Autistic kids do NOT deserve to be generalized to fit societies perception

After Kalea got a dx of Autism in September from her Dr. we went about waiting to get her into the child development center which could take a year or so.  In late December I got a call and was asked if we wanted to be apart of a pilot project called RITA.  So we agreed.  So we went to our first appointment and they had her play with a toy phone that talks – her first reaction is oh it’s like when Grandma calls me – so she says “huwoh” and the lady would put her hands over the phone so Kalea couldn’t use it and Kalea would move her hands she didn’t like the lady touching her hands but the lady had a firm grip over her hands on the toy phone, then she would hold it out to Kalea then pull it back and take it away from Kalea (she is used to this Kiana does this often) so she didn’t really respond other than look confused as to why an adult was doing this to her.  Then the lady pretended to cry and so Kalea turned away and hid her face in my lap she didn’t really like that.

So that was about the just of it – other than me leaving the room to see what would happen – well Kalea has bad anxiety about me leaving – even if she is in the car with Kiana and Kevin while I run into the store quickly – she freaks out.

So based off that they said well she looked up when we pointed up – well duh she saw you put a toy up there earlier so she was probably thinking oh a toy…and they had me call her name – she was standing half an arms length from me doing nothing in particular – so she turned to me.  Well duh I mean I am right there she isn’t engrossed in anything in particular just standing there.

So we go back for our follow up – and I got ambushed and railroaded…it went down a little something like this:

As for today’s events I only went through this process because I had a dx and her Dr. was more than confident in it – although he was torn between ADHD and Autism he said likely at a later date we could give her ADHD confidently but being so young it’s not going to be anything helpful she is way to young for meds. It’s hard when you and others that are in your home and around your kiddo see one thing but someone else comes along and says something totally different.

Without any kind of Dx there just isn’t anything we can do – he proposed me travel into the CDC 5 days a week for a playgroup kind of thing at 9:30 but Kiana is home by 11:30 and I would not make it on the bus or the train and Kevin has school and it’s an hour and 20 by bus/train back to my place I would never make it. My life is just not cut and dried and that guy just kept over talking and almost forcing his opinion on me and I felt very frustrated and I just had such a hard time getting the nerve to speak up and defend my position and her Dr.s but it didn’t help. He was like “I am telling you for a fact she is NOT on the spectrum and she does NOT have ADHD nor will she ever) uh yeah ok just cram it dude and stop being such an arse. I told him I had Aspergers and about Kevin’s PDD-NOS and Cam’s dx’s – he wants to look into ALL of our dx’s because he feels we have none of that – SERIOUSLY what the fark…I brought in all my papers and everything I had on everyone and he just shrugged.

I said you can’t shove all kids on the spectrum into a box, they don’t think inside of boxes, they are bright, vibrant, smart, funny, amazing little people that you cannot say in a generalized term they do or do not do these things – if that is how this DSM rolls I want nothing to do with it, I also found out he is the husband of the nurse we see at Endocrine at the hospital – how freaking fantastic is that – seriously it’s no wonder – they are both very much like that. When I asked about Genetic testing for Kalea she is the one that told me there is not point it wont change that she has Diabetes…oy seriously I got to shake my head at people. I fight the good fight but lost…which means so will Kalea.

Kalea scored high in to many area’s but low in others so they are overturning her Dx we got in September. It used to be PDD-NOS but that’s gone now so now she is outta luck for services or supports.

Apparently they like to also generalize ALL Autistic kids saying “well kids with Autism don’t do this” So then he leaves the room and Kiana does all the things he just said kids with Autism don’t do. So they want to review Kiana’s dx now to. Holy fark she had that before the new DSM they can kiss my arse there.

She has come a long ways in a year and a half because I refused to sit back and do nothing. I worked hard with her and Kalea to, but she lost most of the words she had. Oh and she’s interested in exploring things as kids with Autism aren’t…umm w/e that’s such a generalized statement for a spectrum disorder.

So some of the things that REALLY set me off were things like “Kalea needs to be around kids that are not Autistic” his tone was more or less inflicting that that isn’t a good thing for Kalea – like there is a problem with that.  Another one “Kids with Autism don’t point or have any inclination to explore things, they are not curious like Kalea is.”  and “Kids with Autism don’t have emotional responses to things and show no interest in things like Kalea does.”  I wanted to reach across the table and SMACK him.  For a Professional he was NOT anything like it, such generalized statements and making these kids out to be mindless head cases that are doomed.

If we don’t advocate for our kids no one else will. Teachers look down on them, treat them like they are not smart, society thinks they are damaged and we need to cure them or keep them at home, people think that our kids are not capable of accomplishing great things…Dr.s treat them like mental cases and try to squeeze them into generalized compartments, getting support and services is often much like navigating an obstacle course you never signed up to navigate, we as a community need to stand up and show people these kids are NOT stupid, they are amazing, smart, funny, curious and full of wonder. Some of the worlds greatest minds have been and are Autistic – so their misconceived ideals need to be changed…we need to show them the truth. I want to work with anyone that has a project going already (photo’s/video’s etc) and get more people on board so come April we are ready to make our stand and show the world in hopes it goes viral – that these kids/teens and adults are freaking awesome.

When I found out I was an Aspie it finally clicked – that missing part of my life was found. But not before a lot of personal and emotional damage was done because I was “weird” or “stupid” because I couldn’t figure out things like other kids, I was beaten physically, I was yelled at, called dumb, I would never amount to anything…not one teacher ever believed I had potential…I didn’t give up – nor should anyone…we need to get the word out that we don’t belong in some neat tidy little box on a form – we are so much more than that…please join me…help me fight stigma and help fight for our kids and their future…after dealing with such blatant ignorance yesterday I am tired of the preconceived notions and closed minds of professionals and the general public.

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Music soothes the soul

For me music is an escape.  Growing up the one thing I remember the most is listening to music anyway I could while writing.  Bet ya didn’t know I am a published author and poet did ya 🙂  I once got 3rd place in all of Canada for a poem I wrote I was in grade 12 and the put it over the PA system and it was the first time people actually stopped and were nice to me and said hey that’s awesome congrats.  I was never one to enjoy the spotlight to much but hey it did feel good to get recognition.

As a kid growing up there was this old desk that was my Grandmas (Dad’s side) that we inherited when she passed away.  I remember spending hours listening to my walkman (yes I am old and they were a new thing when I got one) I also remember having to flip the tape over to listen to the other side and rewinding them and fast forwarding through songs I didn’t like as much to get to the ones I did.  Indeed there I would sit writing poems, writing a book about my life and the struggles/triumphs.

Music was an escape for me from the world.  It was a tough situation growing up, I never quite fit in, I didn’t know how to fit in except with the kids that were all misfits to.  I was bullied that is no lie – I was a kid that was beat up, broken down and stepped on.  But no matter what I could always turn to music and forget my troubles for awhile.

Our life with Diabetes

You know looking back I think we have managed ok with things here. My Mom took the training with me when it came to Cam and his Diabetes – my Dad even was on the up and up when it came to what he had to do…my son’s Daycare provider was to, his school (teacher/aide and the kids in his class)…I never really stressed about him in the hands of anyone else or even myself. We had some lows, we have had highs where he was in coma (his own undoing not mine) but one thing I learned is that ANYONE that is going to have your kid that has medical issues they NEED to do the training. You can go over it with them, highs, lows, what to do in each case, have a glucagon kit with you at all times and snacks/juice etc.

Diabetes DOES NOT have to rule your life or theirs. You cannot stress over every little thing because it doesn’t do them any good or you. You can’t live in a bubble – we have done without any real support other than the kids care team at Childrens. I have no family near me or anything. BUT don’t let it rule your life or theirs, in time resentment grows, anger, defiance and worst of all Diabetes burnout for everyone.

Let them eat, let them play, let them be kids – many pro athletes are Diabetic, people have climbed Everest with Diabetes, done triathlons – it doesn’t have to be yours or their whole life. It makes these things more tricky but living in fear of them having extra snacks or not playing enough to burn things off – a rough night – it happens. It is always going to happen from time to time. I have set an alarm so I check Kalea at 3am and when I get up at 7am…we were using Lantus which IMO is better there are NO peaks and valleys it runs consistent in the background and is MUCH MORE predictable so for us it was a wise choice. Now with her pump it is easier to turn it down or up depending on what she needs but as you saw from my photo last night – it CAN fail (it is being replaced) so again have a plan in place.

Your kiddo can still go to birthday’s, have cake, have ice cream, still do sleep overs at family members houses – the world DOES NOT have to stop because your kiddo has Diabetes. Don’t even think that it does…write out instructions and put them in a place like the fridge at the said relatives house, then go over things with them – give them a book on carbs (most packages have the carbs on there as it is) it might be a lot of work but even with a pump or an alert dog it can’t count carbs for you – it can’t give insulin for you – it can tell you if there is a low or a high but it can’t treat it. They have to be prepared.

Never ever let anything like Diabetes, Autism or anything like that stop you from letting your kiddo live a full and happy life. It’s a new life – it’s a different one, more challenge but don’t let it grip you in fear and live in a bubble…take that road trip to see family, go to that movie with the kiddo(s), go enjoy that ice cream cone on a hot Summer day, take that walk around the park, let them go to that sleep over with family…just have everything you need and let go of the fear and embrace things…say I got this I can do this. The more confidence you display the more they pick up on it and the less scared and worried they will be about it and it will make thing much better as time goes on – they will want to do a good job managing it and working with everyone to make it happen. If you live in constant fear you are only ensuring they are going to live in constant fear about it. Don’t panic when something is off – just take a deep breath and say ok I got this.

Remember to – Pasta’s and breads break down slower than refined sugars so you may need to give a correction bolus for Pizza’s and Pasta’s – but don’t fret it is better to split dose those things and give half at the beginning and half about an hour later. But remember if anyone needs to talk – I am here – I have actually had to save Kevin’s life twice – he was .08 barely on the meter – seizing and I was worried – BUT I rolled him to his side made sure his airway was clear and I was on the phone with 911 the entire time and I got through it…Cam has had some super highs and he was in coma for 24hrs (Mom here got sick so he stopped doing as he was told with his blood sugars) and it was scary as hell – I cried and I got over it and I was there with him and we spent a few days in the PICU but we have NOT been back since December 2012 over a year now! Even through all Kalea’s lows with being sick only ONE run to the ER – and we were doing everything right so we got to go…it’s hard – no one said it would be easy and if they did they are full of something that isn’t nice. But nothing rewarding ever comes easy! Just remember that – the greatest rewards and victories in life don’t come easy!pizap.com10.77162631694227461383768225155