The Wish List

 

    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. 

Father's day

Every year I use father's day as a milestone. It has become a way for me to look back on the year before and see how far my kids have come. Last year I had a screaming little girl and boy all day. This year I had a sweet little girl snuggling all morning and a little man trying to sneak a second ipod.

I know I started off the day with dishes and such but it is still a great father's day to me. I don't need to go any where or get anything. Just a calm day with my babies and wonderful wife. 

For fathers day this dad just wants a relaxing calm stress free day. That's all.

Now something tells me that's not very likely lol. But it's ok.  I know they would if they could.

THE RANDOM FACTOR

I think the biggest thing most people do not understand is why parents of autistic children look so frazzled. It is not because they make us loony. Or they are horrible children. Its the random factor. They can be sitting so quietly or playing with a smile. Then BOOM instant freak out. I WANT BUBBLES!!!!!!!!.. the problem is she doesn't want bubbles actually. She is hungry. But doesn't realize what that means. So she tells us she wants bubbles. Or a bath or to go out side.

The whole process of trying to understand especially non verbal autistic children and give them what they need is enough to put most into a panic attack them selves.

Every minute of every day from 5 am till 9 pm is a ticking time bomb of a loving little girl and boy who any moment is going to blow up over something that to you and i doesn't even matter.

My son is especially bad at this. He will be lining something up and because he cants get this one block in EXACTLY the right angle and tilted EXACTLY the way he wants " it might be off by 1/1000th of an inch.", My son will go ballistic. He will start screaming and loosing it. Eventually he even throws all the blocks on the ground. Then he picks them all back up calm and collected and starts setting it back up in typically EXACTLY the same way.

What I am referring to in this post I'm calling "THE RANDOM FACTOR" Its something that all autistic families have to deal with.

So.... how do we deal with this.. We don't, we work with them and love them and sit patiently with them when they have these meltdowns over what might think to be trivial. But to them it means life or death. It truly is the END of the world for them that that block did not line up exactly right. In some cases like my daughter its communication. most children even non verbal would simply lead you to the fridge. When Isa wants a drink she takes you to the back door or to the bath tub. When she is hungry she makes you rock her or demands bubbles.

A week of adventures!

This week has been insane. Been having a rough time with isa sleeping. But seems that is under control last night she slept well. No issues at all.

I had to pull the washing machine apart because the catch before the drain pump was clogged. A wee little sock was the issue.

And Mr bun bun the newest member of our family has made a nice home and been very active and social. Little guy loves hanging with us and just chills snuggled up. Never thought a bunny would be like this.

Nevin has learned some new dances even apparently a drop it like it's hot move as mommy dubbed it. Trying to figure out were he got that one as we don't have that stuff on TV at all.

But despite drama and insanities I do believe that it was a good week.

Now daddy needs some sleep lol.

Zzzzzzzzzzzzzzzzz.. lol

We even got to see Ms Nikki and Ms Cassie from neurotherapy at the big easter egg hunt at healing place... where we won the bunny.

Well catch you later

Ray

Tender little man

Nevin I have to admit amazes me some days. Heck he amazes me pretty much every day. You see my son can he the loudest most insane random child. He wakes up and starts dancing and maybe takes two 15 minute breaks a day. So from sun up to sun down he is dancing, bouncing, running, swinging and climbing.
But when he does calm down he takes the time to gently move all the stuffed animals and his sisters dolls to the couch and set them up like they are watching TV. Then he will just climb in the middle and sit with them.

I have even caught him dancing with Isa's life size doll.

He has the most gentle heart in the world wrapped up in a body bursting with energy and all the best intent.

And even after the hardest nights with my little girl. Momments like this give me the energy I need to keep going and going, and going, and going.

Quick some one tell energizer.  I think I got their bunny beat lol

Long days and ... well I think there was a night in there somewhere?

Today was one of those days that I couldn't wait to end. These long nights and barely any sleep are starting to wear on me. I know I do a night here or there of good sleep. But I'm to the point now that even a week of that wouldn't make me feel better. I could probably sleep for a few days non stop.

Now don't get me wrong. I love my angels with all I am. Just seems like more and more I'm falling well short of the energy to need to even get the day going.

I keep praying for breaks in the kids development and that things would get better. But it fills like it only get worse.

He says " I'm cool like that yo"

Today has been calm compared to yesturday. Nevin did his normal picking on sister and nude trampoline time. Isa did her normal tragic dialogs. 

I'm noticing a new thing for my son. As his sister becomes more vocal and does more that he does does. His answer is to just become louder so he don't have to hear her. If she is singing a long with a son he will start bellowing at the top of his lungs. If she is playing on ipod and he likes what she is watching he will find the same thing on his and turn it up full blast. To drown hers out... While this is not really a new thing the extreme he is taking it to now is.

Good night peoples.