Wednesday, 20 April 2011

~No label~

Again I thank my dear friend for letting my guest on here. Although it has been a daily thing this week, It will start to become more casual or when something really bugs me. Again I'm not here to upset people but just get people talking. There is a lot of people that are too shy/scared etc to say what's on their minds, or ask the questions that I am bringing up.

As my previous blog I stated, I would return to the topic of labels. Up until Nik’s “label” I couldn’t say I knew anyone with Autism, let alone that I knew someone with PDD-NOS. And like many others when I heard the word Autism, I thought Extreme Makeover. I laughed when the doctor said it. I asked him if we were talking about the same child. My son doesn’t rock, doesn’t flap his hands. Hell if you look at him, the only thing you could say is “WHOA, he’s a big boy”. Then I started reading. Man oh man have I read. It’s almost become a bad habit. A night, with nothing interesting on TV, I head over to old Bertha and start reading. Everything and anything really. Then I started reading that my son is Autistic.

I guess I should give a bit of a back story. Nikolas was the perfect baby. Other than the late delivery, perfect pregnancy, no midnight feedings, never cried. Such a happy, healthy baby. Then he turned 1. It started with a couple allergies, asthma, and severe skin problems. Then came age 2. More allergies, worse asthma and a “speech delay”? WTH are you talking about? He’s two, how many words does a 2 year old need to know? Well, apparently more than 5. Then age 3 came. Our first appt with CDC  (a place I had never even heard of). “Well miss Thede, he has a severe speech delay, and global developmental delays. We also aren’t able to rule out a form of autism at this point, so come back in 6 months and start therapy ASAP”. Umm I’m sorry, what just happened?  We went to the doctor with concerns that he couldn’t feel pain and now he has all these “LABELS”?  So I left. Angry, scared, confused and just plain lost. 6 months went by, and we returned. All the labels stuck and now they wanted more people involved. Not to mention at this time his asthma had gone insane and my newborn baby was fighting a blood infection in the hospital. What a life at the ripe age of 22.

At age 4, therapy wasn’t helping, everyone was hitting their heads lost at what to do. One person said, well if only he had a diagnoses, everything would change. Huhh? I thought we already had that? Now you want more labels?  So back for yet another assessment. This one took over a year, and landed us at MATC. Within the first 20 minutes of being terrified, the AMAZING doctor looked at me and said, "Yup he’s autistic."  Huhh? Are you crazy? Again, this is the time I honestly started laughing. What was he talking about. He has all these other labels and now a new one. So we present the new information to the workers, and they all agree. This was something we were all expecting, “this is good news, we now have a clear diagnosis and things will start rolling now”. Summer came, we moved, took the summer off to soak it in. School started. With all his medical diagnoses and all the labels, I have my head held high and so happy cause “we’re labelled, we’re gonna finally get help”. Nope. Now we’re not labelled right. Apparently although he is autistic, according to a school worker “ he’s just not autistic enough” Come again? Years of assessments and waiting, and all these LABELS added and now he’s not autistic enough? This has been the story since September 2010.

Now depending which family member of mine you talk to, some say more kids are effected now than before. Other’s say there’s too many labels. Maybe they're both right? Are more kids being effected? What has changed to make our kids a lot sicker now? Are they sick? Is the bar just set to high? I don’t know these answers. What I do know is that it shouldn’t matter. If a person loses both their legs, you sympathize. But if they only lose one, do we tell them, “sorry you still have a good one, start hopping?” No. Why does it matter what degree of disability a child has? I have always thought, if a person/child/dog/ cat whatever needs help, you help them. No questions asked. Today that is not the case. Those that need help, aren’t getting it, and the ones that don’t need help are clueless to the situation.

I admit I haven’t been the perfect person. I caused my shit, and trust me I’m laying in it. My child didn’t ask to be different. I think it’s time we get back to basics and stop caring about the stuff that doesn’t matter and start focusing on the important stuff. Our children DO matter. They are our future. Just because society looks at labels and difference we don’t have to. My son doesn’t see the difference between him and another kid. He doesn’t see the difference between an adult and a child. To him we are all equal. Why is that an almost 6 year old “labelled” child can see this, but well educated, over paid adults cannot? I have to admit I’m guilty of wishing I didn’t have to list all his “labels”. With him getting ready for a new school, part of me doesn’t want to tell them all his labels, weaknesses. I want to go into a meeting and just smile for all his strengths. Luckily my child wants to learn. He has dreams and goals. I know “normal” children that don’t even have that. My son is nice to people because he wants to be, and he knows it’s not nice to be mean just because someone is different. He’s passionate about music and numbers, and trying new adventures. Why have meetings about everything he can’t do, and all the “bad/wrong” things about him. Why not change some of the labels? Instead of saying, Nikolas is autistic, delayed, large, allergic switch it up to caring, loving, funny, brave, accepting? At the end of the day we all have labels. We all use labels. She’s “fat”, he’s “skinny”. You're “ugly”, they’re “perfect”.

So this is my take on labels, I’m also signing off with my own label,

Wendy-passionate, mother, daughter, sister, friend, mommy tummy:D

1 comment:

  1. Ugh! Boy oh boy, I can totally relate to what you're saying Wendy!!! I remember the mass confusion with all of Dayton's diagnoses. At first, they were observing him for autism, then decided it wasn't autism, but global delays. Then they decided that it was ADHD, then ODD, then OCD, his languages was delayed and play skills delayed and he preferred to play by himself... For 4 years I screamed AUTISM!!! But no one would listen to me. Just like you, I thought once I got the autism diagnosis, life would get better as we would get services. The sad reality is that this is simply not the case. I remember when the doctor (how interesting that our kids share the same psychiatrist) said "high functioning autism," I cried and hugged him, feeling almost vindicated that I was right and "they" were wrong. "Finally!" I thought. "Finally, we're gonna get us the help that we need!!!" Only to have the written diagnosis of PDD-NOS and Dayton's school saying "well, that's not autism, even the doctor won't say it's autism!" Are you serious?! (profanities running through my head...) I had to bring the school to the psychiatrist to have him explain to them how PDD-NOS falls under the autism spectrum!!! Ugh!!! And Dayton's still falling through the cracks because he doesn't "look" autistic!!! AAAAAAAHHHHHHHHHH!!!

    Awesome post Wendy, thanks for sharing!!!