Every day I struggle as I am sure most parents of special needs children do. Some times it is because I fear the worst for my angels, and sometimes because I feel the rope slipping. I am often asked how do I handle them, how do we deal with it. Mostly people who have not experienced it say things like they feel sorry for us or they will pray for us. While we are grateful for those prayers and well wishes it is not what is needed. The biggest difficulty in having a child and especially multiple children on the spectrum is it tends to show you who your real friends and family are. Unfortunately you often find the number much lower than you had thought it would be. People who used to always be there will slowly move away. But it is not all sad. The friendships you forge threw this are often the strongest and the ones who survive this are the ones that you should actually care about.
What we need as parents of children with ASD, and other special needs children is often just an ear. Some one to listen with out judging and presuming to know all the answers. Some times a shoulder to lean on when times are tough, and when the world tells us our children are hopeless. Some one there besides us to have our backs when we tell the world that it can take its opinion and shove it. We need some one who will understand that the word no is actually not always in our child's vocabulary. That often our children are much like ferrets. If it is shiny and with in reach they will go for it and you may never find it again. But above all else, patience. Understanding that we are not blowing you off and we wish we could go out to eat with our friends more often or spend more time hanging out. You see its not easy being the friend of some one with special needs children, because when every one else wants to go get coffees and hang out most of the time we have to say no. Just realize it is nothing against you. It is simply that we have no choice in the matter.
I love my children with all I am or can be. While I can never say this to them because it is not their fault at all. They have in a lot of way locked me into this home. I do not blame them I do not resent them and I will never make them feel as though I do. I love them and I simply have to take care of the two wonderful angels I have been blessed with. Granted my two angels require a bit more attention and a HIGHLY specialized diet of cheese, turkey pepperoni and graham crackers.... It is ok.
So when asked how I handle my children. I don't handle them. I do not deal with them. And I certainly do not survive them, I love them and I cherish them just as any other parent would. I am grateful for the good I find in them. The innocence they remind me of and purity of heart I wish we all could strive for. My angels will never lie to me, They will never say they hate me or avoid me. And If i am what they deserve and try my hardest to love them I will always be their hero.
I think the biggest thing you have to remember about any parent in my situation is we have to live by one very sad rule. Expect the best and prepare for the worst. We all pray out children will be able to function normally or at least close to normal as adults. But in the back corner of our heads we have to be practical and realize what if it does't turn out that way. We cant wait till last second to prepare for it. So the whole time your encouraging your children and pushing them to grow and learn. You have to prepare for the chance that they will never be able to do any of the things you are trying to teach them.
I guess what I am saying is this. As parents of special needs children we often find our selves alone. If you are willing and strong enough please be that friend that some one needs so dearly. Be patient with them and understanding, and for gods sake don't leave priceless breakables in reach when you invite them and their children over....
Ray.
P.S. Isa says thank you mommy for lamby 2.
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