I can’t tell you how many posts I see about the blessing of a special needs child. Yes, all children are blessings including children with autism. Sometimes parents, friends, and relatives get so stuck on the child having autism and pretending everything is typical that we forget to talk about the truth of living in Autismland. Additionally, there is the stigma attached to any parent who decides to talk about the less than stellar aspects. You get attacked for “trying to take away your child’s autism.” Can you tell I’ve heard this one before?
Sometimes You Wonder Why
Why me? Why my child? We all do it, but we are afraid to let others know because that makes us look like a horrible parent. It is normal to wonder why you got the invitation to Autismland. Why can’t my child have just been typical? You wonder why if you did something wrong during pregnancy or during labor. You wonder who thought it was a good idea to give you a special needs child. The truth is, you wonder what life would be like if you didn’t have a child with autism. How would Logan’s life look differently if he didn’t have autism and all it’s co-occurring conditions.
Sometimes Duty Overshadows Love
It is hard to feel an overwhelming love towards your child when your entire life is wrapped around your child’s need for order and routine . It’s never that I don’t love Logan, but its hard. It is hard to show love the way you could to a child that doesn’t have sensory issues. Sometimes you can’t cuddle with them, hold them or even touch them. Logan used to crave proprioceptive input so much that he would bear hug you. It was hard not to feel resentful when I knew he didn’t want a hug. He just needed the sensory input. Don’t get me wrong here. I would jump over the moon for Logan no questions asked. To say that there weren’t days when my sense of duty as his mom kept me going would be a bold faced lie. There were some unlovely days especially when he was non verbal.
Sometimes It Can Be Really Hard
The truth is, it is extremely hard to live with a child with autism. They drain you physically, emotionally, and financially There are always appointments; always meetings; always medication or medication alternatives.; always schedules. It is hard to even stay afloat on a daily basis. Not to mention dealing with your actual child and their emotions, outbursts, and lack of understanding. During the autism rising days, I have to remind myself that Logan doesn’t do it on purpose. He doesn’t enjoy melting down in public or being unable to handle the noise level. He’s not having a fab time either. We just have to hang in there together until better days come.
You Feel Isolated
No one other than other special needs parents really understand your struggle. Sometimes, you just feel isolated. You can’t take your child anywhere without getting a pep talk, someone telling you how to do it better, or someone handing you a parenting book. When you are out, your child doesn’t have his therapy swing, his favorite toy, or his quiet place. You have to remember things that other parents don’t like noise cancelling headphones and always be on alert for sensory overload.
So, instead of feeling upset with the way others react or how your child behaves, you isolate yourself. You don’t go out. Even when you are with another parent who has a special needs child, having two children with disabilities in the same room can be more than you can take. So, you feel isolated even in the midst of trying not to. You end up depressed and alone in ways non autism parents can’t understand.
You feel Guilt All the Time
Living with a child with autism makes you feel guilty all the time. You feel guilt when you can’t give your spouse attention. There is guilt as you miss your other child’s first dance recital because you had to stand outside with Logan who couldn’t handle how loud the music was playing. There is guilt when you politely decline going out with a friend for the millionth time. There is guilt when you want to leave your child with autism with a sitter and can’t find anyone who is capable of caring for his needs. There is guilt that you can’t afford all the care he needs because insurance won’t cover it. There is enough guilt for everyone.
We Need a Break Sometimes
No matter how much you may love your child with autism, we all need a break. We need time away. We need time to think. We need time to be a person. But, most importantly, we need a break for our own sanity. Because we know if we keep going, we are going to lose it! self care is never selfish. It makes you a better wife, person and mother. It helps your child to have a fully rested, healthy and present parent. We all know that we have to live forever to care for our children with autism. If not forever then at least a day longer than our children. You can’t do that if your stressed and unhealthy. Make it a priority to take care of yourself.
The truth is, living with a child with autism means sometimes we lose our cool. If you are an autism parent, you are not alone when you reach for that bottle of wine. You are not alone when you feel less than loving towards your child. You are not alone when you are on the brink of an emotional break down. The truth is we all feel like this from time to time, but nobody talks about it!
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