As a special needs parent, my hope is to be a voice for the kids and parents who still struggle with what to say to family and friends. I used to be one of them, too, before having a son with autism!
I have come to realize that in most instances, people do not mean to say hurtful things; they just truly do not know. Parents with kids that "do it typically" may not understand because they don't have to. But for parents with atypical kids like me, we need and should be able to share special moments and still feel accepted. My son may never take an advanced class, he may never be on an All-Star travel team, BUT that does not make his efforts count less. Special-needs kids work hard, maybe harder in many ways.
There is NO "typical" day for special-needs families; every day is full of the unexpected! To help others know what it's like to raise special-needs kids, I wrote a list of things I wish my friends knew about me as a parent. Here are my honest thoughts.
- I was not "chosen" to raise a special needs child. If your child was diagnosed with a special need, would you trade him for another child? I don't think so. Saying to me, "I don't know how you do this" or "better you than me" is NOT helpful. I do what I do every day, because I have to and, guess what, I don't know how to just everything all the time...and there are days I DO NOT want to!
- I worry all the time. I worry that I'm not doing enough. I worry that what I am doing is wrong. I worry that I caused the autism. When he fell as a baby, was this the result? (Oh my, I never wrote this anywhere before, but I always secretly wonder.) Will my sweet boy be able to live on his own? When we die, who will be here to take care of him? (This hurts to type; I cannot begin to tap into the reality of it all.) Will he will ever drive a car, or get married? The fears are tremendous, and so deep that...when you talk to me about your child getting into a top school, I tend to zone out
- I always need to be "ON." Parenting can be so draining for all of us. Mix in a special needs child and think overfull blender with no cover at full speed! I don't sleep well, and neither does my son. Six hours is a great night, and that isn't always straight through. In addition, I am a mom to two other kids who have NO issue telling me what they need. I'm also a wife, and I have very little help. Emotionally I am drained, and I'm usually tired. I won't complain much, even when I want to. As a side note to my friends, most special needs parents tend NOT to know how to ask for help...so don't be afraid to offer some!
- I feel tremendous guilt a lot. I am sure being raised Italian Catholic plays into this a little. I even feel guilty that as I write this, someone will read it and be hurt thinking it may be about them. I feel guilty that my daughters have to worry that when friends are over, their brother may embarrass them. I feel guilty that I want to be writing this while sitting by myself but, instead, I am trying to keep my son calm and helping him build a Lego house
- I feel envious. I know jealousy isn't healthy, so I go with envy. When your "typical" kids go to the movies with friends alone, or get invited to parties, or even tie their shoes by themselves, I get envious. (And I also feel guilty for feeling envy!) I do struggle with your child's accomplishments. I'm truly happy for you, and I do want to hear about it, but on the inside, I'm feeling sad for what our son isn't able to do.
- I will, and I do, parent differently. I allow my son to use devices at dinner. For us, it is survival and for our child, it is the norm. What works for you may not be best for me. As my friend, you should not judge. When you compare your typical child's experiences to mine, it does not help. The realities are different. Your rules are different. Although we have expectations of our child, the way he does it will not be the same as your "typical" kids.
- I won't mind if you ask me questions. If you're curious about something, ask me; there isn't a right or wrong question. I will tell you all I can. I don't claim to know everything, but I may learn from your questions. I would always love to talk about my son, which leads me to...
- I want to talk about my child. I want to share things he does, good or bad, quirky or not. Let me tell you about it. I promise the stories will make you smile. You may even get teary, but you will walk away with a fuller heart. Our children's milestones may not be the same, but they are just as important! (Just don't try to compare. It is not the same.) Also...
- I want you to talk to your child about mine. Let your child know that my child will do things differently. Tell your kids that all of us are different, and just because my son may not learn things the same way, it doesn't mean he can't do it. If there can be a common bond, try to find it. Be patient; my child wants friends, too.
- I want to feel included and accepted, too. It is not just our children who yearn for acceptance. Parents with atypical kids do, too. We have more moments of unknown than known. We live in a world where we must make sense of so much that may be unfamiliar and, at the same time, we have to fit into a "typical" world. We change hats all the time. We want to fit in and be included. Let us decide if we could or should be a part of your plan -- so don't exclude us! It is so isolating.
- I still want to have fun! I want to go out to lunch, have my nails done, and shop. None of this comes easily, but that doesn't mean I won't try. Don't give up on asking me. Even if I can't make it, when you ask, you make me feel included. (See No. 10)
Raising a child with a special need of any kind is a daily challenge and a gift. Everything is monumental when your special needs child does it. There is no such thing as a small accomplishment! As a parent, I continue to learn perspective, be more patient and kind, and appreciate little moments way more than I ever did.
Carissa Garabedian is a married mom of three children and two Shih Tzus who loves to cook and leave food on her friends' doorsteps. She is also the founder of KnowDifferent.net, a site focused on resources for special needs kids and families to create a sense of community. Follow her on Twitter @knowdifferent and on Facebook.
