Sunday, September 22, 2013

Caring For My Son With Special Needs {part one}

No, my son is not autistic. He does not have down syndrome. I won't sit here and try to pretend that I know what it is like to be a mother to one of those sweet angels either. But I do want to tell you a story. A story about a huge wake up call.

8 years and 10 months ago my husband drove me through a snow storm, 2 hours away from our home to a hospital that treats high risk pregnancies. I was scheduled to be induced and nervously awaited the arrival of our 2nd child, a boy. My pregnancy by any standard was normal, however there was an unknown abnormality in the baby's abdomen that had shown up during my 20 week ultrasound. The worst case scenario (a name I can't remember) was a problem with his kidneys. The best case scenario was that cysts had formed on his intestines. Our Doctor was fairly certain it was the 2nd case, but wouldn't know for sure until after the delivery and tests were done. I was nervous and didn't sleep most of the night even after being given Ambien.

The next day I was given Pitocin and since I had arrived at the hospital already dilated to 4 cm, I was fairly certain this was going to be much easier than my first experience with birthing another human being! After my water broke however things started going wrong. The baby's heart rate would drop significantly with each contraction and after an hour of trying unsuccessfully to change the situation, I was wheeled in for a C-section. I remember at one point while the nurses were trying to get the babies heart rate up, the doctor came in and asked how I would feel about a C-section. All I said was "I don't care how he comes out." All I wanted was to have him out and to know that he was OK. And when I finally did hear his little cry for the first time, my own tears started spilling out. It's the only time I've ever cried when one of my children was born.

We were incredibly fortunate to find out the next day that our son did have a small cluster of cysts on his small intestine, but that his kidneys were in perfect working order. My little baby had surgery on only the 2nd day of his life, but recovered well and came home a week later. He nursed like a mad man, became the fattest thing I had ever seen and grew to become a little charmer.

There are so many details I could give over the next several years of his life, our lives, but this is all you really need to know. He had endless amounts of energy, I was young and frazzled, my husband was in medical school, and life became about survival. I survived by letting him watch cartoons for hours on end, by having our oldest daughter do all the cleaning up because she generally did it without complaint, and by eventually signing him up for preschool. Only, he hated preschool. He caused trouble almost every day and he would tell me every night that he didn't want to go to school the next morning. So, after 3 months I took him out and kept on surviving.

By the time kindergarten came around we had 3 children and I couldn't wait for the freedom that would come with having 2 kids in school all day. I love my kids of course, all of them, but I get overwhelmed easily and James was getting harder and harder. He teased his little sister constantly, made huge messes everywhere he went, could not follow the simplest of instructions, and argued about everything I asked him to do. So, even though he told me every night that he did not want to go to school in the morning, I said "Too bad, you have to."

First grade was a nightmare! He hated his teacher, and I'm pretty sure she didn't care for him much as well. It was sort of like a preschool re-run. I was constantly getting emails about what horrible thing James had done that day and every night he said "I don't want to go to school tomorrow."

Second grade was a tad bit better. His teacher was a sweet lady who had been teaching a very long time, and even though she had been our daughter Samm's teacher two years earlier, she never expected James to be exactly like his sister. She disciplined when necessary, but always gave the kids a chance for redemption during the course of the day. Homework really picked up this year though and after school became the nightmare. He would put in the least amount of effort possible to get the work done, and I got tired of fighting him so I didn't push him to try harder.

This year we were all excited. James included. He got the fun teacher. The one we were hoping would finally help him take off. After the first day of school he said "I can't wait to go to school again tomorrow!" By the third day though it was back to the same story of begging me not to make him go the next day. He liked his teacher, but he still hated school. And for the first time, he was dealing with social issues.

Aside from hating school and not being wanted during recess football, there have also been other problems. Issues I tried for over a year to pretend didn't exist. After years of being told "No. sit still. why cant you ever listen. what were you thinking." his sense of self worth had been all but squashed. I cannot even tell you the number of times he has threatened to run away because "no one loves me." or how many times he's said "I'm the worst boy ever." And most recently he has started asking me " what would happen if I jumped off a really tall building and died? what would you do?"

Do you have any idea what it's like to hear your child say something like that? How terrifying it is?


Anonymous said...

I am not a mother, I do not even work with children, but I am a master's student in family relationships with a bachelor's in psychology. I dont even know how I got to your blog and I am not sure if you are asking for advice, but I was wondering if you have had your son tested for any attention deficit disorders, or even depression? Childhood depression is possible, and there are therapists that specialize in child therapy. Your son sounds so sweet and I love reading birth stories, his is a great story. Thank you for sharing it! When my parents were no longer able to help me with my depression as a teen, they sent me to a therapist at LDS family services and it helped me so much. It's definitely worth looking into and your bishop can even refer you to them if you need help paying for it. good luck! I am inspired by mothers like you who pay attention to their children and are proactive in caring for their needs.

Sally said...

Thank you for sharing your insight and experience. We are in the process of getting him set up with a counselor. Unfortunately, the only person with LDS services in our area that sees children is about to have a baby so we are looking into other options.

Seth and Julie said...

So sorry you are dealing with all of this and I hope you are finding answers to your prayers along the way. My only boy is also very high energy and very self deprecating. It is hard to even correct him about anything because he will say terrible things about himself. He does like school though. I mean, all kids would rather be home, but he likes it well enough. Anyway, I am curious to see where this road takes you and as always I appreciate your honesty about your life.

Also just a thought...Tae Kwon Do has done wonders for Alex's self esteem and confidence. I know you guys are already knee deep in other sports but I thought I'd just throw that out there.

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