As a parent of a child with Auditory Processing Disorder (APD), I struggled for years to put a name to an invisible disability; this doesn’t need to be the case. We must find ways to connect children with the right health-care professionals early – much earlier than we were able to.
Besides reporting his tendency to be very quiet and “self-contained,” my son’s kindergarten teacher had only praise for him. After kindergarten, he was accepted into the gifted program; though we decided against putting him in.
At our particular school, experienced teachers taught my son with assistance from a teaching aide all through the elementary years. He had had all the supports in place for helping him when he needed it. Of course, I did not know he needed help. His report cards from grades 1-3 were an uninterrupted succession of As and comments about how well he was doing. He didn’t need my help with homework at all. But, all the extra help vanished when he entered grade 4. Grade 4 is the transition place from elementary school to the more demanding life of junior high.
Grade 4 – Things Began to Unravel
My son began to falter and lost his way in schoolwork. He was no longer able to get his assignments done. His notes were absent or disorganized. I observed him in class and noticed that he was moving his head around in a searching “satellite dish” sort of manner; as if attempting to localize sounds. I thought he was simply goofing off and not paying attention. The entire grade 4 year was spent organizing my son, helping him learn after school and asking for extensions and help from the teacher.
I had No Clue there was a Medical Condition Involved
I blamed my son for what everyone told me was his “immaturity”. He was the youngest child in his class. They told me he would grow out of this disorganization; that his memory problems and difficulty with independent work would disappear.
Looking back, I realize now that I simply lacked knowledge about disabilities and how they should be managed in a school environment. I now know that it is not normal for a child to come home without any idea of what happened in class. It is not a case of immaturity if your child has to go in after school and parents have to divide up course material to review with the child (and then force-feed all the information for tests and exams).
All of this extra work on our part was a mistake; but we didn’t know what else to do. It was very difficult for our son and he was extremely stressed; a fact that became evident on the first day of grade 5, when he lost the feeling in his legs and had to be taken to the emergency room. They found nothing wrong with him.
I took him to a pediatrician who did a full battery of tests including a hearing test. He diagnosed my son with Hashimoto’s Disease and we all thought that the hypothyroidism was the cause of his fatigue, inattention and stress. But, an auditory processing assessment was not ordered. After all, we believed that the treatment of his hypothyroidism would solve all his problems…We were wrong.
His grade 5 teacher became concerned and talked to me about his dreamy state in class. He would be oblivious to her presence until she tapped him or prompted him with a question. She told me he was in a “world of his own.” With my permission, she requested tests. The only problem was of course that the tests were limited to determining his academic functioning.
After the academic assessment indicated that he was bright, there was no other support or help from the school. Despite the fact that he had attention difficulties, no one indicated that I could have him tested for ADHD or any other neurodevelopmental disorders. It was only when I went back to reread the psychologist’s report that I noticed the final line – a recommendation that my son “may benefit from a neurodevelopmental assessment”. So the school psychologist had recognized the possibility of other issues. Why didn’t the school order additional tests when they had the power to do so? I can only guess.
I offer this as a cautionary note to all parents: Don’t accept it when a school labels your child as “LIT.” What is LIT? It stands for (Lazy, Inattentive/Immature, Taciturn) and it is the term used for children like my son who are bright and not performing academically – according to their recognized abilities.
At the end of grade 5, we were told that the school could do nothing more for our son. He was told to “take responsibility” and “work harder.” They told me to let him manage by himself; it was “a maturity thing.”
I had had Enough
Grade 6 passes; and, after yet another wave front report card, where all his marks are up and down from term to term, I had had enough. It is at this time that I had a chance meeting with a nurse who had a child with ADHD. She referred me to a doctor at a local hospital; who, she said, would be able to help. With this new doctor and her referrals, we went through more testing. My son had been tested all through the past few years of school – but, as it turns out, they weren’t the right tests. After being on a waiting list for most of the year, at the end of grade 7, we finally had an auditory processing assessment done.
ADHD (inattentive type), APD and Hashimoto’s Disease; a complex triad of conditions and no one to guide us with their management or his subsequent development of test anxiety.
It was only at the start of grade 8 that I was made aware of the specialized supports that are available for children like my son through a local clinic. Why hadn’t I heard about this before?
A Lack of Experience
After the experiences I’ve had in my son’s case, it seems clear to me that the special education system is not, at this time, capable of diagnosing or dealing with children with APD. There is no expertise in the system and I had to turn to the Internet to find what little information is available; most of which, I found on U.S. sites.
Digging for Information
Even with the audiology report and the information I’ve managed to find on the Internet, I still find it very difficult to comprehend the challenges my son faces.
I have turned to blogs of people with APD to learn how it is to live with this condition; they have provided the practical tools and understanding that I am still acquiring. I requested information from school districts in various parts of Canada and they generously helped me with their knowledge; but, what I found was that supports and programs to assist children with APD are variable and often very limited.
I’m really happy to hear that CASLPA has recently helped to produced much-needed guidelines that will help to legitimize APD and ensure that S-LPs and audiologists under CASLPA’s jurisdictions are treating this disability in appropriate and uniform ways. We now have to work on informing parents, educators and health-care professionals about this hidden disability.
As parents, we are the primary advocates for our children; we must work hard to promote public awareness of APD and end the discrimination and lack of supports for this group of very vulnerable children.