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Not quite "Typical", Not quite "Special" - For the mom of the undiagnosed child

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    I’ve written this, my story – my son’s story – for all the moms out there who are in this awkward state of quasi-“special needs” but have no real claim to the title.

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Not quite "Typical", Not quite "Special" - For the mom of the undiagnosed child

When I wrote my first post about special needs in 2013, as a way of encouraging my friends whose sons had autism, I was writing as the mom who “wasn’t one.” I was the bystander. I had the child who was soaring, soaking up information like a sponge – so far ahead of my friends’ boys who couldn’t eat or talk. The gap was obvious: my son was typical – their sons had “special needs.”

Now, our boys are four, and that gap is still there. Sara’s son is still on a feeding tube. Kathryn’s son still only eats a handful of foods. There are still therapies, special education, IEP meetings, and so many other things that these boys go through on a weekly basis that I will probably never comprehend.

But as age two turned into three and three neared four, I started noticing more and more about my own son that was different. There were no developmental or cognitive delays, but his behaviour was taxing. At first, I chalked it up to those terrible twos – hoping that the threes would offer some relief and maturity.

After he turned three, everything seemed even harder for him. 

He was always the one making a scene or getting in trouble. We started getting reports after mom’s group of aggressive behaviour – hitting, spitting, kicking, tantrums.

He’ll get over it. He’ll outgrow this.

But it just got worse. The days got longer and harder. The arguing more incessant. The screaming louder and more frequent. Night-times continued to be a fight. And as he got bigger and stronger, his behaviour wore on me more and more. And nothing…I mean, NOTHING…we did as parents seemed to work consistently.

My thoughts started to change from What am I doing wrong? to Have I missed something?

Finally, we took him to the doctor. Our first evaluation, a developmental screening through a local non-profit, took place in February of this year. They told us that he was a normal, typical little boy. “He shouldn’t be drinking so much juice. He’s not getting enough physical activity. If you want someone to come out to your home, we can show you how to play with him.”

Perhaps I should have taken them up on that offer. But I was consoled by the words normal and typical. I didn’t really need help knowing how to play with him – I needed help knowing how to get him to behave.

They recommended seeing if he could qualify for special education. A few weeks later we had our evaluation with the school district. He passed with flying colours. “He doesn’t have Aspergers or Autism. He’s not developmentally delayed. He doesn’t qualify.”

Relief. Followed by frustration. 
Because we still didn’t have any answers, and the behaviour just kept getting worse.

So, in the midst of screenings and evaluations, we enrolled him in private preschool.
“He had a rough day again today. He hit Ms. Susan. He spat at his friends. He had a meltdown.”
The negative reports kept coming and coming. Not every day. But more days than most.

School ended for summer break. And for the first half of the summer, I felt like there was relief. He had finally figured out how to poop in the potty. He seemed to becoming more independent. And then…bam…another wave of awful behaviour, this time more vicious and terrible than any we had seen thus far.

As I vented to my closest friends whose sons have sensory needs and Autism, I felt more camaraderie with them with each passing day. My son seemed to have more in common with their boys than he did with the typical 3-year-olds I knew.

I know he doesn’t have Autism, but… started preceding sentence after sentence as I related to them my reality of mothering this high-needs, challenging child.

And they listened. They validated. They saw the needs as being – while not quite the same – comparable and difficult in their own right. They encouraged me to keep seeking additional help for him.

I scheduled another appointment at Ezra’s doctor’s office and sat down at my computer to chronicle the first almost-four years of his life. And instead of seeing individual trees, I saw a forest. Breastfeeding issues, sleep problems, behavioural problems, lack of personal independence, delayed personal grooming, and a mild delay in fine and gross motor skills.

There’s got to be something going on here. There just has to be.

The signs were pointing to “sensory processing” problems and I was hoping that he might qualify for occupational or play therapy. And so, I went armed with my document, ready to advocate for my child.

“What do you mean by sensory problems? Why are you trying to give your child a pathology? He seems typical to me. He doesn’t need occupational therapy.” 

Mama Bear came out. I got angry. I fought. I demanded. The tears were pushing out, but I stayed strong and asked to see her attending. That lit a fire. The referral was put in, and I left. Had I not had a kicking and screaming child underfoot, I surely would have found a way to speak to someone else.

Oh the emotions I felt that day! The self doubt: What if I’m just imagining this? What if, because my friends have these problems with their kids, and they are so awesome, that this admiration of them has turned into me making stuff up to be like them? What if I’m crazy?

But, with each day that passed, each time they called me from the summer daycare program, each negative report from the church nursery – I knew. My son’s needs are beyond typical.

The occupational therapist we saw didn’t see enough to let us qualify for OT. Is he a sensory seeker? Yes, for sure. Beyond the typical range? Not so much. She encouraged me to work harder with him. Encourage him into independence. Stop doing so much for him as far as personal grooming. Take the time to manipulate his hands and teach him how to use scissors. And she recommended a behavioural therapist, which, of course, we wouldn’t be able to see without another trip back to the pediatrician for a referral.

I gave it my best shot. But my attempts to coax my son into independence were met with resistance. Getting dressed in the morning went from me forcing said wiggly child into clothes on my own (because it was just easer) to a half-hour’s worth of saying the same things over and over, dealing with him screaming I can’t do it! and It’s too hard for me! and clothes and shoes flying across the room.

Why. isn’t. this. working?

Finally, I just started counting down the days until school started back up.

Surely, the routine of going to school five days a week will help!

We saw his paediatrician and an attending developmental behavioural paediatrician the week before school started. Finally – this doctor listened. He recommended a behavioural therapeutic day school program, a preschool replacement. And a behavioural therapist. More referrals. 

School started but there continued to be more phone calls home. More physical aggression, this time far worse than what we experienced in the spring. More spitting and hitting and kicking and tantrums and being completely unswayed by timeouts and reward charts.

The behavioural therapist we had been referred to sat down with me. I told her our struggles.
He’s a challenging child. There’s definitely something going on. We think it could be sensory related. We want him in our behavioural therapeutic day program.

Relief. Anger.

After seeking answers, finally someone saw what I saw. Why it had to take nine months, I’m not really sure.

The very same week my son was expelled from his preschool. It was such a weird place to be in for sure. Having a child as of yet undiagnosed, unlabeled – yet whose needs were so far reaching, so much more than the needs of the “typical” or “average” child.

A diagnosis doesn’t fix anything. But when it’s time to leave the mall and you are trying to put shoes on a 4-year-old child who is screaming literally at the top of his lungs, “Leave me alone!”…and seeing the looks on people’s faces…Sometimes I think it’s easier when the mom can say, “He has xyz.” Because when there’s a diagnosis or a label, at least there is some measure of understanding from the general public.

An accurate understanding? Not always. Complete understanding? Probably never. But there’s something that they could go home and Google if they really wanted to know.

Instead, all I had was a screaming child and no real answers. No way to explain why he’s acting this way.

And so, the comments came:
You just need to be consistent!
Consistency is key!
Remember, you’re the mom!
He’s the child, you’re the parent. Remind him whose in control!
And I want to scream, or punch someone, or just say, “You have no freaking clue. It’s not that simple. It’s never been that simple.”

At the end of September, Ezra was given an initial diagnosis of ADHD and adjustment disorder that manifests itself in a mix of emotion (anxiety) and conduct (behavioural problems). As he goes through this behavioural treatment dayschool program (which exists soley for typically-developing children who have “behavioural and/or emotional disorders”), he will have another speech evaluation, another occupational therapy evaluation, and another diagnostic evaluation with a developmental behavioral paediatrician. His diagnoses could change or be further defined as he goes through this process.

At his new school, which he started October 6th, 2014, he is surrounded by a team of therapists. A therapeutic preschool teacher, recreational therapists, creative arts therapists, behavioural therapists, and a licensed clinical social worker – all assigned to his case to help him learn to cope with life. We have already started to see improvements. We don’t know how long he will remain in the program, but the average stay is 6 months, with some children staying as long as a year.

I’ve written this, my story – my son’s story – for all the moms out there who are in this awkward state of quasi-“special needs” but have no real claim to the title. For the moms who have put in the hours at the doctors office or the school district and had the evaluations – but come up empty. For the moms who are seeking help and answers, but can’t seem to get anyone to listen.

For the mom who feels alone in the typical world, but still remains on the outskirts of what seems like a privileged “special needs” community. You know that “special needs moms” are exhausted, running ragged from therapy to therapy – but sometimes you envy them, because at least they have an answer, they have professional help. You’re just left with your child, alone in your quest for answers.

Maybe, the badge of “special needs” really isn’t all that important. What is important is you. Because you are doing the best you can. You find creative solutions, even with limited resources. Your tears and sighs are not going unnoticed.

Maybe this path won’t land you and your child with a diagnosis. But maybe it will. And in the mean time, you’re not alone.

Beautiful In His Time

Beautiful In His Time is a very personal space where my goal is to share my experiences of finding God’s beauty in my mess. I do this for my own personal growth, but also in hopes that I can encourage others to do the same: I hope that you, too, can open your eyes to the beauty that God has for you, in spite of your mess.



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