Autism As A Whole

Yesterday, I probably made myself
look like a complete fool!
Yesterday I had an amazing day with my kids.
Yesterday I laughed when my daughter fell in mud
instead of thinking about the huge mess.
Yesterday, I tried so hard to ignore
all the struggles they endure.
Yesterday, I focused on all
the wonderful moments with my kids.
Yesterday, I struggled not to cry
as I bought a pack of Pull ups for my son.
and yet I still feel as if I may have failed....

Chucky Cheese

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Buddy
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Chipmunk

Charles has a clinical diagnosis of Mitochondrial Myopathy. This means he fits all of the symptoms and his bloodwork has also come back with abnormalities. More testing and trying to narrow things down. His behaviors are getting worse and I am unsure whether this is because of him being so tired or due to other issues. I guess time will tell. He is still on the waiting list for Intensive therapy. It seems to be taking forever. 

Yesterday his service coordinator called to tell me how it was all going and stated that he is a high priority case. Great news for us because that means they will be looking at his file soon. (Hopefully befor mommy loses her mind.) I met his new therapists and teachers and they all seem great! I am excited to see what he accomplishes this year. 

Early next week he goes to be casted for his braces. He will have articulated AFO's. We recieved his stroller which will really come in handy. Just happy that some things seem to be falling into place. It has been another really long and trying year. I sure hope it calms down really soon. 

*Disclaimer:*

This post is not in any way 
to offend anyone. Please read it
fully before getting upset!

This post came to exist as I was chatting with another special needs mom. We were talking about my "new" approaches to the doctors and I said, I sound like a Bitch. Somehow that has lead to this post.


As a special needs mom, I encounter many battles. Battles with my children, doctors, teachers, and even family members. We fight for every service our children need and every right they deserve. We fight for respect and acceptance. All this fighting has made me a Bitch. I have capitalize it cause it is my title. Don't call me Ms. Long, call me Ms. Bitch. I take no offense and I pride myself with that title. I know I am not the only mom who has become a bitch by default. It isn't even just because of the struggles, I now bitch about everything.

For years I bitched that my son wouldn't speak but now I bitch that he won't shut up. Seriously, it really does get annoying when a child continually repeats them selves over and over and over again. It isn't just the repeating because my son, when he talks, takes FOREVER to finish a sentence. It takes so long I describe it as constipation of the mouth! I know many parents would do anything to hear their child talk and most of the time I love hearing it, but sometimes it just gets on my nerves. I am a bitch!! My boys do NOT have volume control either so if they are standing right next to you they still feel the need to shout. Buddy talks loud and non-stop, sometimes so fast you can't understand him. It must sound as if I am being ungrateful but I am not. I am just living up to my title!

Many people say that we are our children's advocate... This is true, but we have to be a bitch to get it done. We can't sit in a room full of highly paid professionals who dont want to give our children what they need and be sweet and kind. We have to fight for what we know is right. When papers get lost or insurance claims denied, we have to fight for justice. All of this fighting becomes a second nature. It isnt just for medical and school stuff, but for ignorance too. I have learned to know when I can be a bitch because a grown adult never learned acceptance.

Having to be a Bitch so often has caused me some issues though. I find myself bitching about everything now. I actually have to monitor myself and calm myself down now. I have bitched because the milk was put in the wrong fridge. The funny thing is there isn't a pre-determined fridge for anything as long as its in the fridge. LOL... Well, I hope I haven't offended anyone and if you ever run into a woman with the front of her hair graying, a 6 yr old screaming and kicking walking with three other children, who looks really bitchy, you have probably met me, or another special needs mom. So please, think about what may have made her so bitchy. She probably has a good reason, I know I do.

Teaming up with 5 minutes for special needs with their Magic Marker Monday!I would love to see your little ones artwork as well.Just click the button and link up!!!

This is my dad wrestling with a Vietnamese child

Posing in a tree

Medics with a child

This is my dad asleep with a baby. I don't think I ever met this child but I now know that he had other children aside from us.

Enjoy these interesting shots I took. 

I enjoy participating in this blog hop because it helps me get things off my mind. This week, I want to give myself a Throat Punch Thursday!! Weird right?? Let me explain.. When I joined a support group for special needs parents they read an essay that was very touching. It is called Welcome To Holland by Emily Perl Kingsley. It was a great read and it truly describes how I as a mom feel.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley

The only thing is I haven't come to see the beautiful flowers and windmills. I am not enjoying Holland and it is really hard to talk to the other parents that also live in Holland. Many of them have been living this life for a much longer time and seem so adapted. I feel as if I need to bite my tongue so I don't offend anyone. But.. Haven't they at some point felt similar feelings? Am I being ridiculous? I love my son and I will accept him for who he is but I can't seem to accept that he is deteriorating so quick. I can't accept the equipment that is now in place.
When Chucky Cheese was diagnosed with Autism, I had already accepted him for who he was and it didn't seem to affect me in a huge way. I think it is because I struggled for so long to get the doctors to listen that when they finally did I was relieved. At least there was an answer, it wasn't my parenting skills. I was able to cope and move forward. This time it isn't easy, not even a little bit.

C.C.'s motor skills have regressed drastically. It is heartbreaking to watch all the skills that he tried so much harder to accomplish disappear. He is needing adaptive furniture and strollers, and now he needs AFO's. So you can imagine how stressed an hurt I was when I read this letter. I changed his name to his nickname for privacy issues.

Dear Sirs,
Chucky Cheese is received physical therapy services at Rosendale Elementary School twice per week for 30 minute sessions. Since starting school in September of 2011 he has become noticeably more unsteady with his gait, falling several times and becoming progressively weaker with his routines in the therapy room.  This has been communicated several times to his mother.  I have spoken with his doctor about the lack of progress and the need to add more equipment in his room to accommodate safety concerns. He no longer can sit on the school benches in the lunchroom due to falling backwards; he now is in an adaptive seat with a footrest and a seatbelt.  He has fallen when trying reach for a dropped item from the chair.  He is unable to sit on the carpet in the classroom without support and now needs a Rifton adaptive seat for the carpet and in the classroom.  He is losing range of motion in his legs, his movements are clumsy and he is unable to do most of his exercises without moderate assist.

His mother is presently taking him for testing and he was seen by a Physiatrist in Albany who will be prescribing bilateral ankle foot orthotics for him to ambulate with. He does not tolerate ambulating long distances and often complains of joint pain, weakness and shortness of breath. It is highly recommended that a stroller be used to prevent overuse and damage of the joints when needing to go for extended outings.   He is unable to keep up with his peers at this time and will be having therapy increased to three times per week for the upcoming year.   If you need any more information please do not hesitate to call me at the school.

Thank you for time and effort,
Teresa M. RPT 

The reason this is a Throat Punch Thursday towards myself is because I cannot seem to get past the fact that my son is really physically disabled. There is nothing wrong with that but people are going to look at him now even more than before. Maybe I am willing to take the looks of disgust toward my parenting over the look of pity for my son. I think I can handle the ignorance of others above the pity and questioning looks of bystanders. I just don't want him to look "different" along with acting different.

I was talking to another parent when I was looking into an adaptive chair for C.C. I had told her that,"I didn't want to get him something that looked to "special needsy"." I look back on these words and while they may sound offensive it definitely wasn't intended to offend. What is my problem? I should be able to get my son whatever he needs without thinking about what others will think. I need a good kick to knock me out of this difficult time so I can get back up to fighting for my son and working to make his life as comfortable and enjoyable as it can be.

I guess it doesn't matter if he has an adaptive bike, braces, strollers, special chairs or whatever. If it helps him then it makes it easier for him. It comes down to trying to protect and shield him from ignorance and the world. It can be a cruel place out there but I need to accept the things I cannot change and work to make it as positive of an experience as I can for him. He is always going to have to deal with the issues of the world and I guess my job is to give him the confidence to be able to deal with it. I need to instill strength, courage and acceptance. I have to help him be comfortable in his own skin and whatever equipment he needs. The more comfortable and confident he is, the less he will care about what others think. I can do this and I will.