The Boy who forgot to hear

What is CAPD? :

CAPD affects about 2-5% of children and there are twice as many boys than girls with CAPD.

Central auditory processing disorder (CAPD) is a condition in which the ears and the brain do not work well together. People with CAPD can hear, but the brain has trouble processing the sounds it hears.

CAPD is not an intellectual disability. It isn't autism spectrum disorder, attention deficit hyperactivity disorder (ADHD), or simply "bad" behaviour.

Our journey with CAPD started in 2010 when I had my second child. He was completely fine at birth, there had been no complications. When he was a baby he was often hitting milestones way ahead of the "norm" including walking at 8 & 1/2 months. He was always smiling! (A huge relief when you spend your life working with children with various disabilities and disorders as you tend to over analyze your own kids and be hyper vigilant looking for any kind of signs of issues you see in other kids all too often.)

T was a ray of sunshine. He literally couldn't throw a temper tantrum. He would watch his older brother who could certainly manage it but the moment he tried to be that angry he'd end up laughing hysterically. He was always happy and loved making others happy too.

For anyone on the outside looking in he looked like a normal little boy, and he was.......except for one thing.

Every parent has moments where they doubt themselves. Every parent at one time or another questions themselves and occasionally their child or children wondering if what they are doing is right, or if their child is "normal".

Working as a Developmental Service Worker I was confident if there was anything to be concerned about I'd know. If there was anything "wrong" with one of my kids I'd recognize it.

Every parent feels like they have failed their kids at some point in their lives. Nothing can prepare you though for the feeling of guilt when you know there is something happening with your child but you can't pin point what. Especially when you work with children with every kind of issue you can possibly think of.

When T was 3yrs old I started to get the feeling I was failing. It was in the smallest most subtle signs in the beginning. Which is why I doubted myself. Was I imagining things?

Was I making something out of nothing? Over analyzing?

For all intensive purposes he was a "normal" active, silly, wild little child. He was happy, learning and growing and had lots of friends. So what was the problem?

Even to this day it's hard to describe it properly to someone when they ask. It was like he "just didn't get it". You'd say something to T and it was like the message wasn't getting in clearly. Unfortunately it was also unlike the issues I was most familiar with. I couldn't pinpoint what was going on but I couldn't ignore it either.

One time when he was about 4 yrs old I asked him to get me something out of the linen closet. Every child in the house including those who weren't my own biological ones knew where it was. T looked at me with a completely blank face and asked "what's a linen closet?" like it was the first time he'd ever heard the word. He did that about the microwave too. Simple strange things.

Once school hit I no longer had my doubts. I knew something was happening with him but I STILL could not put my finger on what exactly it was.

It wasn't ADHD. I knew that all too well. It wasn't ASD or Asperger's, again I knew those signs too. Even the most subtle ones. I could pick out OCD and behavioral issues a mile away. It was what I did every day.

I knew learning disabilities or delays in whatever form you wanted to label them and over the years the labels change but the issues remain the same. It wasn't something I didn't know anything about. I went to school for this. I studied disabilities and disorders people have rarely ever heard of and everything that went along with them. It was how I supported the people/kids I worked with.

How could I be failing so badly at supporting my own child?

You could ask him something until you were "blue in the face" as the old saying goes, and he wasn't intentionally ignoring you. He'd say "yes" or "ok" and he intended to do what you wanted of him....but he couldn't. It was frustrating. He was (and is) a good kid, but there was just something I couldn't put my finger on.

T went from being a happy-go-lucky kid at home to a whole different kid at school. He was so quiet in kindergarten that he was marked absent more times than I can tell you! I was less than impressed with the school in all honesty for several reasons not only involving T's experiences there but his big brother's as well. Situations in our lives required a change and so we moved houses. A new school was added to the change as a result. I'd heard positive things about the school and had my fingers crossed things would change for the better.

It didn't. I couldn't tell you how many days I sat with him at bedtime while he cried his eyes out. His message was always the same. This happy child who I would give my life for in a heartbeat was now constantly full of anxiety and sadness. It was crushing both of us.

"I have NO IDEA what's going on in the day" he would say. A 6yr old was able to communicate that but when it came to understanding things that was a whole different thing. How could that be though? He was smart! He knew everything he was supposed too.

His teachers in the first, second and third grades were very supportive and understanding. T was always one of the kids who teachers seemed to have "issues" with in the day.

I remember one particular meeting with his one teacher and she said "It's like all the other kids understand what's going on, when a teacher is coming (if they were doing something they shouldn't be which all kids do), and he's the only one left to get the blame at the end because he's doesn't get it". It was true! T would follow his silly side and get involved in things I'm sure he wasn't supposed to be doing. I was happy in a way because he wasn't sitting in the classroom so quiet in the day that he went completely unnoticed anymore, however, he was now getting attention but not the kind I wanted him to get either.

Working as a behavioral support worker meant I wasn't one that was going to let my child away with acting inappropriately in school without facing some consequence for actions. He knew right from wrong. The problem was however he didn't know more than half the time what was going on. There were the odd few teacher's who disagreed and claimed he was "just being bad" but that didn't make sense because that wasn't the kind of kid he is.

I am first and foremost his mom and with that comes the responsibility to guard and protect him as well. His emotional and psychological health was taking a big hit.

I picked him up early from school all the time. He couldn't cope with full days. It was WAY too much for him. I homeschooled him and his grades were always A+ - B-. He was a smart kid.

He pleaded with me to change schools. He begged for me to homeschool him full-time. I told him I was willing to take whatever measures we needed too but that I wasn't going let him just run away from a problem either because more often than not when you try to do that, the problem follows you.

I'd had issues with T in kindergarten being shown videos in school that were not age appropriate. It had a massive negative impact on him. At school he would keep it together, and at home at night he would have breakdowns, and anxiety over what he'd seen in the day. Why? Because he was subjected to it, and he couldn't understand it. It haunted him.

One winter in third grade I got a call from the school. T had left the school. He was upset and had walked out.

My vehicle was in the garage being fixed so I threw my boots and coat on and on one of the coldest days of the year I went running down the block towards the school.

4 blocks away I found him with his broken leg, in tears hobbling down the frozen snowy streets alone. No one was there! No one! He was blocks from the school and alone.

Because T's ankle was broken he had to stay inside during break time and had been in a room unsupervised. Some older kids there had been watching something on an ipad and T had seen something that had upset him enough that he couldn't cope with it. He "needed me" was the only thing he would tell me. To this day I thank god I worked from home and had the ability to go and get him. What if I had been 30minutes away at work?

I'd had it! He was at a breaking point.

Days following I contacted the school about the attendance system when I was called 2.5hrs after school had started one morning and was told T was marked absent. I called the school and they confirmed he was in fact in class, but the response I got from the principal when I voiced a concern over a child with a history of leaving the school being reported as absent hours after school started was less than acceptable. It was deplorable in all honesty.

I set up a meeting. T's teacher was very supportive and apologetic and understanding. Things were being put into place. I was not going to allow him to be put in danger.

A discussion with a neighbour a few days later had me booking an appointment with our Pediatrician. CAPD was now finally on radar. Years of study and training, work experience and meetings with teachers and it was only then coming up to surface as something T was possibly struggling with. I felt like such an idiot! I should've known this. This was what I did right?

Our Pediatrician is fantastic and understanding and got him in right away. T was tested in one of the local hospitals and the diagnosis was in! CAPD with main concerns in the Auditory Memory functioning specifically. Now things made complete sense!

T could hear. He could hear perfectly. His hearing had been tested at birth. He had a rough year when he was about 2 and had been pulling at his ears and has a constant runny nose. He'd been checked for ear infections and was ok. His hearing was tested to make sure there wasn't any issues there. It had all come back fine.

T could hear everything great. The problem was his brain forgot what he'd heard before he had time to process it.

So he had been bang on with his explanation all those years ago when he'd said he had NO CLUE what was going on in the day. He didn't!

T was 9! I felt like SUCH a failure. It still stings to this day to know that for so long he struggled without the support and help he really needed.

Testing for CAPD isn't often done until around this age anyway but that doesn't change the fact that SO many negative situations and experiences he endured could've been avoided if we had known sooner what the real issue was.

I'm writing this today in hopes that if it helps one other kid not have to go through all that it will be worth it!

Last year when I began the process of putting support measures into place for T with the school was having one of the toughest years for him in school so far.

He was bullied by teachers who refused to believe that he actually had the diagnosis. He was belittled and punished for things he couldn't control or cope with on his own whether anyone else wanted to admit it or not.

He was shown videos AGAIN in class regularly that were far above age level. He would get upset.

I pre-screened videos for him at home to make sure he could cope with the material in them. He trusted me to protect him and I was going to make damn sure this time I made up for all the times I couldn't before. When T was smaller he never even liked t.v. or movies much. Made sense.

For years his teachers would comment that he "seemed immature for his age". This made total sense too because for so long he had gone around without the complete understanding of someone without the disorder who gets %100 of the information.

His teacher read a story to the class one day and then couldn't understand why T got upset by it. I'm still not sure to this day that particular teacher understands what Auditory means! Reading a story to him means he misses some of the info. He won't let on that he doesn't get it. Until the day is done. Until it's quiet and he can talk to me and think back on the events of the day.

You see T's spent YEARS figuring out how to cope. How to fit in. How to manage his days without all the info you and I get. Without help. He's learned how to look like he knows what's going on. He copies other kids. He told me this many times.

2020 was a good year for us in the sense that T got his wish to be full-time homeschooled.

Not distance learning, but traditional old school "homeschooling".

One day when he was sitting down with my mother working on some activities and he said to her

"You know Grandma I love homeschooling because I don't have to be afraid anymore" and my heart burst with happiness knowing he finally felt safe, and at the same time it shattered into a million pieces knowing how many years I sent him off daily to school to endure entire days of fear, frustration and confusion.

Scared to get in trouble if he didn't do something right, or good enough. Scared if he couldn't cope in the day and did something that got him into trouble. Scared because he had "No clue what was going on" and no one believed him.

Scared to go to school!

I started working with T on auditory memory skills/exercises to see if they would help and there were definitely patterns in areas we could see where different sounds or words were worse than others. We practiced a lot! We could see areas where the issues were way worse than others.

2021 is a blessing above anything I could've hoped for. T was scheduled to be re-tested and this past week we went in. His test this time showed he's improving to be on-par with normal levels for a 10yr old! I could have cried I was so happy. He will mature out of it.

So many kids with so many disorders or challenges don't get to be that lucky! He will hopefully go on from here and start to mature and improve on skills he had been lacking in from trying to cope with the CAPD. It will take him some time, but he will catch up.

A child's hearing develops as he or she grows older. Children can mature out of the condition by the time they are around 13-14yrs old and that part of their brain is fully developed. Continuing to develop skills over time can help a child cope with CAPD.

Children also develop coping skills of their own. They lip read without really knowing it. They use behaviors to get out of situations where they are completely confused or overwhelmed. The list goes on depending on their area of processing difficulty.

Parent's and family members or caregivers/teachers can develop strategies too like :

1. Reduce background noise whenever you can.

2. Teach your child to watch the person who is speaking - a HUGE one for us.

3. Help your child learn organizational skills - T still struggles with this but hopefully will improve.

4. Have someone take notes for them. (If we had known this would've helped reduce the frustration for T at school a lot! Writing things down while trying to understand them with CAPD can be more than challenging. Reading the material back can help make sure all the info is taken in correctly!)

Symptoms of CAPD can include:

• Difficulty following directions

• Frequent requests to repeat information

• Trouble distinguishing between similar-sounding words - (a weak point for T we noticed once we started the auditory memory exercises. Words like: peace, peach, share, cheer etc were all easily confused and hard to comprehend for him).

• Lack of focus, especially in noisy surroundings

• Impaired memory for nursery rhymes or song lyrics

• Struggling with reading, spelling, speaking, or rhyming - (T struggled at first with reading)

• Mixing up the order of sounds in words or numbers in a sequence - (again an issue we saw big time in the exercises).

• Inability to follow conversations - (one reason he had such a hard time with videos and movies. All listening and too hard to follow. Often he'd ask me "what are they talking about?").

• Trouble expressing thoughts and feelings clearly - (T worked on this and was pretty darn good at it for a little kid! )

I needed to share this post. It has been high up on my list topics and something I've shared before on my social media.

Why? Because if I had read something like this years ago, or someone had shared this and I'd seen it maybe things would've been a lot easier. Maybe we could have made the first 5 years of his school life a lot more enjoyable.

I hope that anyone with any doubts or concerns about their child who reads this will find something helpful in it. I hope it gives the parent questioning themselves the strength to trust their judgement and get some answers and hopefully a lot faster than I did.

I hope it brings CAPD onto more teacher's and support workers radars and most importantly I hope it helps any child who might be struggling get support sooner than later. 💕