Behaviors, Business, Physical Care and Emotions

I’ve been doing the special needs parenting thing for seven years now. I’ve learned so much about myself, my son, autism, friends, family and life in general. Having a child with a disability changes everything. I’ve learned about  exhausting, relentless behaviors. I’ve learned how demanding physical care can be. I’ve completed evaluations, made phone calls, and sent emails. I’ve felt the unique, confusing heartbreak that goes into raising a child with a disability.

Some parts are great. I see beauty now that I never knew existed.

Some parts are heartbreaking. I see struggles and ugliness now that I also never knew existed.

Autism has brought me joy, laughs, undying love, fear, worry, anger, confusion, anxiety. I could go on and on.

I think some people don’t know the differences that go into raising a child with a disability. And why would they. If you don’t live it you would have no idea. Or, I often hear well-meaning people say that it’s not all that different from raising a typical child. I mean, even I can admit that parenting in general is hard. All kids throw tantrums. All kids can be difficult. It’s exhausting and rewarding at the same time.

I often think about what sets parenting a special needs child apart from parenting a typical child. What are the major differences?

I think of it as four competing parts, continuously ebbing and flowing. Behaviors, the business side, physical care and the dreaded emotional side. Obviously at different periods of life the strength of each part will vary. Sometimes you’ll have all four. Some days maybe not.

Some days you feel like you are in control of the business side but the behaviors are getting to you. In my case this will be the periods where I am fighting with the county over a stroller or when Cooper forces us to sit in the dark for hours. Some day’s you’ll be so exhausted by the physical needs you’ll swear you can’t do it for one more day. I often feel this one. Cooper has chronic ear infections and constipation. He needs supplements and medication. He still needs to be fed, dressed, etc. It’s a lot and there is no break in sight.

One of these parts alone is hard. Try having all four. For years. With no break. My point is, I thought all the parts held equal weight. I was wrong. I’m learning that as Cooper gets older. The emotions are the hardest one. The other ones are manageable.

No matter what successes or victories you have raising a child with special needs…you’ll always feel the emotional side. There is no break from it. This is the side that will kill ya. And it never goes away.

Let’s look at the four parts that go into raising a child with special needs.

There are the Behaviors

This is the exhausting part that wears a person down to nothing in an instant. This is the rigidity. The anxiety. You know that walking on eggshells feeling that autism can give you? That’s the behaviors. The day-to-day stuff that makes each day hard. For us its hoarding, lining up of objects, tearing apart beds and our son’s aversion to lights. This is the head hitting, the kicking, the screaming in the car. And don’t even get me started on the sleep deprivation. These are the behaviors that make you feel like you are going to lose your mind and you’ll question how you can go one more day living with them. And then just as you are pushed to the brink, your child changes. They stop hoarding. They take a break from tearing apart beds. They decide to keep their clothes on. That’s the one constant about autism. It’s always changing.

The Business Side

This is the never-ending paperwork. All the phone calls, evaluations and meetings. If I had to put a number on it, I would estimate that the business side of autism is 5-10 hours a week. Even after six years I am still shocked at times by how much time and energy goes into managing my son’s care. He has an autism program, ABA therapists, speech therapists, occupational therapists, feeding therapy, ear doctors, GI doctors, a pediatrician, a naturopath, a social worker, a waiver, Medicaid, health insurance, etc. At any given time I have multiple battles going on. Somehow, even in 2017, I find myself always advocating for his basic rights. I know I could give up. I could even tone back. I don’t have to take on every fight, right? I’ll tell you a secret though. Cooper’s future and well-being are directly correlated to how much I care. And how much I fight.

The Physical Care

It could be medical. It could be providing all of their self-care. When we have babies, they are completely dependent on us as parents. That is to be expected! And while caring for a little baby is a lot of work we know that there is an end in sight. At some point our kiddos are going to learn to put their shoes on, get dressed, feed themselves and safely walk. We know that they are going to grow up. Someday, even though it makes you sad to think about it, our babies aren’t going to need us anymore. We even know that the phases will change. Meaning infants put everything in their months and then grow out of out. Toddlers get into everything. With autism it’s my different. My son isn’t growing up. At almost age seven and 70 pounds, I still feed him, bath him, dress him and even carry him. My house is still baby proofed. My doors are all triple locked. This is the part that can be hard on a parent’s body. It’s physically exhausting.

The Emotions

And then there are the emotions that go into parenting a special needs child. This is the one that will kill you and the one that really, truly never goes away. There will be breaks in behaviors. Breaks in paperwork. Breaks where it feels like you aren’t fighting. Breaks where your child will learn to drink from a cup or put their shoes on. Moments where it all just works.

You’ll think you are doing fine. You’ll feel like you’ve mastered this special needs parenting thing. You’ll let your guard down. And wham. Your seven year old niece will sing you a song. Or write their name. Or you’ll go to your four year old’s Christmas Play at school and realize your autistic child has never done anything even remotely like that. And you’ll realize your child isn’t fine. He has a disability. That is the emotional side my friends. And in my experience there is no break from it.

I’ve learned that the happiest times are also the saddest. While I’m celebrating my four year old’s victories I’m sad that my six year may never ‘get’ there. Or while we are enjoying a family vacation, dinner at a restaurant or a play, I’ll miss my Cooper.

For years I thought it was the sleep deprivation that was going to kill me. Then I thought it was changing diapers for a 70 pound child that had no cognitive awareness of using the toilet. I remember my husband and I saying, ‘we can’t keep doing this.’

But I was wrong. You’ll learn to live with that stuff. You’ll get smarter. Or your child will have a breakthrough. Or master a skill. You’ll adapt. And so will they.

But, the emotions never go away. You may get numb to them. You may suppress them way down deep. But they are always there.

And suddenly you’re wishing that the physical care and phone calls were your biggest problem. Because those, those you can fix.

Photo Credit: Melanie Houle Gunderson

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.