What do we do now?

IMG_1607One of the things that has really been difficult in our house is having the older child have a myriad of special needs. I mean, I know it would be hard either way. What I’m referring to is doing all the work and research about all the issues E has (refer to my first post for a list), learning all the symptoms, all the ins and outs, then adding a second child to raise on top of that.

You start seeing signs and symptoms in all the second child’s actions. Are they in need of help too? Do they have special needs? My child hangs on me every waking moment, is that a symptom? Every decision you make is second-guessed. Every action the child takes is second-guessed. Is that a sign or did they just pick that up from watching big brother do it? It’s near impossible to tell and they sure as heck aren’t going to tell you.

From the beginning, E was different. He never slept, he was extremely fussy, he achieved milestones early, but not so early as to raise a flag. Then he was reading at age 3. From then on, my mother’s intuition would nag me. It’s like, I was proud of him, yet, when other people talked about how wonderful what E did was, or dad talked about how he read at an early age too, I felt like it just wasn’t the same thing. Still, I accepted that I had a smart son and maintained the status quo. He went to preschool, made friends in class and seemed to do just fine. Sure he had regular meltdowns at home or he could do math in his head. So what if he preferred school workbooks to toys from an early age. He was smart and just loved to learn. No biggie. “But, but…” my mind kept saying; and I kept ignoring it. I’m a worrier by nature. I over react. That’s all. He’s just super smart. Maybe he’ll go on to do great things with is life.

Kindergarten starts. Academically, he is the top student in his class but, the teacher isn’t happy with how he interacts with his peers. He always plays alone at recess. I’m thinking, “So what? Dad says he was the same way. He was a loner and didn’t really care about having tons of friends. He turned out fine.” Still… Conference after conference and it’s a problem. Finally, the school psychologist analyzes him. Our GP refers us to a specialist. He gets the ADHD diagnosis. And the downward spiral begins, so to speak.

We start figuring things out as more and more issues start manifesting. The guilt sets in for me. “I knew something wasn’t right. Why didn’t I push harder earlier? I could have helped him sooner.” I’m sure every parent goes through some sort of self-blame game. The thing is, we didn’t know. But, now we do and we are helping.

So now we move to our younger son, C. He has always seemed “average.” He played normal with toys, made friends, was very active and so on. He then goes to preschool and does great. He makes friends and get along with everyone fine. So what if he knew his alphabet before the other kids. So what if he could count so much higher than most kids his age. He’s smart too. He learned a lot from his older brother. Right?

Towards the end of his preschool experience, he starts having meltdowns at drop off. He doesn’t want to go. It’s a battle, but we get thru it and he graduates to Kindergarten. The public school does a screening process for new kids coming in. C tests out great but, he has a few “red flags” that they will watch. I don’t even know what those things are, but they didn’t seem like a big deal at the time. We take him to the autism clinic that his brother got his diagnosis from, to be assessed for any issues. Again, he tests out fine with a few ‘red flags’ but he’s too social for them to officially test him. “He’s fine.”

Now he’s in kindergarten and it’s happening again. He often complains about not feeling well. He doesn’t like how long the day of school lasts. He’s exhausted at the end of the day. We are having meltdowns all the time over the smallest things. He has started asking for tags to be cut out of more and more of his clothes or, he refuses to wear certain things because of how they feel. He is more vocal about what foods he is willing to try and gags at the smell of some (SPD flags!). He is in constant motion. He is never, ever still! He “forgets” what he did in a day at school. He struggles pushing through something he finds hard, preferring the tossing-it-aside-and-crying-about-it method (ADHD flags!). He uses his “outside” voice all the time. He knows how to read, do basic addition/subtraction and even some multiplication, but he doesn’t want us to know that he knows how to do these things.

There is no longer a psychologist at the school. The teacher thinks he’s just an emotionally sensitive kid who may need a bit more time to develop in some areas but, academically he’s fine. So, do we push and fight to “pin a diagnosis” on him? Or do we let things ride a while longer and see how he does? What if he really does have special needs and we don’t help him right away? What if, what if what if…?

What do we do now?

The begining

I’ve racked my brain over and over about how to start off this first post. As a perfectionist at heart, I wanted dazzle, fireworks, jaw-dropping amazement. In short, I wanted perfection. Then it dawned on me, I use the word “I” too much.

Yes, this blog is about me, but it is also about my family and our journey as we navigate between the desires of being an “average/normal” family, and the reality we are actually living. Our oldest son (E) has Autism along with several other conditions that go hand-in-hand with it: Hyperlexia, Twice Exceptional (2E), Sensory Processing Disorder (SPD), Oppositional Defiant Disorder (ODD) and Attention Deficit Hyperactivity Disorder (ADHD). This grab bag of issues gives us good days and bad days. It’s hard on our whole family, but we try to remember that this brilliant boy also knows that he is different and cannot control some of these issues (as hard as he tries). He’s mostly home-schooled with a splash of activities at the public school.

Our younger son (C) is another child with “issues.” We are currently starting the process of figuring out what he deals with but, we feel fairly confident that he also deals with ADHD, sensory processing issues and possibly ODD.

I am hoping that writing about our ins and outs, our discoveries and our disasters, will offer a form of catharsis for me, as the primary caregiver, but also offer insights, ideas and support to others who are dealing with much of the same issues.

The start of this blog coincides with the start of a new regime of sorts in our house, as instructed by our son’s doctor. We are trying positive reinforcements and immediate rewards for good behavior, rather than always scolding and leaving E always in trouble. We are using less talking and more action. The doctor tells us that we will have to deal with it getting worse before it gets better.

Case in point: last night E was ramping up around bedtime, as usual. When instructed to start his bedtime routine, he refused. This is the norm, and we are hoping to make it easier with a new reward system suggested by E’s doctor.

How it works is this: if he completes his routine he can earn 2 points, if he does it right away or without being asked. If we have to remind him another time to do it, he only gets one point. Any reminders after that, he gets no more points. With this system he has multiple chances throughout the day to earn points. The points add up and can be traded in for rewards such as extra video game time or an extra story chapter to be read at bedtime.

Not surprising, he fought us at every step. He earned no points. This made him angry and his ODD kicked in. He started ranting and screaming that he hates me, wishing that he had a new mother. He started throwing small blocks at me. This is what happens when he is no longer in control.

As instructed by our doctor, I calmly informed him we could talk about it when he calms down and that I was going to shut the door until that time. This made things worse. He craves the audience of his tantrum. For a few moments we fought over the door being open or closed. Round and round it went. Finally I was able to keep the door shut. He starts crying. My heart rips open. He is still ranting, but he’s also crying. He’s angry and upset and he can’t even express why. I hate seeing him like this. He is such a sweet and loving boy most of the day, but these outbursts are almost daily. How do you not hurt when you hear them express hate for you? Even when you know they don’t really mean it, how do you not feel it? Well I felt it, tears came and ran down my face. E storms out of his room to rant in my face and sees me like this: sad and almost broken. He deflates. He goes back to room sobbing that he upset me, apologizing all over himself.

Dad is now done getting C to bed and steps in. He reads to E, puts him to bed and peace descends on house for a time. Time that is precious and rare. Sad and exhausted, I head to bed. Lights out, and hoping sleep comes.

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