The Quiet Struggle of Raising a Child with Special Needs

Here’s my story.

Every Child is Special

photo-1470116109808-c71d8bd6f4a7I always knew my child was special. I have videos of him reading Brown Bear at the age of 6 months. OK, he wasn’t really reading but he showed great interest in the book and that made this momma bear really proud. I would record and take pictures of every single milestone no matter how small it was. Yes, I was that mother.

He was always very distant from me. He never liked to cuddle and he wouldn’t initiate a cuddle either. He wouldn’t sleep in my arms and in fact, people would always tell me how lucky I was when he was a baby. How I could just lay him anywhere and he would fall asleep. Since he didn’t like to be held I felt relieved because the time to go back to work had come. I left him in the care of someone else while I was at work and they described him as the perfect baby. He would sleep, eat, play and never cried or asked to be held.

Then I noticed sensory troubles. He wouldn’t look up when he’d be outside and it seemed as if the brightness of the day would blind him. Crowded or noisy places would deafen him. Mealtimes became harder and harder as he would sometimes refuse to eat certain food because of their shape, color, or texture, sometimes inflicting a gag reflex just by looking or smelling it. I just thought I had a picky eater. He seldom made eye contact and wouldn’t respond to his name.

Playdates slowly disappeared because I noticed he didn’t share an interest in other children. He would isolate himself and it was almost as if he couldn’t communicate with them.When he speaks he has a high pitch and each phrase seems like a question. He repeats phrases over and over again and will say something completely irrelevant to whatever was initially said, making friendships difficult.

Terrible Two’s

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He was 2 years old and still could not speak in sentences or even three-word phrases. I could tell he wanted to say something but when he couldn’t verbally express it, he would scream. If it he didn’t scream, he would stomp. If he didn’t stomp, he would bang his head. It was heartbreaking to not be able to understand him and see the frustration hidden behind the meltdowns. I tried every approach, to guess, to distract, or to join him in his fight. I can’t hold him because that only makes it worst so I wait, making sure he doesn’t hurt himself. It is easier to control the environment when at home, but in public it’s a whole different story.

We have slowly reduced our public outings because we notice it can be overwhelming on him. We are that family that I’m sure you all have judged. We are the family where the “bratty child” is screaming and kicking and you think it’s because of a toy, or because he didn’t get his way. You misinterpret arms flying and us trying to prevent him from banging his head to physical violence. You are thinking those parents obviously suck at raising their disobedient child. You stare and sometimes blurt the most unnecessary and disappointing words that make it more difficult. In those moments I wish I had super powers to immediately press the disengage button, make us invisible, create a soundproof shield around us but no, we are there “ruining” your day, because of our “lack of parenting.”

I have slowly learned to stop caring about the people around us. I don’t apologize for something that is out my control. We cannot live inside our home forever for other’s consideration. If we leave a public place, it’s because the surrounding is obviously affecting our child. Sometimes we have no idea what triggers it, so while you think it’s because we didn’t buy him a toy, it can be because he heard, saw something that triggered something inside of him that made him uncomfortable and screaming is the only way to overpower that.

The Waiting Game

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We succumbed to the “wait it out” game, and we are still waiting. I expressed my concerns to our pediatrician and was told to wait and see how it goes, that it’s just a phase, that he’ll grow out of it, let’s do a vision test or a hearing test, here’s a number, call that number that will then give you another number and then after we hear your whole story, we’ll give you yet another number. This is pretty much how it’s been for the last 2 years. It was not until last January that I got the approval for an evaluation to be done at Stanford to determine if he falls under spectrum disorder. Well, our appointment isn’t until November. We have been waiting and waiting. In the meantime, he goes to two speech therapists and now to school where they are aware of his special needs, even though he doesn’t have an actual diagnosis.

I’m aware that nothing will magically happen after we get an official diagnosis. It’s not going to “cure” anything, but at least we’ll have a gateway to many resources to make his life less complicated.

It’s taken a toll on all of us. All the effort, physically and emotionally to care for our special child while also tending to our youngest is draining. I have felt anger, sadness, anxiety, isolation and then feel terribly wrong for having these feelings, so then comes the guilt.

Relationships

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I have very few friends that have actually seen both sides of the coin. They are my support group, but there are times when I just don’t want to talk to anybody in fear that one little thing will make me burst into tears.

My family… my family is full of drama. I have been the mediator for so long and I’m dealing with my own troubles that listening to theirs only adds to the weight I’m carrying. I grew up with a sister who has Cerebral Palsy and I know my mother knows what I’m going through, but I still keep quiet. When I visit them, I become my mother’s break and I’m left with my sister of special needs, a teenager, my child of special needs and my one-year-old. Am I to blame for not wanting to make the painstaking 8-hour drive to stay home and add on to my responsibility?

I try to be up to date on social media, but I just don’t have the time. I’d rather crochet as it has served to be a form of meditation.

My marriage is in danger. Yes, this can affect even the happiest of couples. I don’t love my husband any less than when I married him, but raising a child with special needs has tested many aspects of our relationship. Our son doesn’t like for us to have a conversation that doesn’t include him. He will say “Mommy, don’t talk to daddy” then takes him away and I miss the opportunity of any dialogue that might save me from dwindling. I am home for most of the day with both of my sons, while my husband goes to work. When he gets home I leave for work for a couple of hours, but I don’t necessarily catch a breath. I leave one child with special needs to go and be with another one. I am a tutor and work at a learning center for people with learning differences. I’ve tried to work from home but the moment I open my computer or talk on the phone it’s time I’m not dedicating to him and he will let me know, not always quietly.

Or there’s the feeling when I feel so much love that it hurts to not be able to hug him, or kiss him. It completely destroys me to not feel his love for me in this way.

The guilt of catching a breath

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My son requires around the clock attention. He doesn’t play well by himself, he doesn’t sit in front of a television screen. When we absolutely need to do something and want to avoid a meltdown, we give him the iPad, then automatically feel guilty about it. Every time I do something outside of the Handy Dandy Perfect Parent Handbook, I feel guilty.

So while you might say, “but he looks so normal.” Well, that type of thing was what made me think, am I overanalyzing everything? Is it all in my head? If all kids are like this, why am I the only one complaining how difficult it is? Sometimes he’s fine, so all those other times is it because I have less patience? or the worst of them all, that feeling that I’m a terrible unfit mother and that that title shouldn’t have been given to me, because I surely messed up somewhere.

So there it is, my not-so-quiet struggle anymore.

 

 

 

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