Expectations Versus Reality: Inner Reflections of a Special Needs Mom

We have a weekly meeting with a Parenting Expert, whom we shall call J. This meeting usually nets her more knowledge than it does me.

Today, however, she asked me a question and even I was surprised at the answer that popped out.

We were talking about Kyle and his antisocial tendencies. Kyle is the friendliest child with severe social deficits that are usually overlooked by the vast majority of people. J asked me how he does with friends. Kyle...has people he knows who are his own age, but his friends are mostly people my age or older. He doesn't invite friends over. He doesn't ask to go over to friends' houses, and he usually won't make any effort to play with others at the park or anything. J asked me how I feel about that. I was...surprised by my response, although it is a true one. It's simply not one I've given much conscious thought to.

I read a post, a while back, in a Facebook support group for parents of children like Kyle. In its essence, the post talked about how we have to learn to accept, as special needs parents, that our children may not be their happiest doing the things we recall doing. What makes them happy may not at all resemble what we had planned for their lives when they were born.

When Kyle was born, I thought his childhood would resemble mine. I had a best friend who practically lived at our house and vice versa. We're still friends to this day. I was prepared for a gaggle of adolescent boys to come running through my house as he got older. I was prepared for overnight guests and for him to be an overnight guest. I was prepared for pizza parties, Cub Scouts, and gaggles of little boys shrieking through my house.

When Kyle was diagnosed as being on the autism spectrum, I had to accept that a lot of things that I had assumed as a given when I was pregnant with him would not happen the way I thought. As the years have stretched on, I have run into things that I had thought he would do that he cannot or does not do, and I have had to accept, once again, that my vision of his life was not to be.

My house shrieks with the laughter and arguments of little boys, but they are all my little boys. Kyle is in Cub Scouts, because I put him in it, but he is happiest with independent projects.

Kyle has never brought a friend home. The only overnights he's had have been to family members houses or the babysitter's. His closest friends at school are his teachers and the administration staff, who all know him by name and greet him with smiles and high fives.

Part of me, the part that treasures the memories I made with my friends at slumber parties and afternoons spent in each other's homes, mourns for what I can see my son doesn't have. I ache for him to have those memories. I see my friends post photos and stories of their children and their children's friends. I see photos that proudly proclaim "Daughter's First Slumber Party!" and the like, and my heart aches for the experience he doesn't have, and yes, this part of motherhood I have not yet experienced, though I know I likely will with one of my other boys.

The other part of me, the part that knows my son so well, knows that he does not need to have those experiences to have a whole and happy childhood. My expectations do not meet with what my son needs. Kyle needs quiet. He loves building with his Legos on his own. He loves solitary science experiments, and nature walks, and explorations that maybe require Mom's company.

What I wanted and what I thought he would have are nearly the total opposite of what he wants.

In the end, it doesn't matter what I want for his life, or what I expected when I had him. What matters is that he is happy.

And he is.

To The Lady Who Called My Crying Toddler Names

Dear Fellow Patient in the Optometrist's Office,

Today, you had an appointment with the eye doctor. I'm sure you weren't looking forward to this - few people enjoy having their eyes dilated and such. I'm sure you weren't expecting the long wait, and you may not have realized this particular Optometrist serves both adults and children, so you might not have expected young children.

I also had to go to the optometrist's office today, though it was for my five year old son. He did great, in case you're wondering. You know who ELSE had to come with us?

This bundle of adorableness! Do you remember us now? No? Let me refresh your memory.

We got to the office at about 10:45. Great! My other child's appointment was at 11:00 - I was early for once! Woo hoo!

You were already there when we got there. I don't know if you were a walk in or if you had a scheduled time and were also made to wait. What I do know is that you were there when we got there.

The King (my sweet baby in the above picture, taken shortly after we arrived at the office today) had been up since 5:30 this morning. He was exhausted, but was being pretty good for the first 20 minutes or so that we were there. The longer we had to wait, though, the more my poor 21 month old boy fell apart.

And he screamed. Because he's a toddler, and just learning to speak understandably, and this is what barely verbal not-quite-two-year olds do: they scream, they cry, and they throw fits.

I tried everything I could in a crowded waiting room to calm him down. I sat with him. I rocked him. I held him. I walked with him. I bounced him. I did everything short of leaving an appointment I couldn't reschedule to get my poor boy to calm down.

And finally, FINALLY, it worked. He'd been sobbing and screaming in spurts for almost an hour and I TOTALLY understand people being irritated by the screaming, fit-throwing 21 month old boy in the crowded waiting room. I even understand people making remarks about it, and I could even understand rude comments coming my way if I hadn't actively been trying to comfort him.

What I, and most of the other patients and staff in the room who heard you, fail to understand is why you, a much older stranger, felt the need to come up to me, once my son had calmed down, look directly at his sweet, exhausted face and say "I see you finally got the bratty little worm to shut up."

Bratty. Little. Worm.

Ma'am, with all due respect and what little compassion I can muster through my own exhausted haze, what in the actual fuck is wrong with you?

I wasn't ignoring my son's cries. I wasn't foisting him off on the staff. I wasn't neglecting my screaming toddler in favor of my smart phone (though admittedly, it did cross my mind at one point). I was literally doing everything I could do at the time to calm him AND HAD SUCCEEDED before you made your comment.

I can understand coming up to me and congratulating an exhausted and stressed out mom on getting her child to calm down. I can understand commenting on how long it took.

I do NOT understand why you would feel the need to call a total stranger's child a bratty little worm.

I don't know if you are so far removed from having young children yourself that you no longer remember how hard it can be. I don't know if you never had children. I don't know if you were just in a bad mood due to the long wait in a crowded waiting room with a screaming child. You could be an angel every other day of the week. You might be one miracle attributed to you away from the Pope declaring you a living saint. I don't know. What I do know is that I will always remember you as the rude older lady who referred to my obviously exhausted toddler as a bratty little worm.

If you're interested, this was what he did almost the moment he got into the car, two hours after our original appointment time:

And you think my adorable boy is a bratty little worm...

Bless your heart.

The Good, The Bad, The "I REALLY Shouldn't Laugh at That:" Adventures in Relapses

This site is dedicated to the good, the bad, and the "I really shouldn't laugh at that."

Today we're going to discuss all three, because why not?

So, in December 2015, Kyle had a bilateral derotational osteotomy. This is fancy talk for "the surgeon broke both his legs, turned the bones around, pinned them together, slapped some casts on him, and went on his merry way."

It turns out there's a very small chance that kids with cerebral palsy (Kyle has ataxic CP) will relapse following this surgery.

I took this picture just a couple nights ago. I had noticed, when Kyle was digging for a toy, that his right leg looked a little...funny. But not the good kind of funny. The bad kind of funny that makes you go "Oh dear God, here we go again. Second verse, same as the first." So I had him stand up straight, feet together, legs together, and took a photo.

I sent that photo to my mom, who showed it to my grandparents, and all 3 confirmed they saw the same thing I did: Kyle's leg did indeed, look bowed. Again.

The next morning, I emailed the picture to his orthopedist and called to see if I could get him in. We're working on getting him in ASAP, but right now he's not able to be seen until August.

The doctor agrees, it appears Kyle has relapsed.

Now, a relapse isn't necessarily the end of the world. It feels like it is, but it isn't. We have a visual confirmation that he's likely relapsed, but we need x-rays to see how bad it is and what we need to do about it. In the extreme, Kyle will need ANOTHER surgery.

Because Kyle has, like his mother, terrible anxiety, we discuss the worst case scenarios together so we're prepared. So I sat Kyle down and explained to him what was going on and what might happen.

He cried. He was angry. Because of course he was. Wouldn't you be? I am, and it's not even my leg.

ANYWAYS. Finally, Kyle, being the amazing kid he is, told me that no matter how much he DOES NOT WANT another surgery, if the doctor says he has to do it, he will.

But he has conditions.

One of these conditions is that I am not allowed, now or ever, to recommend that he dress up as Frankenstein for Halloween.

I mean really, how unfair.

The Reality of Childhood Bipolar Disorder

Several months ago, I wrote this post about the reality of ADHD/ODD in kids like Kyle.

Today, for my edification and yours, I want to talk to about the reality of childhood bipolar disorder...in children like my four year old son, Taryn.

Yes, I said four year old.

The reality is, bipolar and other mood disorders do exist in young children. As with ADHD and ODD, it's the severity and occurrence of the behavioral issues that win these kids their diagnosis and set them apart from more typical children of similar ages. And, just like ADHD and ODD, the diagnosis is difficult to get.

No one wants to label the adorable curly-haired tot in front of them as mentally/emotionally disturbed or unbalanced. No one wants to look at his exhausted, teary-eyed mother and tell her "I am so sorry - this will never end. Your toddler displays all the signs and symptoms of a life-long mental illness called bipolar disorder. He will not outgrow it."

But, to any pediatricians and pediatric psychologists out there, please, don't take his adorable face and my tears to mean I can't handle what you feel is wrong with him. Please, don't fear placing a label on him. You're not labeling him. You're opening a door for me to help him. I came to you for answers, because nothing I did was helping him. I'm his mother; I'm supposed to be able to help him. That's my job. Your job is to tell me what's going on with him. I can't do my job if you're reluctant to do yours.


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Now that we have that out of the way, let's get back to talking the reality of this disorder. Let's talk about the dark parts of it, not because we want to drown in the despair, but because acknowledging the truth of the matter is the only way to begin helping these kids and families. To help my kid, and my family.

As I did in the ADHD/ODD post, I'm going to answer the most common questions we hear about Early Childhood Onset Bipolar Disorder. There will be links, of course, to reputable sources for you to learn more, should you choose to. And I so hope you choose to.

What is Early Childhood Onset Bipolar Disorder?

In a nutshell, ECOBD (acronyms are your friend!) is bipolar disorder that presents in very young children. From what I understand, these children are usually early elementary aged or younger when they begin exhibiting signs and are hopefully diagnosed. In the DSM 5, this disorder is now called disruptive mood dysregulation disorder, but it is one and the same. Many pediatric psychologists may even call it bipolar disorder to help parents put a more familiar name to it, as Taryn's did.

What Are the Symptoms of Early Childhood Onset Bipolar Disorder?

Not every child will have all the same symptoms, but there are a few main ones to look out for, and they do differ from what you'd expect to see in adult bipolar sufferers. Signs that your child may have this disorder include

1. Extreme temper tantrums that often result in violence or aggression towards others/things
2. These outbursts occur three or more times per week and are not consistent with outbursts expected in children of that age
3. Extreme sadness or lack of interest in play
4. Defiance of authority
5. Hyperactivity, agitation, irritability
6. Inappropriate sleep habits
7. Wetting the bed, night terrors
8. Strong, frequent cravings, most likely for carbs and sugar
9. Separation anxiety
10. Impaired judgment, impulsivity, racing thoughts, and pressure to keep talking
11. Dare-devil behavior
12. Inappropriate sexual behavior. Maybe your little guy likes to pull out his private parts and play with them, even though he knows better. Maybe he's a little TOO interested in what makes boys and girls different.

These are just a few of the symptoms, and are actually the symptoms my own child exhibited and continues to exhibit now, post-diagnosis.

Those symptoms sound an awful lot like other childhood disorders, such as ADHD and ODD. How do you know it's not that?

Good question. Many children with bipolar disorder are often misdiagnosed as having ADHD, ODD, or other behavioral disorders. Taryn was originally suspected to have ADHD. He still might - the disorders are often co-morbid. So how do you tell the difference?

The easiest answer to that lies in the mania experienced by bipolar sufferers. The hyperactivity and impulsivity in ADHD sufferers is present at all times. For someone with just bipolar disorder, it's only present during manic episodes. A person with both suffers from increased hyperactivity and impulsiveness during these manic episodes. It can be very hard to tell the difference, so be sure to document and bring it up to your healthcare provider.

What Can I Do If My Child Has Bipolar Disorder?

From one bipolar child's mother to another, the most important thing you can do for them is love them. Love them so much, it hurts. Love them through the hard times, and the good times. Hold them when they're falling apart. Don't hate them for their rages; they don't mean it, and they're probably just as scared as you are, if not more so. 

As far as medically helping them, there aren't a whole lot of options for the younger bipolar sufferers. Part of that is because pediatric bipolar disorders are a relatively new area of interest. Many insurances don't even accept the diagnosis, or if they do, make it difficult to get treatment. You may have to fight for your child, to get him or her the help they need. I am very fortunate in that my children's doctor does not believe in minimizing what the parents see or feel in their children and was willing to refer him out to a neurologist and a psychologist to get us some answers, and that she was willing to fight the insurance company with me to get him the help he needed once he was formally diagnosed.

Speaking of which, treatment for pediatric bipolar disorders is very similar to what an adult would be given. Play therapy is an excellent tool for any child suffering a psychiatric problem. Good communication with schools and possibly developing a 504 for behavior will help your child in the classroom. And yes, medication will at some point become necessary. 

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Living with a child who has a mental illness, which is what bipolar disorder is, can be difficult. It's overwhelming, exhausting, and frustrating. I can't imagine how my son feels on a daily basis. I can't imagine what it's like to be him. I can't imagine it, because I'm not bipolar. What I can do, is love him. Love him even when I'm so tired from trying to help him that I feel numb. Love him so hard, that he'll never feel unworthy. 

What I can do, is teach you about him and other children with bipolar disorder. Because he is not alone, and neither are they. No matter how alone they feel in the midst of their rage, their mania, their depression - they are not alone. 

To my precious boy, who will likely one day stumble across this blog and read this post, if you remember this day - the sound of your mother sobbing at the kitchen table while you rage in your room, the feel of your mother's arms holding you tight as you both cry together when you've worn yourself out, the smell of the hot chocolate she made you when you were finally finished crying - if you remember this day, or any of the others so much like it, while you read this post, know that I will always love you. I will always fight for you. And I will always be so proud of you for fighting your own mind, for continuing to be you, and for just continuing. I love you.