When you are a parent of a child with special needs, many things about day-to-day life are difficult. They just are. Yesterday, Matt spent two hours reconstructing Olivia’s bed so he could bolt it to the wall so she can’t move it across her room and scratch her floor, get into her closet or hurt herself. Then he strapped her mattresses together, and to the bed, so she can’t take her mattresses off her bed either. Her closet has a lock on it and we have many other reinforcements throughout our house for her safety.
But that is nothing.
One of the hardest parts of being a parent of a child with special needs is when you have to make them do things that terrify them (and you) even if they’re just normal, every day things. Olivia is attending day camp this week and next week. She has a hard time going places without me, especially new places. But we make her go. Because it’s good for her. They provide transportation to and from camp. I knew that would be hard for her, even more difficult than just going to camp, but Matt convinced me that we needed to make her do it. She has to do things to increase her independence, he said. She has to get used to doing things without us, he said.
But it’s not easy.
I put her on that bus and I know she’s scared and nervous and would much rather have me take her. She’d much rather be at home, in her pjs, watching T.V. than go to camp. But it’s important that we make her do these things to help her grow. Somehow it’s easier to let the boys do these things. They can express their fears, they know everything will be OK, they’re just naturally more independent. But she’s not. She’s getting better about telling me she’s scared, or nervous, or whatever she’s feeling, but it’s still difficult for her to express her feelings. She also has a difficult time with time. I don’t think she has any concept of the difference between five minutes or six hours. I think when she’s away from me, it feels like an eternity. So when I say it will be fun, you will make new friends, and I will be back in six hours, she only knows I’m leaving her someplace new.
It’s so hard to leave her.
These are the moments that therapists and doctors and intervention specialists can’t possibly prepare you for. You know therapy, doctor’s appointments, making friends, walking, talking, communicating, using the bathroom, getting dressed and a host of other tasks will be difficult. But dropping her off at camp or making her take the bus? That sort of blindsides you. But it’s something you have to do as a parent if you want your child to grow. You must. It would be so much easier to keep her home all day in her pjs and let her watch T.V. It would be so much easier to never leave her to always keep her comfortable. But isn’t that how we all grow? By doing things out of our comfort zone? It’s just so much harder to do with your child with special needs.
But it’s amazing to watch her gain independence and grow! I take so much inspiration from her, watching her get out of her comfort zone and do things that scare her anyway, and watching her gain confidence and independence. She encourages me every day. Isn’t that an amazing gift?
Great post. I love how you and Matt encourage each other through the hard stuff. Dream team!
Wise words. Love the Poehler quote. Thank you, Tiffany.
Tiffany. I could never express how timely this post is, or how desperately I need it. Once again you have expressed exactly how I feel, and validated me as a mother…Julia’s mother. Which is a whole different ball game than being mother to my other six. I appreciate all you’ve said, it’s absolutely true. Thank you for forging the path…I’m toddling along behind you.
My son is almost 5 and we just found out he has cri du chat. I am so unsure of what to do or where to start! Just trying to find information and follow others in my situation. Would love any support or tips!