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I know that being a parent can be exhausting, and it does have its ups and downs. It’s an amazing job, but I wonder how much harder it might be for a parent with an autistic child. I decided to interview a mom, who has an autistic child, to find out more about the challenges she faces, as well as any advice she might give for someone who might also have a special needs child.
1.Describe your child in terms of age, sex and symptoms and when you started to notice them.
Brennan is very active and affectionate. He makes sounds that mimic words and expresses when he is feeling good or bad. He also cries, yells, and sometimes hits. He used to be more aggressive and would head butt your face without warning, but that tendency has gone away. He hasn’t always made eye contact and that was really the first symptom I noticed. He wouldn’t look at my face and new babies start looking at faces right away, so I began to worry. He wouldn’t eat food, and he wasn’t walking so I started taking him to the doctor. I took him to the first steps program through the health department and then was connected with the sum center for speech and child development. This center helped us realize that he was definitely autistic. At the time, health insurance wasn’t covering the therapy Brennan needed, and my husband’s job prevented us from getting Medicaid so I went through the social security office. Brennan was declared disabled in order to get help with his therapy expenses. I then put him in the learning disability preschool program offered through the local school district and that proved to help Brennan tremendously. The social interaction with people improved everything for him. Now he is in a sensory based classroom, and he is a different child. He makes eye contact, he points with one finger, he makes deliberate consistent sounds, and he understands and follows one-step directions with 90% consistency.
2.What challenges do you face in parenting a child with autism?
Well, honestly everything is a challenge. Taking him places is hard, as he tends to run away. Other people are very judging no matter how he acts, he is not silent and people look at us like we are crazy. I can’t do the things with Brennan that I can do with his brother, and now that I am a widow, we just cannot do those things. I feel responsible for him in every way and every day he doesn’t talk to me feels like a day I have failed. Just this weekend he was stung by a bee or something. He didn’t tell me, and he didn’t point to his foot. I noticed it was swelling and asked him about it, so he winked his eyes and held his foot up. In addition, it is hard to form a bond between the two boys, because his brother resents the attention Brennan gets now that there is not another parent to help with the attention giving. Unfortunately, I don’t have a choice on a way to change that. I never know if what I am doing is right, but I just keep going telling myself that it will work out the way it is supposed to work out.
3.What advice would you give someone else who is raising an autistic child?
Get in at a college where students are learning therapy techniques. They will help your child and you will be able to see what they do, and they will explain. Also ask questions and never take NO for an answer. There is a book called “Win Win IEPs,” I think is the name of it. It is about making IEPs because I think I cried through the first 5. They are hard to make, the language hurts when you are talking about your own child, and this book helps you understand how these hard conversations can actually be helpful.
This is the book she is referencing:
4.What do you enjoy most about your child?
He is a beautiful, affectionate, smart child. He is happy all the time, and he doesn’t let his lack of language ruin his day. He is a funny little prankster and is just a joy to be around. Plus, he looks just like his dad.
5.What kind of things does your child need help with most?
Well according to his diagnosis, he needs help with everything, and he does in a sense. But he is getting better every day at being independent. At this time though, he needs to most help in the area of establishing his place in a group. He tends to be a bystander, but it’s clear that direct social interaction helps him tremendously so as of right now on his IEP we have set a goal for him to take part in group activities and become aware of his place in a group or game type setting.
6.How does education work for him?
Well I don’t think I can say enough about the importance of social interaction. Brennan seems to benefit from getting directions from people who aren’t me. For example, Brennan he is ten times more likely to write something if his teacher asks than if I do. He likes the structure of being at school and seeing the other kids. Brennan loves to be around people, and he likes a lot of attention. Brennan never meets a stranger, which is scary for me but also a good sign to me. I know other autistic people-some are adults and I feel they all have a capacity for learning and functioning, but it’s the social awkwardness and the social confusion that trips them up. I make a great effort to help socialize Brennan.
His education is different from regular kids his age. When his brother was in the first grade, he was reading and doing math. Brennan. on the other hand, is still learning to hold a pencil in the first grade and all of his assignments are based on the act of doing an assignment rather that what the curriculum is. He gets speech therapy and occupational therapy at school too so that is another way the school helps. What I was told and what I will say to a new mother of an autistic child is that now you are a warrior and be ready to stand up tall for your kid! You are your child’s biggest and only advocate.
For more information on autism and to read other resources, please this page.