Monday, March 09, 2009

Dear Noah........Sunday was a stressful day for you......


We went to a birthday party for your cousin and aunt....a combined party as their birthdays are very close together....and we took along grandma C to grandma and grandpa L's house....as the rest of the family was also going to be there.

BUT....things were a bit too stressful for you and you were overloaded quite a few times.

This makes big get togethers almost not worth the end result anymore...especially if some family members purposefully try to set you off and then laugh about it thinking it is somehow "funny" or continue to grill you and me both afterward with a million questions ... "WHY does this bother you so much Noah ?"... when you don't know why some things truly bother you. The fact that it DOES should be enough and everyone should respect that and the purposeful crap should stop rather than continue with you lying in a fetal position on the sofa with your hands over your ears or you standing with your hands over your ears or having to run into another room almost screaming and crying to get someone to stop something that is bothering you..probably hurting your ears more than anything. Rather than RESPECT that and treat you like a human being......it continues with more laughing intermittently throughout the day. The only reason I did not just up and leave was because we also took grandma C with us and I did not want to do that with her there or stick her in the middle. BUT even she is not blind to what goes on.

For some reason people don't understand that some sounds or sights or smells or circumstances are just too much for you....they can physiologically be "painful" to you. Others think you are a spoiled brat and need to be spanked or told "no" and that will somehow magically FIX you and you will never act out again. Most would just prefer being in a more controlled "quiet" environment where you perhaps do not shriek suddenly because something upset you or because you cry again suddenly when something else has changed yet again in the setting to bother you and their fun day can be more relaxing and enjoyable.

They don't seem to understand that if there are going to be sudden changes in the circumstances during a family get together you need to be prepared for those. Just getting together with a lot of people for a birthday party can be overwhelming enough....ANY sudden changes and MULTIPLE sudden changes to that plan and that is like you being a puppet dangling from strings all attached to your emotional psyche ....it puts you through hell. You are HAPPY AND FINE one minute.....upset and crying the next.......happy again.......upset again minutes later......too many changes in your environment and circumstances and plans for the day.....a day I had already worked with you a week on to get you prepared for.......sends you into overload.

I ended up taking you to the park awhile yesterday to swing for awhile as that calms you down. We talked about the day and how you need to learn to handle sudden changes in your world better than you still do....though you have made tremendous progress from how you used to be.

But I have to be honest here. I know my some of my family reads this blog but I don't really care anymore if you get YOUR feelings hurt for a change or YOU become upset. Noah is not like Audrey. Noah will never be like Audrey. Noah is not the average standard little boy that you have all known in your life or expect him to be like....he is different. He requires special care and handling just to cope with living in our world. Everyone needs to respect that and do what you can to make things run more smoothly for all concerned at a get together rather than try to sabotage the day or send Noah into overload.

If the situations were turned around...and you knew your child had any special needs of any kind and someone came in and basically abused that information to the point of sending your child into overload and then laughed about it...I know you would be pissed off and not think it funny.

Noah was almost ready to vomit on the way home......he talked about how he felt some family members were "against him" or "on the other side" (as he perceives it in his mind)he said "almost like they are committing a crime" and I just about cried in the car when he said that.

We are talking about a 10-year-old boy with autism......sensory integration disorder....generalized anxiety disorder....and he does not need to be made to feel like that. We have enough issues in our everyday world and life than to have to deal with more crap like that especially from family?

Give me a break. One reason I moved back to Ohio was to be closer to family. For the "support" and social outings for Noah.....for some "understanding." I don't call what happened the last few times I have been around the entire family with Noah support or understanding. AND while Noah has issues...he is not stupid or blind. He is totally aware of how he is treated or not treated in comparison with others in the same room. He may not be able to express how those situations make him feel in the same terms as we would describe them...but they affect him regardless.

And for anyone out there in my blogger reading world who would like to read more about "autism" and really educate themselves on autism and Asperger's syndrome and the characteristics....coping mechanisms.....etc....this next link is a very worthwhile read if you actually take the time to read it. It is a guide actually drawn up to help with teachers dealing with autistic/Asperger's children in their classroom....BUT.......it provides huge education about the autistic/Asperger's child (for lack of better wording)..and is helpful for just the everyday average person who might happen to know someone with autism.....which would hopefully help you to interact and co-exist in the same room with them.

LIFE JOURNEY THROUGH AUTISM

AND try not to be afraid to actually talk to someone with autism.....or a child with autism. Noah would love for someone to even FAKE interest in something he likes or is interested in...to ask him questions about it....to act like they want to do something with him or be with him.

Now I'm logging off so I can deal with this continuing migraine that I was blessed with yesterday that is still hanging on today. I am also in the same pool as with most autistic moms and dads......who will also continue to pray that we remain healthy and strong and live "forever"...so we will always be here for our kids...cause otherwise.....who do we know out there that would really take care of our kids? Would anyone even want to (minus the biological parents)? AND some of those don't really want the "burden."

See....it's just easier for us to continue on as usual.....teaching our kids how to do it all themselves so hopefully one day they CAN totally make it on their own and be successful in anything they choose to do...so they won't have to depend on anyone else for anything.

An ideal world.....or circumstance......a dream? I don't even care anymore.....I just need to do the best I can for you Noah.....so you have the same chance as anyone else to make it in the world. I don't consider you a bother or a burden. You are a blessing.

I love you lots my little man!

Mommy
XOXOX

9 comments:

kristi said...

Melinda, I can so relate. On my son's birthday, my sister got upset that he was crying so she threatened to take away his presents. Then a meltdown ensued. I wanted to kick her ass, I really did!!!!

I actually got so upset that I took TC in the other room and I cried as he cried. (in my own home, too, how screwed up was that?)

Anonymous said...

seems like you should not have to explain to people what it is all about. poor guy-but you know what-he has you thank goodness! that is all he needs-everything and everyone else is just a bonus.

shame on anyone who acts like that towards him.

"there but for the grace of God go I".

remind them of that.

Michelle S. said...

I applaud you for putting this out there for you family to read. Shame on them and hurray to you for being such a great mother to Noah.

Michelle S. said...

I applaud you for putting this out there for you family to read. Shame on them and hurray to you for being such a great mother to Noah.

Betsy said...

Oh Melinda! I'm so sorry. I can relate, too. We call all those questions from family "The Interrogation". One Christmas we arrived at family's house only to have them say that the triplets could go down in the basement and watch a video while the rest of us and the other children opened presents! My boys loved presents and there were some there for them! But nobody wanted to be bothered with the inconvenience of having them around. I've cried like Kristi here after leaving family gatherings. So sad. You really do start to feel alone and it shouldn't be that way. Where's the love? Sigh.

Osh said...

Preach it sister.

((hugs))

Tanya @ Teenautism said...

Sorry for what you've gone through. My family sometimes doesn't understand, but they wouldn't deliberately try to upset Nigel. That's terrible that some of your relatives are like that. It's bad enough to deal with that from strangers!

Melissa H said...

Surfed through from Kristi, after she wrote her response to your post on her blog.

Know that you are NOT alone. The entire paragraph that starts "For some reason..." could have been written by me.
I am actually not speaking to any of my family, after the final straw occurred on Thanksgiving. Both my brother and father left the table in a huff because Conor, who has Asperger's and is bipolar (and also happens to be 6), was having a gagging reflex and was very upset about the thought of trying a potato. Prior to that, he has been ostracized for the fact that he wants to play in a rigid way, the fact that he has fine motor issues and has trouble with a fork, the fact that certain things overstimulate him and he doesn't just need a spanking. And, my father is the worst: he has actually egged Conor's meltdowns on and made things worse.

I don't have any solace for you other than letting you know that I know the pain in your heart and mine is breaking all over again for you. I hate to know that I'm not the only one who goes through this discrimination. Would they treat our children the same way if they were in a wheelchair? Would they mock the fact that our children couldn't get through the doorway? Or couldn't reach a toy that fell to the ground?

Our society has a long way to grow.

Melissa H said...

Oh, my blog:

http://thingsicantsayoutloud.vox.com

If interested, add me to your neighborhood and then I'll "friend" you.