnosis” with my 1st grade son, [Ricochet], this September when I realized his school performance was consistently well below his exceptional intelligence. In kindergarten, his teacher complained about his behavior and lack of attention and lack of interest in learning. Our family found two reasons for this at the time: (1) his teacher returned from maternity leave at the beginning of 3rdQ with her infant in the classroom FULL TIME; (2) Ricochet’s birthday is the cut off day (Oct 16) in NC for entering kindergarten and we felt his immaturity played a role. There are many, many other small factors but these were the major players, in our minds.

My ADHD StoryRicochet was very sad during most of his kindergarten year as seen in this photo from that Easter. He often felt defeated. It breaks my heart to see him so easily upset and broken-hearted.

So, we made the decision to remove our children from the charter school our oldest daughter had attended for three years with much success. We placed them in mainstream public school this year based on the disagreeable administrative decisions and “loose” environment of the charter school (the fact that an infant would be allowed in the classroom with its mother, the teacher, was appalling to us — the top priority in that classroom for that teacher was her infant, not her 18 kindergarten students). All summer I held my breath hoping for Ricochet’s success in first grade in a new school. I realized in the first two weeks of this school year that the change in school environment, in administrative policies, in teachers was not, on its own, going to be the difference for Ricochet. He was again coming home almost every day with reports of disruptive behavior and inattentiveness in the classroom.

But the difference began this school year with his new teacher. She realizes that every student, no matter capability or performance, learns differently. She realizes that some children need their own space, need rewards daily instead of weekly, need to move to focus and learn, etc. She realizes that school should not try to put all students in that round hole no matter if they are a round or square peg, or something in between. I cannot put into words the gratitude I feel for this teacher and the placement of Ricochet in her classroom!

And so, something sparked in me. Here we were talking about how intelligent he is in one breath and how poorly he is doing in school in the next. His kindergarten teacher and aide told us the same thing. Now his first grade teacher was reiterating again how very smart he is but how he doesn’t place on any of the Rubric first grade testing scales. I assumed it was his inability to sit still and focus on the tasks that didn’t involve imaginative play or computer games (his favorites) so I began hours of searching on the Internet for ideas to help him, answers to why these things are a struggle for him, something other than ADHD which his dad and I were so sure couldn’t possibly be his fate. (We were so sure of this because he can play his Nintendo or computer games for hours at a time if we let him.) The more I searched “can’t sit still,” “behavior problems in school,” and “poor handwriting” the more I kept coming back to Sensory Integration Disorder. So I went to the public library and checked out the one and only book they have on the subject, The Out-of-Sync Child by Carol Stock Kranowitz, MA. It was like reading a textbook study of my child. It was a bond for so many little (and some not so little) things that troubled us for Ricochet, and so many traits that we didn’t realize were signs all this time.

[Tweet “Here we were talking about how intelligent he is in one breath and how poorly he is doing in school in the next. #ADHD”]

In my search for more information on Sensory Integration Disorder, I began reading books on learning disabilities that mentioned SI Disorder. Reading these books lifted a veil. Not only did it open my eyes for my own child and what I needed to do to fight for his success in school, but for all the children with “behavioral” problems in school. After all this research, I am convinced that 90+% of children with low grades and behavioral problems in school have a learning disability. In a nutshell, here’s why: Inability to accomplish what peers are accomplishing and teachers are expecting leads to frustration; teachers and parents seeing laziness and stubbornness as reasons for school failures creates more frustration and anger; never measuring up leads to giving up; anger and low self-esteem lead to acting out and behavioral problems. The path from one to the other is really quite simple.

I wish I had started journaling our journey at the onset but I was at first so consumed by the need for discovery that I didn’t take the time to reflect.

Here’s a synopsis of the events of the last eight weeks: During my time of research and exploration, Ricochet’s teacher and I had an ongoing dialogue about what she could do in the classroom to try to help him. She separated his desk from the two large groups and put tape on the floor around his desk to signify his space and she allowed him to move within this space without being punished for not being still and paying attention to the lesson.

She noted that he really was paying attention when his movement seemed to signify otherwise. She created a daily behavior chart with the two items he needed to work on most and gives him a sticker during each item on their schedule that he accomplishes his his two target tasks. He went from getting red or orange every day (the two worst on the behavior scale in the classroom) to getting purple (the highest) almost every day in about five weeks time.

I requested, in writing, that he be evaluated by the school (this process has barely started) — this request must be made in writing when your child’s disability isn’t as obvious as a physical limitation or a speech problem or the like that the school automatically acknowledges. The school resources are too thin to test every child that might have a problem but they are required by federal law to test if a parent requests it.

Ricochet has gone from barely reading the Level A books to fluently reading the Level F books. He would fight doing homework each night and wanted nothing to do with reading, but now is somewhat agreeable to doing homework.

I was able to figure out that he has a pretty significant fine motor disability on my own — his handwriting is not remotely legible, he writes in a mix of upper and lower case, can’t stay within the lines, he cannot draw shapes, or even accurate stick people, and he cannot use scissors with any real success. He excels in reading and math though and he can spell.

His teacher recommended him to the “Care Team” leader as being at risk at the same time as she recommended him to the gifted teacher. The gifted teacher passed on him for her program much to the disappointment our disappointment, because we know he belongs there. The Care Team has met twice so far on his behalf and have tested his hearing and eyesight (both fine) and asked the teacher to bring in a couple new tools to work extra on his handwriting and to try to help him stay on task (he doesn’t do this without adult supervision). They are meeting on 11/19 again and I have invited myself.

Ricochet is also being evaluated at a private center here in Asheville, on 11/24 at the recommendation of his pediatrician. We decided on the additional private evaluation (despite the fact that we can’t afford the cost) so they can evaluate for ADHD and Sensory Integration Disorder which the school will not do. I will, of course, blog more about the processes and outcomes of these evaluations as they progress.

I will chronicle our journey through the school system bureaucracy and the private evaluations to identify, work through, and most importantly, overcome the obstacle right now impeding Ricochet’s school success. Just through reading many books over the last eight weeks, my eyes have been opened to what LD truly is and my hope for this blog is that others on this journey will share information with me and each other through this forum to support each other on this similar journey.

 

I’ve shared my story; now share your ADHD story in the comments below.