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 quite a while. My most important message would be this: Don't let the stress of raising this child eat you up inside. There are times that are going to be so awful, so please, don't let it be the only thing going on in your life. You need distractors, and a chance to get out of your head. I have to balance my life out with other roles besides mom, advocate, and wife. It is mentally very hard to focus only on Andy. Diversions have to be made. I've learned to ask people for help when I need a break.
There are times when we cannot get Andy to stop crying. Sometimes, we just have to put him in his room and walk away to decompress. It's okay. Please don't try to bear the brunt of everything, because you don't want to trouble anyone else with your child. Let teachers help. Let therapists and social workers help. They will lighten your heavy load. Let them be a part of your child's life, they will make your journey more enjoyable.
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 when you need to. When your child goes to school, get to the gym, or take a walk to combat stress. Get together with friends at least a few times a year. You need to socialize with others and feel normal again. Communicate at all times any stresses you are feeling to your partner/spouse, parents, siblings and don't keep this stuff inside. Try to stay hydrated, get enough sleep and eat healthy when you can to help your overall well being. His pediatrician used to tell me, "You can't take care of him, if you don't take care of yourself".
Learning that Andy was going to be a special needs child swallowed me whole, and I continue to bounce around 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, but I continued to let the stress eat away at me. I started having major gastrointestinal issues, and heart palpitations due to all the stress, but I'm turning things around.
I went to a counselor when I needed to, and I've gotten back into school for a career detour. It's been an amazing change for me, although stressful, but it's what I needed to do for me. I've learned that I can't continue to sit around and constantly worry about my son, because it isn't going to change anything. It is what it is, and we still have to live our lives. Now, I just wake up, and I am thankful to be alive, and look forward to any new experiences I get to have.
Over time, you will start to feel more like making a new 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 loves school. 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. Having Andy in school is a huge help. He loves riding the bus so much, and all the staff at his school. 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.They are relieving my husband and I of all the burdens we thought only we should be bearing, and giving us some of our lives back.
Please take it slow, and know that you will acclimate to this new life 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. I've gotten to take my older daughter to the movies several times last month, and it was so wonderful. 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.
Be sad when you need to, and grieve, you have suffered a loss in having a special child. Be sad, and then move on to find small bits of happiness where you can. You have no idea what your child could achieve, it's impossible to know what the future holds. Stay in touch with a genetics team/doctor, you never know when a gene therapy could come along to help your child.
Find success stories, they can be found online through videos and blogs. 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,