A stab to the heart

by Elaine
(South Africa)

The other day, Tristan, my lovely 4-year old miracle child had his umpteenth meltdown for the day. I turned to my mother and said something I never thought I'd say, "Sometimes, it's just so hard to love him."

Tristan was never supposed to be. I was diagnosed with infertility at age 22, and my husband and I got ready to adopt when I suddenly found myself pregnant after 7 years of trying. He was the most beautiful baby ever. But he didn't sleep. He wouldn't nurse. Getting him to finish even a 1 oz. bottle was a challenge. He didn't gain weight and was diagnosed as failure to thrive by the time he was 3 months old. He hated being swaddled and would only sleep on my chest. Later, he had to be rocked to sleep with a blanket over his head. This could take hours, and if you took the blanket off, he'd start screaming like a banshee.

He didn't vocalize or 'laugh out loud' until he was almost 9 months old. I read developmental charts, and over and over saw that he wasn't quite on track - but then I'd see something where he was way ahead and I'd convince myself nothing is wrong. People kept telling me, he's a typical boy. It's normal for them to be active and difficult and bouncing off the walls.

At six weeks, the jumping started. By then, he already had incredible body control and his favorite activity was to be held under the arms while he kicked his legs. If you lay him down, he'd scream. By four months, that's pretty much all he'd do, around 7 months we didn't dare take him out of the bouncer and by a year he'd jump on everything that gave him a little lift, yet he was petrified of a trampoline.

Eating had always been a challenge. He didn't take to solid foods until he was 15 months old. He still couldn't vocalize properly and if you tried to feed him any kind of solid that didn't run off the spoon he'd start crying or choking. He still woke up 5 or 6 times a night for milk and would take 5 or so bottles during the day (only a few ounces at a time though). Even so, he emptied a bottle of surgical alcohol (he didn't register that it tastes bad I guess), and once chewed his way through an entire packet of adult Tylenol he managed to get his hands on. He climbed on the counters and crawled along the kitchen cabinets until he could reach the medicine cabinet.

By then, I knew something was wrong with my boy. At 18 months he only had about 5 or 6 words and he was literally bouncing off the walls. He wouldn't sit still long enough to read a book or learn numbers or sounds or colors. When he started nursery school at age 2, he had 20 words and wouldn't sit still at the lunch table, got up in the middle of 'lessons' and started wandering around. At that age, his favorite activity was kicking and catching balls, riding on a kick bike and running. Lots and lots of running. He had his first 'bad' report saying he was behind on gross and fine motor skills. I took him to the pediatrician who said it's nothing to worry about, he'll catch up. His speech was severely delayed by then, but again everyone told me to relax, he's only 2, he'll catch up.

Over the last 4 years, we have had almost daily meltdowns and tantrums (starting at 7 months). He went through an aggressive phase

where he'd kick and punch me. He keeps cutting back on 'acceptable' foods. At the moment he eats bread with peanut butter, chicken nuggets, noodles, mashed potatoes, fries and bologna with a lot of ketchup on it. That's all. He refuses to eat anything else, although he does drink a massive amount of milk (from a bottle). On occasion I can get some yogurt in him. He only stopped using his pacifier 6 months ago, and he would not use the toilet for number 2s until a few months ago. He hates shirts and underwear. Screams I'm hurting him when I put socks on, but doesn't mind shoes that much (he prefers slip on type shoes). He'll only wear specific clothes, and even in the dead of winter won't wear a shirt to bed. He can't stand jeans or underwear. His clothes have to be at least a size too big or he complains that he can't move.

He comes home from school in a terrible mood, yet his teachers say he his well-behaved. He tries so hard to be good at school that he's exhausted by the time he comes home. We have meltdown after meltdown on those days. He can't concentrate long enough to finish his tasks, but he'll stay in his chair until he's given permission to get up. He can't hold a pencil/crayon correctly, hasn't chosen a dominant hand, can't color between the lines, can't use scissors, can't/won't build puzzles, can't follow directions properly, can't skip, can't jump on one leg, can't walk on a straight line, can't concentrate for long times - but he CAN catch a ball and kick it. He used to be a little daredevil, but that has changed now - he gets very fearful of heights and it takes him a while to use playground equipment, yet without thinking he'll jump into the deepest end of a swimming pool. His favorite place in the world is the pool or bath, but he can't stand a shower.

He'll go on and on about something until you feel ready to run into a wall to end the torture. He'll specifically ask for something that he can't get/do, and when he does get 'no' for an answer he'll go into full meltdown mode, screaming for hours "I want... I want..." sometimes changing his requests mid-tantrum. Ignoring him doesn't work. This happens at least once a day.

He has difficulty understanding social cues, although he does have a lot of friends he doesn't have 'one best friend.' He switches them around often. I have seen how annoyed his friends can get with him, especially since he doesn't take no for an answer, and he can really get into their personal space and doesn't understand that he's being annoying. It hurts me almost physically when I see this. Over and over again, I have tried to explain to him about personal space and understanding 'no', but it doesn't sink in.

No form of discipline works on him. He still doesn't sleep. He needs constant stimulation. He wakes up his little brother in the middle of the night, just so he doesn't have to be alone. He lashes out frequently, and sometimes doesn't understand that he's hurting people. He plays extremely rough with his little brother. He screams, just because he can.

But then he'll come to me, ask for a hug and a kiss, say "I love you, Mommy." He'll get his little brother food or juice from the fridge and he'll teach him how to play with a toy or give him a gentle hug.

My child is a picture of contradictions.

Today, my son was diagnosed with SPD.

Comments for A stab to the heart

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Jan 24, 2015
by: Anonymous

I have so much to say but can only pray for your situation. we do not dictate our children but can only teach them. you keep to your teachings and pray for guidance. GL.

Aug 19, 2012
you are not alone
by: Anonymous

Many of the characteristics you mentioned remind me so much of my son when he was younger. I couldnt go to the grocery store, to church or to the mall without experiencing a super meltdown from my son. I have had to educate myself in order to understand him. He gets ot and st which i am sure has helped. Many times i would get stares from other people who would iam sure think he was spoiled. He is 12 now and i can say things do get better and he will learn to self regulate

Apr 26, 2012
stab to the heart
by: marjory glasgow scotland

Hi i have just read your story, afew things are different but afew are similar.
My son was firstly diagnosed with reduced proprioception, then last year with autistic spectrum disorder. He is now 8yrs old at main stream school , has his difficulties, but gets their in the end. He has aspergers syndrome.
I have just came home from a course on this. If you read the book by Temple Grandin called Thinking in Pictures it will answer most of your questions. Good luck.

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