The war within

[speverly]

It has been a long time since I have posted anything anywhere.  We are in our 6th day of the Gf/Cf diet and all H#*% has broke loose at our house.  I went to our local library to try to find additional info if I had missed anything and just out of desperation for a way to make this easier on my boy.  Wouldn't you know my library has a whopping 4 books on Autism and only 1 I have not read yet.  I thought I would pick it up and see what it had to say but when I went to grab it I could not make myself pick it up.  I all of the sudden became very angry and walked away.  The book I believe was titled Autism and the God connection (close enough).  I have thought about this for a few days and have come to the realization that in my heart I do not want to read or hear anything that is even remotely a message pertaining to God and Autism.  I have worked so hard since our son was diagnosed to teach him to talk and to control his urge to run literally into traffic or anywhere his little feet could carry him. I have talked at support meetings and to other mothers and fathers about what a blessing and miracle Spencer truly is and I have this anger and "I'll show you attitude" towards the very One that gave Spencer to me.  I do not have it in me or the emotion left to deal with this or do I want to.  This is so horrible and hypocritical of me. All the while I am telling others" it will get better and we have the purest kind of love from our kids and other parents really don't get to experience this with their typical kids".  I guess I just wondered if anybody else feels this way or has and what they did about it.  For my son to be so unself aware of himself he sure picks up on every emotion of mine even when I think I am not showing it or reacting to the emotion.  He can see right through me to my very soul.  Maybe that is why he hates going to Church soooo much and constantly wants to leave.  Makes me wonder.


                              Sincerely,  Spencers mom

p.s.  This library happens to be the same one I took my son to over Fall break and a guy in his 20's told me to control my kid ! I was then told he was talking to loud and I better do something about him!  My son was having a conversation,( in a moderately loud voice but he by no means was he yelling or screaming) with the librarians about what their names were and what was she doing and that his name was Spencer and so on.  The library ladies were having a pleasant time with him from what I saw.  What happened next has never, I mean never happened to me over the years with our Autism, so called public "experiences" One of the library ladies called that guy out and let him know who was in charge and he was never to talk that way to a customer again in their building!  I sweetly turned around and faced of with the guy and said  "  That won't be possible to do anything about my son and I would not anyway, you see my son is doing a great job today!  He has stayed in the building and is waiting for his books instead of spinning and jumping at the moment and I am quite proud of him".  I kindly informed him that my son has Autism and he might want to research on the internet to gain a better understanding on this.  I then raced out after my son because he was finished waiting and had books in hand.  After 5 years of living autism someone had my back for once I could hardly believe it.

[Jen]

Dear 'Spencer's Mom' (what a great person to be!)
I had so many emotions while reading your post- I'm not sure I can put them in to words just yet, but felt the intense need to answer you and at least let you know someone was here. We do not do 'the diet' so i don't have alot of knowledge there- but i know folks who do and will contact my friends to see if they can help. I am so glad the library lady spoke up for you and your son-it sounds like she handled the situation well- as did you!
As for feeling like a hypocrit, I wish I could send a big hug your way along with the wish that you would be compassionate with your self. Our kids can take alot out of us, not just physically, but emotionally and spiritually as well.  Eric often speaks of us as being 'obstacle removers' for our kids. That is, our job as parents is to remove any obstacles we can from our kids' paths- those we can't remove, we try and help them over or around, whatever it takes. I usually find that either I or someone involved in the situation needed to learn from my child's struggle. I know that sounds simplistic, and i know it doesn't make anything easier, but it is what has kept us going and so i share it here now. I have had many, what i would call 'sacred', experiences involving my children that i keep more to myself, due to the spectrum part of our lives. Many of them have flashed through my mind as i read your post. I wish I had a magic answer that made all the pain and struggles go away. Thank you for posting and for sharing what is in your heart. I wrote in another section that often just posting those feelings is a success story- I consider your post one of those times.
please come back soon.
Jen

[PattiS]

I too have had an experience with my nephew who has moderate/severe autisum and does not comunicate hardly at all with anyone. I took him and his younger brother to Walmart (the younger brother is fine) and I left to go get something I forgot. While I was gone a customer was trying to get around Chad and he had asked him quite a few times to move which of course he didn't acknowledge. His brother realizing that Chad wasn't moving and the other guy was getting really angry told Chad in his ear to move over toward him. The man became abusive and Jacob became afraid. I walked back as he was saying something about repect and I asked what the problem was "your kids have no manner and need to be taught a lesson". Jacob explained what happened and I turned to the man and said this child has autisum and it's not that he doesn't hear you he just can't respond, it wasn't on purpose. He called him a retard and left and I was so angry. Poor Chad was so agatated from the ordeal. Ignorence isn't bliss and it's uneducated people like that and your guy that make this world a tougher place for our angels. YOu're not alone in it hun. I understand the anger all too well, at all one thing and everything. I'm sending hugs your way too.