How to Help a Parent With a Special Needs Child

Dear The Band,

I have some news for you. I'm getting married. At least I'm engaged and we have a date set.

It's crazy. They - whomever "they" are - say that you shouldn't make any big decisions within a year after a major trauma. So I, to be different, am getting married and moving my future husband and his two special needs boys into my house.

Have I mentioned I'm overwhelmed?

And that I'm possibly an idiot?

And that I truly do love this man with all of my heart and soul?

I "accidentally" quit taking my anti-depressants for a couple of weeks. I couldn't cope without them.

I'm not trying to be a whiner - really I'm not - but when the hell do I get to be happy?

P.S. Dress shopping fucking sucks and the whole "wedding" industry is in a big bed wanting my money.

Here at The Band, we believe in kicking stigmas to the curb, flinging glitter, and shining a light into the dark.

And now?

Your bandmate needs a sounding board.

It's time to Ask The Band!

When I pictured myself becoming a mom, I pictured the idyllic version: singing lullabies, flying kites in the park, riding bikes together, trips to museums.

I did not picture having a 10-year-old boy who swears a blue streak like a trucker.

Help me out, The Band: how do I stop the FREAKIN' swearing?  

My partner and I don't swear (much) at home. My son doesn't watch many movies or TV shows with swearing. Sure, there are times when he hears things that he probably shouldn't, but we aren't bubble-wrap parents that protect him from everything. 

He was diagnosed with ADHD a few years ago and we have found a fairly comfortable place where our lives are back to our acceptable normal. Except for the swearing. I've read articles that say that swearing comes from a different part of the brain than regular speech and can give someone with ADHD the same type of stimulation that their medication can. 

Yet, there are times when he doesn't swear. He doesn't swear at school, at summer camp or that whole week at home when my mother visited. I know that he can control it, unlike kids who have Tourette's. He just doesn't control it at home.

We've tried everything that we can think of. Reprimanding, ignoring, begging, cajoling, bribing, threatening, and, in one of my less-stellar parenting moments, swearing back. A mama only has so much patience by the end of the day.

I know this is one of my buttons that this kid knows how to push - it may very well push me over the parenting edge. It's the one thing he does that can get my hackles up and turn me into a raging, screaming Mama. I don't want to be that parent any more. I want my son to find better ways to express his anger or frustration. I want him to be respectful of others.  

I just want him to stop swearing.

The Band, do you have any advice for me?

I work in the mental health field because I want to help people help themselves. 

Specifically, I work with children. I've been bitten by an angry 5-year old, cursed at by an angry 17-year old, and had adventures with children all ages in between. Some avoid me in public, others come up and hug me. It's the life I've been used to since I started working in the field close to 10 years ago. 

I'm an expert with the speeches I have to give a lot. The one for the parents that starts with, "This has nothing to do with you. Nothing you did caused this."

I've always kinda assumed it was at least somewhat comforting.

Fuck that. It's not.

My adorable, amazing 2-year old is non-verbal - completely non-verbal. Even typing that makes my chest hurt. I was convinced he was a later talker. His older brother, who's almost 5, was a late talker and now won't be quiet to save his life. But this is different. 

He doesn't talk. He makes some noises. As he got closer and closer to 2 I got worried. At his 2-year check-up, his doctor told me that we could do a speech evaluation, but he figured the most "therapy" we'd need was to teach us how to MAKE him talk.

Moms know. I fully believe that. And I fully believed that I couldn't just make Blair talk. It wasn't because he didn't have to, or even because he didn't want to. Things were different. We'd discussed how good he was at being "the baby" of the house, my husband was convinced that was it. I went with it, but it's not. There is something different about Blair. In everything he does, or doesn't do, there is something different. He's full of giggles and smiles and adorable...but something is wrong.

His evaluation finally came and it was heartbreaking. When trying to see how he was compared to how he was suppose to be, he struggled. At the end, I looked at the 2 ladies after they told me he definitely needed speech therapy and asked, "I know how this works...you can't tell me until the testing is scored and reviewed with whoever...but let me ask it this way. Is the not talking the problem or is the not talking a symptom?"

They stared back, knowing what I was asking. Of course, they couldn't tell me anything, but they did explain they want him to receive an Occupational Therapy (OT) evaluation because they saw signs of sensory issues, and they would "likely recommend a psychiatric evaluation as well."

My son may have autism or a similar disorder.

I cry thinking about it.

Not because I will love him less or because of anything like that...but the world is so cruel to completely "normal" people. People are so cruel and judgmental. I'm afraid of how they will see him and, honestly, how they will see me.

I've heard co-workers ask about a pregnant mom with an autistic child, "Why on earth would they have another baby?!"

I've heard friends say, "I think that kid just needs showed who's boss," when witnessing a meltdown.

Fun fact: I did everything I was suppose to. If my son does have some sort of condition and acts out however he may act out, it's not lack of parenting or limits. I'm a damn good mom. My husband is a damn good dad.

So why do I feel like a complete failure?

I'm waiting for a packet in the mail. A packet that will tell me everything they think about my son. They leave it up to the local postman to drop off the results at your house and run away before you can open it.

There will be terminology and coding that many people wouldn't understand. The good news is that I'll understand it. The bad news? That I'll understand it. I won't have the pleasure of sitting on the other side of a desk, telling someone that it'll be okay and that this isn't anyone's fault. I will continue to wonder what happened, how it happened, and why I never noticed something was wrong until it was so obvious that I HAD to acknowledge it. 

Postman, you better hope I don't see you come. If I see you, you're going to have to be the poor sap that gets to be with me when I open up that packet. 

Approximately 1 in every 88 children has an autism spectrum disorder.

This is one parent's story:

"God never gives you more than you can handle."

"You must be a very special mommy to get such a "special" child."

"Are you SURE he is autistic? He just seems quiet."

"Well, at least autism isn't fatal."

Stupid things people have said to me.

Growing up, I always read Women's World magazines, and they always had sections about moms with special needs kids. I always marveled at these mothers: how strong they were, how they never complained, and how they loved their kids just as they are. Still, I could never fathom BEING one of those special needs moms. 

When Andrew was born, he was a whopping 12 pounds and four ounces - a giant bouncing bundle of joy. Though he had a seizure at three days old, he was a healthy, happy baby. Never any trouble. Perfect from his fat little toes to his bouncing blonde curly hair.

At 18 months, I noticed he wasn't talking as much as I thought he should be. Since he'd had a seizure, I was routed to the children with special needs department where they sent out two chipper 25-year olds to evaluate Andrew. They played with him, whispered, and wrote notes. They told me that, yes, he was behind and he would now be visited by a special educator and a speech therapist.

Fast-forward a few months.

I spoke to the therapists about Andrew and mentioned, "You know he does funny repetition stuff - I know I'm probably overreacting but I've heard that children with autism do that."

I received blank stares.

They said, very kindly, that they thought I should have him evaluated by a pediatric developmental specialist.

The floor I had been standing on suddenly became wobbly; I realized it was my legs. 

Two weeks later, we were advised, "Yes, your son is autistic. And now you will be visited by the special educator five days a week, the speech therapist three days a week, oh, and an occupational therapist three times a week." 

I want to say I immediately charged into action. I want to say I said "I love my boy and we will fight!"

But what I actually did was fall into a lump on the floor; immediately grieving my son. I wanted to wake up from this horrible dream I was having. It was as if I had walked into the door with one child and, when we left, they handed me a new child. All my dreams for him vanished.

I was broken.

I came out of my haze a few days later and read, and read, and read. Whatever I could get my hands on. The internet, the books, pamphlets, magazines!

I wanted the cure and I wanted it now. We did the therapies, and they helped, but there is no cure. 

It's been 6 years since the diagnosis. I treat my 8-year-old son the way I treat his little brother: no special treatment or different rules.

We lucked out living in a school district that has done well by him. He is reading and can do math at grade level. Social studies and science are more abstract, so he is working hard on that.

Socially, he's like a 3 year old. He can't go into a regular classroom without an aide because he jumps up, wanders off, or gets distracted. Even his 4 year-old brother interacts more appropriately in social situations than he does. Danger is not on his radar: he'll run out into the road, not thinking about traffic. In fact, we had to put up a locking fence around our yard just so he could play outside.

Autism may not be fatal, but the number of near misses I have had with Andrew shows he is oblivious to danger, making him much more prone to becoming one of the many people with autism who die due to accidents. 

I've lost contact with most of the mom friends I had before he was diagnosed. Their sons have playmates, baseball games, and sleepovers. Their kids don't want to play with Andrew because he's "weird," "doesn't understand the rules," or he "talks funny."

We've tried so many things; they don't work for Andrew. He has a couple of friends at school in his autism classroom, but he isn't invited to the "typical kids" parties.

As he enters third grade, the kids are figuring out that he is "different." He either doesn't know or doesn't care. 

On the outside, I am just like the moms in Women's World - I am fighting for my boy, and I advocate for his inclusion into all things "typical." On the inside, I am still that mess on the floor of my doctors office, sobbing and screaming.

It's not fair.

People say things all of the time about how awesome a mom I am and how well he is doing, but I feel like I have failed him. I failed to save him from a life of struggle, of dependence on me and my husband. I have failed his brother because I now know it will fall to my little boy to watch out for Andrew when I am gone. 

Would I trade Andrew? No. Would I take away his autism to give him a better life? Absolutely, without question.

Call me an ableist, say I don't love my child. I DARE YOU.

NO PARENT wants their child to struggle. NO PARENT wants to worry about people hurting their child because they don't have the capacity to realize that people are being mean to them or that people are dangerous. NO PARENT wants their child to have to go to therapy instead of playing. NO PARENT wants to ache knowing their child's future is not as wide open as the rest of the world's.

I love my son, but I HATE what autism has stolen from him; and from our family.  

So many of us have struggled with the challenges of being a parent.

This is the story of her struggles.

I've kept my fears and feelings bottled up for so long that I'm almost afraid to let them out. I'm afraid to to let them go. 

Here goes nothing.

Even as a teen, I was afraid of being a mom. I felt my issues meant I shouldn't have children - I didn't want to be responsible for screwing up another's life like I had my own. Sometimes I wish I had listened to those feelings.

My daughter, she's a spitting image of me and I have no idea how to help her. She's in the fifth grade and extremely intelligent, which she sees as a curse.

She has ADHD. We struggled for many years before getting a diagnosis. She's struggling socially, trying to fit in, trying not to be different. She feels everyone hates her - I think she truly believes that they do.

Her teacher says that the kids at school accept her for who she is, yet she doesn't feel that they do.

How can I help my daughter if I can't help myself? How do I ease the pain of rejection when I feel the same rejection? I want to tell her it's okay to be different; that the world will accept you. I wish I believed that.

I'd like to say I was blessed to have another child, but I don't always feel that he's a blessing. I feel guilty for feeling that way.

My son is eight; so very different than my daughter. He's always been a difficult child - I've felt like an inadequate mother from Day One with him. I didn't allow myself to bond with him.

Don't get me wrong - I love him; I'd lay down my life for my kids. But spending a day with my him makes me want to scream with frustration.

At three, he was diagnosed with autism. We've just learned that autism was a misdiagnosis - it's more accurate to say he has ADHD, with Oppositional Defiance Disorder, and a learning disability.

He's slow to read. He has trouble making friends. It's no wonder - he's downright mean, hateful, and shows no remorse when he hurts someone.

He craves attention. He repeats things a hundred times. He stims (twirls) when his medication is wearing off.

If you tell him of an event coming up, he'll ask over and over about the event. Every part of his life has to be planned and scheduled, or life is a living hell.

I feel like everything that's happened to him is my fault.

It's my fault that I couldn't carry him to term, that he was delivered at 34 weeks. It's my fault, because I allowed steroid injections to make his lungs mature due to his premature birth.

He's like this because of ME.

I've failed him and he's the one stuck living like this. Constantly feeling like the outcast. And I'm stuck feeling as though I'm a failure as a parent. As a human being.

Why couldn't I have children that didn't have issues?

I feel like God is punishing them, because I'm their mother.