When my children were born, I wished I had a guidebook for each one. The first year of motherhood would have been much easier. I would have spent a lot less time worrying about a fever or fretting about how to curb tantrums. I could turn a page and I would have all the answers to each child.
No doubt my child with special needs would need at least three manuals: one for his primary diagnosis, one for autism and one for epilepsy. I would also need some additional emergency books titled, “What Kind of Seizure Is This?” “Why He Won’t Eat” and “The Complete Guide to Sensory Issues.” Autistic meltdowns would require a complete desk set. Sadly, no such manuals exist.
Navigating parenthood is rewarding but also scary. Figuring out how to be a good parent takes trial and error. I have made my share of mistakes, especially with my child with special needs. I don’t have all the answers to my child’s medical and behavioral issues so it can be hard for me to be honest about the mistakes I have made as a parent.
1. I have made assumptions on the behalf of my child. There have been times I have not allowed my child to participate in an activity because I didn’t want to have to deal with the possible anxiety he would have. Sometimes this is necessary. I know him best and often get frustrated when others insist he do something when they know very little about him. In turn, I have also denied him the opportunity to find out for himself what he wanted to do.
2. I have sheltered my child. I have kept my son inside or away from activities for my own benefit. I have been afraid of the stares an autistic meltdown would draw in public. It has taken time for me to build confidence and know I’m strong enough to handle whatever might happen.
3. I have underestimated his abilities. Sadly, I had already determined he would never be able to do things like communicate efficiently or write his name. I was so convinced I was right about things like this, I would fail to push him to pursue certain goals. He has proved me wrong. His vocabulary has exceeded my expectations, and he can independently write his name.
4. I have played out his worst case scenario. Instead of thinking he could be independent some day, I have determined he would always be living with us. I think maybe I want to protect him as long as I can, but again, I shouldn’t set limits on his potential.
5. I have distanced myself from him. I know this is normal, but I have taken his outbursts toward me personally. I frequently forget he is at the mercy of his disease and the side effects of multiple medications.
6. I don’t always let him fight his own battles. I’m guilty of this with all my children. I intervene when I should let him try to work problems out on his own. Sometimes, I need to step back and allow my children some trial and error of their own.
7. I talk about him as if he isn’t in the room. This is something I promised myself I’d never do. I can’t assume to know he doesn’t understand what I’m saying. I have to be careful not to make him feel like we are not including him in conversations.
8. I haven’t always been patient with him. Patience comes with practice, and I have had plenty of opportunities to practice it.
9. I also have failed to be consistent with the way I handle things. I haven’t always stood my ground when he demands something in an inappropriate manner.
10. He needs structure and I haven’t always provided it. Sticking to a routine is hard for me. I have three other children and my son with special needs sometimes feels like two kids rather than one. It’s easy to get overwhelmed.
11. I have been lazy. There are days where my life exhausts me. I let this be an excuse when we do only what’s necessary.
12. I have put my needs before his own. I know my well being is also important and I do need to make time for myself, but any time I do so, I feel guilty about it.
13. I have wondered if I love him. I have made so many mistakes and have failed so many times that I wonder if I truly love him. Then I think about him and I feel how deep our love really goes.
14. I have given up. Yes, I have thrown in the towel on more than one occasion. I’m human and I get frustrated. He works so hard to grasp a concept and then his seizures increase, or we do a medicine change and he regresses. It’s hard to keep trying when we have to keep going back to square one.
15. I have failed to see the bond that has formed. Adversity really does strengthen a bond. We have been through a lot together, and I wonder why he likes me so much. I feel like I have failed him two times over. I feel like I have failed him as a typical mom and a special needs mom. It almost feels like I have the potential to make double the mistakes.
16. I have been a “helicopter” mom. There are times I would sit on his shoulder if I could.
17. I wish I knew what joy this experience has already taught me sooner. It is so hard to explain this to people who don’t have a child with special needs. I don’t want any of the difficulties for my son, yet he has taught me so much about life in such a short period of time.
18. I forget how much he has working against him. I have been frustrated when he can’t grasp what seems to be simple concepts. I forget to look at things from his perspective.
19. I have to keep reminding myself his age on the outside doesn’t match the age on the inside. I must remember to consider his developmental age and stop expecting too much from him too soon.
20. I am overly emotional. I know it’s hard for other people to understand why it’s a big deal when he independently wrote his name or put together a complete sentence, but it is for us. Learning is often an uphill battle for him, and we celebrate his victories.
My son is amazing and I love him deeply, even when one of us, or both of us, are at our worst. The responsibility of raising him and my other children is something I don’t take lightly. That may be why I hold on to so much guilt when I do fail. I want to be the best mom I can. This means I have to be honest about the mistakes I have made and learn from them. There is always a time to get real, try harder and give him the best of me.
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My husband and I have four children. We have numerous daily challenges. Our youngest son suffers from epilepsy (including Infantile Spasms) and developmental delays because he is severely effected by a genetic disorder called Tuberous Sclerosis Complex. Seven years after our son’s diagnosis, I was diagnosed with Rheumatoid Arthritis and Fibromyalgia. I write because I don’t want anyone to feel as alone as my husband and I did the day we learned our son had a life altering disease, or as alone as we often feel struggling with multiple diagnoses within our home. It is difficult for me to share my life with others, but my hope in doing so is to reach someone across the digital divide and say, “You are not alone.” Our challenges can certainly tear us down, and at times they have, but we hope the lessons of which can better our lives. I can only hope to help others by sharing our experiences.
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