Special Needs Parenting

Our 11 year old son Joshua has special needs. He was born premature and spent two months in NICU. He also has a genetic condition and had prenatal exposure to substances. All those things have lead to him having intellectual disability and anxiety. He is 11 but developmentally he is younger, closer to 5 or 6. Parenting a child with special needs comes with it’s own joys and challenges. He’s not like other kids so he can’t be parented like other kids. That’s hard as a parent. You can’t expect him to act 11 when his brain is only able to act like a 5 year old. That’s hard for others to understand when he looks “normal” but doesn’t’ always act like what you would expect from a child who should be in middle school. You constantly have to remind yourself to have realistic expectations so you don’t get frustrated. It’s is magnified in our family because we have a son who is 10, so we are constantly reminded what that age child “should” be acting like. It’s hard not to compare. It doesn’t help that our 10 year old is very smart and an old soul anyway, so that makes even more of a gap.

One of our biggest challenges is that when Josh gets mad he throws monster tantrums. Just imagine what a two year old kicking, screaming, throwing things, tantrum looks like in an 11 year old body. Compounding that is the fact that he’s going through puberty and all the lovely hormones and feelings that he can’t understand. We are getting help from an Occupational Therapist to manage the tantrums but I am also in counseling for myself and she is trying to help me work through my side of things from a parenting perspective. I know that other special needs parents understand what this is like. Many special kids don’t know proper ways to express anger and throw tantrums. Thankfully this is something we only experience at home, he does very well at school. That can make you frustrated though, because you think, “why does he save all this for when he’s at home? It seems like he can control himself at school, why not here?” What I have realized is that it’s because he feels safe enough to really express what he’s feeling here, which is ultimately a positive thing, even though it seems negative.

Here are a few things I’ve learned in dealing with this

First, tt’s okay to feel frustrated about your child throwing tantrums. Sometimes, I hear from other people what a gift a child with special needs is. While that is absolutely true, it can also be a nightmare at times. Josh has trouble with impulse control, regulating emotions and expressing himself which leads to him getting angry and thus the tantrums. As a parent I have realized I grieve that sometimes. I grieve that he will never be “typical” and he may continue to have these issues his whole life. It’s okay to acknowledge that and work through the feelings. If you deny those feelings, then you cannot resolve them and come to a healthy place. It’s okay to not be okay with it. It’s also okay to feel frustrated when people say “oh, special needs kids are such a blessing, they are sweet all the time and love everyone”. It’s just not true of any child, one with special needs or a typical child.

Second, when he’s throwing a fit, what is he trying to tell us with his behavior? Is he tired, hungry, overstimulated, or just hormonal? Can I fix any of that? Can I look past the behavior and see it for what it is? He’s not doing this to be mean or annoying, he’s trying to communicate and lacks the skills to do so.

Third, you needs breaks. When you feel frustrated walk away. Get regular time away. You will be a better parent for doing so.

Finally, when he does throw fits he ultimately needs to know he chose to do so instead of choosing to be calm and as a result of this choice he may not get to do other things. For example, today he was starting to whine and throw a fit about not getting the food he wanted for lunch. I told him “Josh, if you choose to throw a fit about this food, you are telling me with your behavior that you are tired and need to go to bed early tonight instead of going trick or treating.” He needs to understand when you choose a behavior that behavior may have consequences. I take myself out of it though. I say, “you chose this behavior, so you chose this consequence”. That way it helps him better understand he is in control of what happens in his life to some extent. He can choose to not throw a fit and get to participate in good things, or he can opt out of certain things by choosing to throw a fit. It’s not me giving him punishments, it’s him choosing a consequence. I tell him that I hope he chooses to participate in this fun thing we are going to do, but it’s his choice. It’s a hard concept for such a concrete thinker but I think we are making progress. He chose to not throw a fit at lunch, which is positive.

Have grace for yourself as a parent. I’ve made so many mistakes and tried so many different tactics trying to get him to change his behavior, but ultimately it’s not up to me. He has to choose for himself and I have no control over that at all. I cannot let myself get caught up in his choices, whether positive or negative. At least that what I tell myself on my good days, lol.

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