One of the things that I haven’t really spoken about in any detail at all is acceptance. Not just acceptance of our children, but of the family as a whole.
I will never forget the day that I found out just how ignorant people can be. We were out with other people and they said “no offence but seriously do you have to exaggerate your kids issues so much?” (Back story: I have one child with Spina Bifida, Hydrocephalus and a chiari malformation who has a 3 page long list of allergies, some of which are fatal ingestion allergies… I also have a child who has fatal nut allergies so severe that he starts to get water blisters on his face if he’s even in a room with nuts in it… he can go into anaphylactic shock within 5 mins of being exposed to them, and within less than a second of ingesting them.) I looked at the person and said “and what, exactly, do you feel I’ve exaggerated on?” And they replied “the severity of the allergy. I’ve never seen him react.” I said “and be thankful for that.” Well, the next time we were with them they invited us to their house. My son walked in the door and we turned around and walked out because he had blisters on his face in under 1 min. The person apologized profusely and swears up and down that it was an accident, but they had nuts out in dishes in 2 rooms. I have serious doubts about the fact that it was an accident, but I don’t know for certain. One thing I can tell you is that we haven’t been back to their house since that day.
If a family of a special needs child invites you into their lives, please don’t make it your mission to prove to them that they are “wrong” about ANYTHING to do with their child. No offence, but they have known their child a lot longer than you have. They have experienced the good, the bad and the ugly with their child and their child’s diagnosis. They have spent countless sleepless nights pouring over information and trying to find ANYTHING new that might help their child.
If you’re a parent of a special needs kiddo, DON’T make it a competition… in any way. Don’t say “oh well my child has (insert diagnosis here) and that means that we never get to do that. Count your blessings that you can do it sometimes.” No. Just no. If another parent has opened up to you that they are feeling (insert emotion here… but most often it will be frustrated, upset, angry, lost, left out, hurt, etc) please please don’t try to one up them or make them feel badly for even bringing it up to you. It’s hard for most parents to open up. It’s even harder for most of them to ask for help. So, if they are asking and you simply can’t help them please just say “no I am really sorry, I can’t help you today.” Maybe offer up a suggestion or two “I have the name of a great sitter who has experience with special needs, if you would like?” Let them know that they have an ally in this crazy world and just try to be there in whatever capacity that you can. Life is to short to feel as though you have to go at it alone. In the words of Ellen… “be kind to one another”
Until next time, take care of yourselves ~C