How Autism has affected our lives

Clearly since we heard that there was a possibility of autism we have not had much time on our hands for anything much less blogging, but tonight, I didn't feel like folding the laundry, while watching a couple of shows I recorded with the pvr, No tonight, with Thanks giving here, I want to reflect on the past year, I want to share, and not that my blog ever gets much attention, you never know when a desperate parent may stumble upon this and hopefully find some peace.

Around the time when the boys were about 14ish months, I had many concerns, now I had, had concerns long before this that M and J, were not talking very much, or at all for that matter, but everyone including doctors told me it was just a twin thing, they have their own language and when they are ready they would start talking our language. This did not sit well with me, I mean they were over a year and had NO/NONE/ZIP/ZILTCH/NADA 0 words.. So I began to ask questions, The boys and I were regular members of our local Next Step/Mother Care group,(an amazing group of people and helpful organization I might add) I started talking with the Facilitator and Director and health nurses and children workers, basically anyone who would listen, they hooked me up with an amazing child worker, she was loud and fun, She helped me begin the process... before I knew it we were signed up on all the 1 year waiting lists for speech path, Occupational Therapy, Resource Teachers, as well as early childhood development referrals to get the boys into a daycare, so they could begin socializing to help speed up their development.

Well time passed and I had not heard much (remember the 1 year waiting lists), so I began to push and push my family doctor. She finally gave me a referral to a pediatrician. Towards the end of June 2010 We finally had our appointments with the Pediatrician, she immediately suggested the boys were autistic, and had us put on the ASD test waiting list (about 10 months long) Now I am not going to lie, at first my husband and I were totally devastated, well I was he was in complete denial.

It was very hard, I mean society teaches us that Autism is a severe disability, and hubby and I had been hoping to have another baby, but when the word Autism popped up we decided that they boys were going to need much more attention so we stopped trying, only to find out 3 days later we were pregnant...devastation set in again, how was I supposed to raise a baby AND two Autistic boys... I cried myself to sleep that night, and when I woke up in the morning, I realized that these to very precious boys are the exactly the same children they were before the pediatrician ever mentioned Autism, and I wanted another child then, why should that be different now. Besides now that we knew, we could start getting them the help they will need to live their lives as "normal" as possible...Happy again.

Not even a month after seeing the Pediatrician, our names popped up at the top of the waiting list for ot, speech...etc. AND...AND.. the boys started at the daycare as well, I was relieved that we had already started the ball rolling to start the services they needed, and now our waiting was over. Except for the dreaded ASD test... The rest of the year went on , and we began to see an incredible improvement in the boys when they would return home from school. (daycare).

Well March of 2011 came and we had our ASD test, as well as a precious little bundle of joy,a beautiful baby girl :-)

The test confirmed what we already knew... Both boys are at a medium level of autism. We had workers coming to our home now on almost a daily basis, and it was paying off.

Now I don't want anyone to think for a second that just because we have the boys in all these programmes that our lives are simple, because I guarantee you there is nothing simple about it. We have sensory issues... M does not feel pain or comprehend actions and consequences, J is very sensitive, aggressive and also does not comprehend actions and consequences. Both are non verbal (although they have started picking up some words, they don't know what the words mean, nor do they use them in context) which makes communication very difficult, they don't adapt to change well, and I know what your thinking "nobody does" well To someone with ASD change is worse, and M and J have a very special coping mechanism to help them deal with change, it is one that is a nightmare for us, but it seems to get their point across that they are not happy with the changes that just took place...It is fecal smearing, and I am not talking about a little finger painting with the contents of their diaper, I am talking EVERYWHERE, WALLS, WINDOWS AND SCREENS, CARPET, FURNACE VENTS, TOYS,CARPET, EACH OTHER!!! like I said it is a nightmare for us.... The boys are also very destructive, it is like they have super human strenght, who thought a 2 year old could kick a big hole in the back of their dresser??? they have torn up carpets, destroyed any book we have ever given them, and most of their toys are now garbage too. When M is frustrated, upset, doesn't get his way, or just having an over all bad day, he will bang his head off the hardest surface he can find, it is so scary, because he never just bangs it once, he has little dents in his scull, and there is no stopping him or diverting him, if you try he will bang his head off of your face, and then run and find a hard surface, J in a similar situation will throw himself on the floor, he will kick and scream, he hits and crys for what seems like hours. I am not listing all this to scare anyone, just showing that with all the help in the world, it is still not so easy.

We have some amazing times though, you know when you have a baby and they take their first step or say their first word? and you are overwhelmed with joy, you have a sense of accomplishment, you almost feel reassured that you are doing a good job as a parent, well With our little angels, we have the pleasure of experiencing that joy on almost a daily basis, because even though they cant talk in a way we can understand, they have qualities you would never expect to see in a 3 year old. M can count to 10 and he recognizes what the numbers look like, he has even been trying to count backwards, J has a photographic memory, We don't need a GPS to get anywhere we have been once before, because J knows the way, and let me tell you he loves 3 places, and gets upset if we dont go there when he is directing us towards, walmart, MacDonald's, or Nana's house.
Every once in a while a new word will pop out that they have never said before, and it is in context and at the perfect time, for instance; I was handing something to M, and in my efforts to teach them manners, I said thank you when he took it, well didn't he look up at me and say "your wewcome" ??? what did you say? although we have not heard it again, it was that joy that we must be doing something right that overwhelmed us.

I guess what I am trying to say, is that Autism is not, nor does it have to be a life sentence, yes it is a new ...Adventure every day, and yes you will have to work with it every day, and yes at least 1 parent does have to stay home from work (2 or 5 would be ideal but lets be realistic), yes you are going to have tons and tons and TONS of appointments, and yes Autism is expensive (even in Canada when we get all these programs free) and yes, a very high percentage of families with an autistic child are living at or below the poverty line. Yes you are going to have days where you want to give up, give in and quit, BUT when you pick up your sons (in my case) and look into their beautiful eyes, you wrap your arms around them and realize that God trusted you, that is right he trusted YOU to raise these precious, very special gifts, He chose you because he knows you are the very best person to raise this child, and that nobody in this world could raise your child the way you can, when you realize what a gift that is, everything else is just life, but the love you have with that child, no matter how uncommunicative they are, the loving bond can be seen in their eyes. It is Totally worth it.

So in closing, I know this is quite the ramble, but I hope that if you are a parent of a child with ASD, and you are reading this, that in some way, it has helped you realize that we are not alone, and there are people that understand exactly what you are going through. If you have any questions, tips, or even just want to chat about your child with someone who understands, feel free to leave a comment, I would be happy to talk with you.

Thanks for taking the time to read my blog

Niki DeVries.