Hanging by a Thread

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When I used to think about starting a family, having children, I knew that there were going to be bumps along the road. True, I thought mostly in infant to toddler terms. Lots of crying (from mom and baby), poop, slobber, mess and screaming. I knew that babies were hard and toddlers drove you crazy at times. But thinking back, I didn’t think much of what my children would be once they reached school age.

I have always prayed that my children would be a light to their peers. That they would seek out the lost and hurting kids and show them love and friendship. That they would be known as kind people who were true and honest. Grades were never a concern to me. They still aren’t. I assumed my children would progress at a normal age appropriate pace. I knew there would be homework and assignments and field trips and friends and play dates and school carnivals. But I did not entertain the thought of having a child that could not seem to grasp anything about school.

Jonah is in 2nd grade this year. He’s passed the grades of being a ‘little kid’. He’s reached the grade where they focus on independence and keeping up with the class. I have other friends who have children in the 2nd grade. One mom told me how amazed she was that her son is reading chapter books and that he cannot get enough of them. Chapter books?! My son can’t even read at a kindergarten level. In a few short months his sister will have passed him in reading and in math. And the worst part? This year he knows he’s behind. He knows he’s different. He knows he can’t keep up. And he knows that the kids and the school staff see him as different.

About three weeks into the school year Jonah fought with a boy on the playground. The boy was done playing and Jonah wasn’t ready to let the kid move on, so the boy ran and my son pursued. Jonah ended up going down the slide after this boy with his feet wrapped around his neck resulting in cuts to the boy’s neck. School had been going so well for him up to this point. I was in hopes that all of our hard work from the previous year was paying off and that we’d be able to move on to an academical focus.

I agree that consequences are in order for an uncontrolled act like this. I even suggested that some sort of structure be put in place to help Jonah make better decisions when on the playground. His immediate consequence was no recess for a week. So, 3 times a day for a week he sat in a chair in the office. He had an amazingly good attitude about it. He then had to do a write up on his actions and a plan was put in place to control him.

Lately I’ve been asking myself, ‘how can one kid be screwed up in so many ways?’ I personally love him for who he is. I also think that he is very misunderstood by 99.9% of the population. It seems that almost daily I am told by some professional from the school what they think would be best for my kid and how to implement their plan to fix him. First he was given 3 choices of what he was allowed to do on the playground. Choices that kept him away from kids and discouraged social interaction. Then it was opened up to 5 choices, but again, he was restricted from his peers. Jonah HATES the 5 choices. Hates it. But he maintained a relatively good attitude. Then they started pulling him out of class a half hour a day for reading help. Again, I agree he needs the extra assistance. After our IEP meeting they started pulling him out of class for another half an hour a day for math assistance and that pushed him over the edge.

Math help has interfered with activities in class that allowed him to feel special and let him make connections with his peers. The 5 choices on the playground isolates him and he’s repeatedly told me they are his punishment for hurting a boy. I’ve been told by the IEP team that the 5 choices will never change. Jonah’s aware of this too and he feels extremely isolated.

So what would you expect with all of this tinkering? Well… essentially we’re back to square one. All of the self loathing, anger and aggression has come right back into the home. His listening skills have decreased, his attention at school and karate are horrible and his self esteem and peer relationships have been crushed. Why can’t my son just be my son? Why must he be pushed and pushed to keep up academically when he clearly needs more help. I do not blame the school and I highly appreciate his teacher, but I feel like every ‘specialist’ has to have their hand in the pot and give it a stir. Just last week I was called by the sub-in speech teacher to have his pediatrician look at his tonsils and adenoids and possibly  have them removed. I was told by the autism specialist that I needed to talk to his doctor about medication and that if I didn’t follow up on her suggestion I was stifling his success at school.

I get reports of his behavior in every social setting he’s involved in. Everyone has a report of his lack of success. Hardly do I ever get a clean report of what a good kid he is. There is always a negative side to any report. I get it. My kid is difficult, a disturbance. And this is where I as a mom feel completely helpless. I get report after report of everyone’s professional opinion about how to ‘fix’ my child when all I really want is for him to have a good attitude at home and try his best in whatever he does. I know that on an individual basis everyone is just trying to help. I know that and I appreciate that we are surrounded by people who care. But I often wonder if those professionals who are heaping out opinions and solutions ever stop to think about how much ‘advice’ this mom gets on a daily basis. It’s swallowing me alive! And I feel that there’s no way out. That I have a child who will never amount to anything because he can’t read or write or spell or do math like his peers. I feel completely alone. Not even my husband shares my daily burden. I get the tears after school, the anger, the words of poor self worth. I get the calls from the school, the emails from the teachers, the ‘advice’ from the professionals. I am told over and over how to ‘fix’ my son, but he’s NOT broken!!! Sometimes I think that if all of the hands just backed off and tried a minimal approach they might help him in the best way possible.

Raising children is not an easy job. It’s messy and there’s no particular formula for success. We as parents just have to jump in and be involved. We have to try and if something doesn’t work we have to try something new. We have to be physically and emotionally available, remain firm, but also be loving. We have to let our children know that we have their backs and we have to be their voice when they have no voice.

Raising a child on the spectrum is at times a nightmare. Not only do we have to work with our child on a personal level, but we have to address them on a social level. In my experience, school and autism do not mix. It is a parent’s constant battle to protect and guide your child, but also give your trust and control over to the professionals. I have to be involved, but not overbearing. Loving, but firm. Teach him independence, but also help him find his way. And I believe it will be like this his whole school career.

A parent’s job is never done. An autistic parent’s job is twice as hard and heartbreaking. I feel beat up, misunderstood and at the end of my rope. And still I have to get up every day and fight for my child. Every day. I often wonder what it’s like to have a family with average or even above average kids. Kids that have fun at school and keep up with the class. Kids who can sit still and do homework. Kids who have friends. These are things that I can only wonder about because they aren’t a reality in our home. I am hopeful that my daughter will have a much more steady and ease with school and peer relationships, but we will always have a son who needs that extra this and that extra that.

Do I regret him? Absolutely not! In fact, I consider it a great honor that God gifted us with him. He obviously saw something in us as parents that could be strong enough to handle a child like Jonah. And I know that God has a plan for both of my children and for me as well. I’ve had a handful of caring mom’s who have gone though exactly what I’m going through right now and they have been such a light to me. I hope to one day lend a hand to other mom’s who are dangling from the last thread and I plan to approach them with love and understand rather than a way to ‘fix’ their child. I’ll hold back from the negative reports and offer only a kind word and maybe a few hours away from their child. You can only truly appreciate something once you’ve lived it. And day by day I certainly do live it.


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