Follow up

When he turned two it became my mission to find a diagnosis. I was his mother from the moment we picked him up and I knew that something was not right fairly quickly. When he was removed from his first daycare it just confirmed my suspicions. It was when the second daycare facility couldn’t handle him anymore that I really started to research and make even more of an effort to find answers despite the obstacles in our path. He didn’t even last a full year in that preschool/daycare, they just couldn’t handle his behavioral outbursts. I didn’t know where to turn. If you’ve read my previous chapters you are aware of how bad these behaviors can be.

We have seen countless psychiatrists, psychologists, neurologist, therapists (occupational, cognitive, play, and behavioral), along with some medications that only made things worse. Surprisingly, in the end, the public school system is where I finally found some help and understanding. I was told from the beginning of his journey there that he would never be kicked out of the school. They worked with me and my son from the moment we stepped in the door and I felt hope, and things did start to get better. Until they got worse. Here’s the things about my adorable child… everyone loves him and his charisma. Even the day cares that released him still keep in touch, send him birthday cards and genuinely want to see him succeed. He is so friendly, outgoing and smart. He’s handsome and charming and really funny. It’s not just because he is my son that I say he is special (well, at least I don’t think so), he really is one-of-a-kind.

Amongst the myriad of diagnoses we have been given from all of the professionals sought out are ADHD (that one seems to be agreed upon by all), pediatric bipolar disorder, DMDD (disruptive mood dysregulation disorder), ODD (oppositional defiance disorder), and traumatic brain injury from exposure or trauma in the womb. Of course, each time I heard a new opinion, I searched the internet like a dog chasing its own tail, and convinced myself every instance that this was indeed the disease, disorder or disability he had. Then he would do something amazing, say something brilliant, stroke my hair and tell me how much he loved me, have a week or two of “normal” behavior, and I would squash that conclusion and tell myself that he was completely fine and just like all of the other kids. Then I would hold my breath until the next episode. I do a lot of holding my breath while waiting to see what’s coming next, praying that a magic pill will appear and make it all better.

We’ve tried it all at home too. You name the solicited or unsolicited advice we’ve received, we’ve heeded it. Consequences, routine, punishment, role reversal, more play, diet changes, less routine, bedtime earlier, and several more. NOTHING has worked. I’ve actually been told that I just need to stop spoiling him so much and take control… because that never occurred to me. It’s beyond frustrating to love such an amazing little boy and not be able to help him. It’s what mom’s do, right? We fix it and if we can’t fix it, we find someone who can at least help.

In a short couple of weeks we will be amending his IEP and removing him from that same public school midway through his kindergarten year to an alternative school. The IEP was new to me and I’m still learning the ins and outs, but I am grateful for it. We are moving him to a program that will better help him regulate his emotions. I find myself pondering, yet again, if this the right move to ensure a brighter future for my baby. There are so many pros and so many cons and emotionally, I’m spent. This really shouldn’t be as hard as it seems. So many opinions and friends pointing us in different directions… all with the very best intentions, but overwhelming none-the-less.

So, in true Stephanie form, I pulled out my computer and started to type to try to clear my brain. It’s funny that I would write a poem because I always thought they were a little corny. Even though I feel like I’m writing for Dr. Seuss, somehow it makes me feel better. As I read through it over and over again, I wonder if I’ll delete it or share it. Either way it doesn’t matter, it helps me cope.

My Poem

When I close my eyes and focus on only what I’m feeling, so many emotions come to my mind

Fear, anger, sadness, fatigue, confusion, blame – My intuition can’t see clearly – totally blind

But, by far, the strongest feeling of all is the deeply-planted love I have for him

The fear battles with the excitement I have for his future, the light starts to grow dim

The conundrum and confusion are real and I get angry that there is not a good answer

The outside worlds judgement and my own anxiety grows inside of me like the spread of cancer

I am his mother, why can’t I fix the trauma his brain has no choice but to endure?

Surely there is someone, somewhere who can help me figure out a cure

We’ve seen psychiatrists, psychologists, neurologist, therapists, and many more

They all say different things, but it feels as if they give up, like it’s too much of a chore

I want to blame them for their failure and their lack of caring

It’s like they give up and think he’s beyond repairing

I want to yell at the teachers, “do more, you’re not trying hard enough”

But then they do something spectacular, and it’s like the universe is calling my bluff

When I let him go into the world each day

My gut wrenches to think of the obstacles that stand in his way

Every moment he’s away, I wait with bated breath to see what will unfold

I literally have no idea which way it will go and what the day will hold

Will he come home beaming with pride that his strategies were a success?

Or will he have his head hung low and be full of anxiety and stress?

When he has an especially bad day all I want to do is bundle him in a hug and not let go

That helpless feeling wreaks havoc on my emotions, like a sad song on the radio

I know he is stronger than I will ever be

How do I let him know that this is what I see

Alas, the judgement of others creeps in my already-disorganized brain

Their looks of disdain and disapproval drench me like a torrential rain

I want to scream at the top of my lungs that I have never worked so hard to fix anything

But almost every time, my perception of their stares start to hurt like a bee sting

I fear I have run out of options and there is nothing else I can do

Then I have a good cry, put my superwoman cape on and forge through

He is only a child and has no idea why he can’t behave like the others all of the time

I would do anything to make it better for him, would even consider some small-offense crime

When I think about how smart he is, the negativity subsides some

I know that there will be better days and we will hold onto them until our hands are numb

Even if things never change, and my bright boy always has this unfortunate battle

I vow to continue to provide support and love and I will always climb back up on that saddle

God made us each uniquely, and in my heart I know that to be true

That gives me comfort and helps my thoughts turn to a more positive point of view

We will be okay in the end, despite the lack of answers or assurance

It will only make us stronger and build up our endurance