Hello Fellow Special Needs Parents,
I just wanted to share with you some of my coping mechanisms and knowledge of being a special needs parent for almost five years now. My most important message would be this: Don't let the stress of raising this child eat you up inside. Take breaks from your child when you need them, and don't try to bear the brunt of everything because you don't want to trouble anyone else with your child.
Search your entire county and beyond until you can find a support group, and if you don't find one create your own. Seek out a counselor to touch base with at least once a month. Get to the gym, or get outside and take walks to combat stress. Get together with friends at least a few times a year. Communicate at all times any stresses you are feeling to your partner/spouse, parents, siblings and don't keep this stuff inside. Try to drink plenty of water and add fruits and veggies to your diet to help your overall well being.
Learning that Andy was going to be a special needs child swallowed me whole, and I continue to go through every stage of grief in cycles. In the beginning, I was completely shattered, and I would tell people this. They didn't know what to say to me. I knew I needed help so I sought out a support group at the rehab office, but I continued to let the stress eat away at me. I now am having major gastrointestinal issues due to all the stress, and have to act now to turn things around.
I didn't want to see a counselor, because I didn't want to pile on extra medical bills. However, I need to do it for my health, and I have to stay healthy and well for my son. I've learned that I can't constantly sit around and worry about my son, because it isn't going to change anything. It is what it is, and we have to still live our lives.
Over time, you will start to feel more like making a life for yourself, as well as being in your child's life as their caregiver. My whole life doesn't have to be a wreck because I have a special needs son. This is his life, not mine, it's his journey, I'm just a part of it. This situation can be as good or bad as I choose to make it. This is what I have learned, and things get better over time.
My son will be in kindergarten this fall, and he will love it. I will enjoy it too, knowing he has so many people on his team trying to help him do his best. It's not just up to me, I don't have to put everything on my shoulders. There are caring people out there that are willing to help you and your child can benefit so much from you letting other people into their life.
The best thing that has happened for me has been my son going to school. He loves riding the bus so much, and all the staff at his school. They are relieving me of all the burdens I thought only I should be bearing, and giving me some of my life back.
Please take it slow, and know that everything is going to improve over time. Find ways to still be yourself every once in a while, and don't lose yourself in all the stress. If you have other children, find ways to enjoy them without your special needs child. Don't let the whole family only revolve around the special needs child all the time. Network with other special needs parents, and find out how they handle things. So much can be learned from other parents, things you may have never thought of.
Find success stories, they can be found online through videos and blogs. Be sad when you need to, and grieve, you have suffered a loss in having a special child. However, you have no idea what your child could achieve, it's impossible to know what the future holds. I have been so uplifted by watching videos of children with cerebral palsy turn into young adults, and attend college. Stories of kids with autism telling how they could understand what people were saying to them when they were younger, they just didn't have a way to communicate back. Finding people that communicate by typing on a laptop because they cannot speak, and never could, but were able to learn to read and type. This could all be possible for your child in time.
Please take care of yourself, so that you can take care of your family. You are so important, and should treat yourself this way.
Take "special" care of yourselves, fellow special needs parents,