Wednesday, April 17, 2013

A Mom's Journey Of Love: Special Needs

I had just voiced my concerns to the pediatrician and explained how my son was nearly two years old yet not verbal. Having told the doctor how he would merely grunt and point at the refrigerator when he wanted milk to drink I pressed my growing concern that something was not right.

But instead of a referral to someplace for testing the doctor had merely responded with:

"This is just first time mother's anxiety. Each child reaches milestones at their own pace. I see nothing to be concerned about."

I fired him that day. 

I knew something wasn't right.

Mother's have a gut instinct.

And for good reason.

Mother's... you can rest assured that if you believe even for a second that something is "not right" with your child's development.... listen to that inner voice. Pay close attention. Because it's much too important to let slide.

My son wasn't talking. He had crawled late and it wasn't the typical crawl that most children have. This crawl was like an army crawl,... he'd move his little body forward using his forearms but dragging his lower half along the floor behind him as an after thought. He was chronically upset and I spent hours pacing the floor holding him as he screamed and cried. Nothing seemed to soothe him. Desperate for a break, I'd eventually leave him safely tucked in his crib where he'd continue to scream on end until his little face was as red as a beet. He couldn't seem to self-soothe. The pacifier was a joke and ended up as a projectile across the room. Sunlight and water in his eyes sent him into a full blown production of body contorting along with squinted eyes and crying. Sock seams irritated him to no end, were tossed to the side and when I held him he was like limp spaghetti as if he lacked the upper body muscles to hang onto me. Lovies and rattles were not a comfort and he'd squirm away from them as if they frightened him. I'd sit him up in my lap and coo at him, trying desperately to catch his eye and make some sort of connection with him. But instead to my dismay he'd look right through me as if I wasn't there and the blankness there left me feeling as if I might as well be invisible.

Then the head banging began. Head banging on the tile floor like he was at a rock concert but much less fun. Screaming and crying like he was trying to escape himself. I'd rescue him from the floor and move him to the soft carpeting where he'd continue to attempt to bang his forehead as I'd try to hold him, comfort him and he'd flail about in return. By this time I'd be about in tears and not know what to do. I'd sit on the floor with tears threatening to engulf my eyes and scream out from within "What is going on?!?!?!?"

He'd play with his Thomas the Train set that he was obsessed with but not the typical way most children would. He'd line up the little trains with smiling faces and if one was moved out of place he'd lose it. He'd begin screaming and throwing the trains. He'd line up anything he could get his hands on...  cars, books, blocks, figures, farm animals, anything. The "meltdown's" worsened until he began hitting and biting. I was at my wit's end with what was wrong. I knew that he needed help.... that WE needed help. I didn't care at that point WHAT the issue was.... I just wanted to find out what it was so we could get him the help he needed.

That was way easier said than done. 

First.... came denial. 

There were family members who preferred to stay in denial that there was any need for help.

In hindsight.... I can tell anyone going through this:

Take control. 

I did take control. But I should have sooner. I should have just done what needed to be done and NOT listened to the external voices of denial from other's that desperately wanted to believe everything was peachy, rainbows had pots of gold and ponies didn't poop.

If I had it to do over, I'd have sought help sooner. 

We took him in for testing.

After it was completed the results were given to us: 


Later we were told technically Aspergers. High functioning. 

Applied Behavioral Therapy began to help with behavior, speech therapy began and both began showing steady improvements. I was ecstatic to see his progress in baby steps and became his advocate. I began reading as many books as I could get my hands on to educate myself about autism, sensory disorders, speech delays and learning disorders. I would stay up late at night absorbing as much information as I could so I'd be better informed.

I am incredibly proud of my son. When I look at him, I see happiness, I see a love of animals, the great outdoors and creativity. I don't just see Aspergers because he is so much more yet in that I see many challenges overcome, many years of hard work put in, speech now completely on target, many sensory issues overcome (swimming accomplished!) emotions better coped with, and an enthusiasm to help others. When I see him I see love. I see a little boy I was beyond blessed to be given because I know because of him I am a better person. God has blessed me with the opportunity to be strong and advocate for him and be the voice he needed when he didn't have one. I look at him and I see his sweetness. His smile. His laugh and love of being silly. I see his hurt when other's don't give him a chance because sometimes he may come across as bossy due to his need for control. I see the enormous pressure he puts on himself because he wants to do his best. I see his need to be loved and understood and validated.

For years he never said "I love you." As a mom my heart ached that he never said those words and that socially he didn't understand why we say them to the people we care about. I finally decided one day when incorporating his social stories (when you role play to teach a special needs child what to do or say in specific situations) that it was a huge disservice to not teach him something so important. I explained to him when we deeply care for someone we say: "I love you and they usually then say I love you back."

That night at bedtime and ever since when I've said "I love you." he has replied with "I love you back."

He took it to mean literally but that's okay. It's our thing, it's special and it makes me smile.

Here's to the moms who doubt themselves, who beat themselves up, who question, who cry, who drive in traffic with the same questions swirling in their heads of what to do, who wonder if what their doing is right, good enough or even wrong. Here's to the moms who continue to fight for their child even when they are bone tired from exhaustion, endless evaluations and therapies. Here's to the mom's who feel they are fighting this battle alone and think they have no one to turn to, to listen to, or guide them....


Other's have been there before you. 

Other's are there now. 

We know the pain, the doubts, the tears, the questions, the isolation and the loneliness. 

God will guide you. God will pick you up off the floor, hold you, wipe your tears and lift you up. God will lead you to the right places, the right people and the right help. God will get you the answers you need. And along the way, bit by bit God will give you people.... other moms who are going through the same thing and who will offer you support, advice, hope and most of all..... LOVE.

© ~ 2013 

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