In the Doctor’s office it appeared as though I had no control when actually if I were to stop everything Michael was doing he would simply become frustrated and more than likely have a meltdown, why wouldn’t he?, it is his world, it is the way he knows how to function. Although it may appear that he is not being taught, he is actually learning more than the average person in that one visit. He has to remember to be quiet which he was with the exception of thumping his feet, he loves rhythm! , he remembers to use sanitary cream, take off his shoes etc. Where a “normal” functioning child learns quickly to brush their teeth, Michael has to learn through broken down steps that have to be repeated day after day.
- Eg. Turn on water
- take brush
- take toothpaste
- put toothpaste on brush
- put it in mouth
- brush the front, back and sides. (3 prompts)
- take the glass,
- fill it with water,
- put water in mouth,
- spit water out.
What people don’t realize is that I am actually doing them a favor by not stopping some of his actions. When we eventually seen the doctor, Michael began thumping again, he has to be reminded constantly, the doctor spoke before I had a chance, he was very loud and said” HEY THERE BOY, DON”T DO THAT , DON”T DO THAT.. Michael just looked at him with a blank expression and I could see he was about to cry so I walked over to comfort him and told him to not thump his feet in a gentle way , while calming him I thought maybe the doctor could learn a lesson how to talk, to any child! The doctor didn’t realize that he just sent Michael into withdrawal then of course as a result Michael starts making a sound with his mouth, The doctor looked at him strange and that’s when I lost it, I sternly said Michael is Autistic!, his reply was “ that’s ok”, as if to say So?
Asking Michael to sit there for an hour and a half is like asking an old lady to do a cartwheel; personally I think children with Autism should be high on the priority list to get in, there should be a rule depending of the severity of people’s ailments that Autistic children be allowed to get in within a half hour to forty five minutes at the most. It would be fair to him, to others there and to me. I was completely exhausted when I left and Michael was off due to new environment and stimulation.
I like to share something Michael did that was sweet but depending who the other person is, he could have received a bad reaction, and luckily in this case he received a smile. An older lady walked out of the office with a cane as I held Michael’s hand standing at the reception desk. Michael let go off my hand and walked over to her and wrapped his hands around her waist and hugged her. She was a short woman so Michael’s head was level with her breast, the hug wasn’t enough so he kissed her right between the breast, looked up at her and said “I love you”. Hahaha, Michael would have never approached her if she weren’t already smiling, he knew she was happy and he loves to be happy!
So to make my life easier I want you all to know you can ask me any questions you like about Michael and about Autism, that way, I will feel that people care and understand , I just might leave the house more often.This is the reason I jumped to accepting sharing my story at the Hospital in Souris on May 19th at 1:30 pm, you are all welcome to come.
Thanks for sharing this Naomi. Sometimes people just don't know what to say or what to ask. And even though we hear quite a bit about autism these days, because it is a spectrum disorder, each person has their own patterns and behaviours. Through your blog and by coming out and talking about it you will raise awareness and help people understand. You are doing a good job. I agree that there should be more sensitivity in the doctors office. Maybe we can help you advocate for that. Looking forward to the 19th.
ReplyDeleteKelly here [Don't know why it comes up Tony]
ReplyDeleteSometimes it is harder to deal with others than it is the behaviours. Like the time I took my son to spend his Christmas money at Walmart and he started to have a meltdown after not being able to afford a certain item. Strangers were swearing at him to shut the F@#k up, and telling me to get him the hell out of the store. Within a couple of minutes I had him calm again but I was well past angry and in fact swore back at a few individuals while 3 Walmart staff just stood there and watched only to step in when I said maybe I should take this autistic child over to Zellers to spend his money where we might be a little more welcome. Or the day in church when he started to howl like a wolf and most laughed but a few comments were made about why would anyone take an unruly child into church to disturb everyone. Some people think I am being over protective, but I find it a lot easier to prepare people when possible that he may do something unexpected, and we tend to carry a distraction bag including his DS, a snack, his maze book, etc. Not always the answer but often buys us the couple of minutes needed in certain situations like waiting in a restaurant or long drives. Some people make a hard enough situation even harder. They are the ones that need the education.
Thank you Anne for your comment, I agree that doing this blog is certainly getting it out there, only three months ago did I open up to share with Facebook about Michael.. that was a big step in itself considering I had stayed to myself for several reasons. I am facing my fear and by doing this blog it has strengthened me in ways I would have never expected. I feel I am healing and is more open to getting out there, I feel speaking on the 19th will also aid my fears, I am facing my fears straight on and honestly I don't know where the strength to do this came from. I guess it maybe somewhat desperate to be who I once was, outgoing. I have gone to far within myself and did it subtlely in time to where one day I looked and said " What am I doing?" The speech I will make terrifies me but I will do it no matter how scared I get, I know I need to do it , all I have to do is focus on Michael's needs and all parents that have autistic chilren's needs to motivate me. Every night before I go to bed I think about all the parents that have it harder than what I do, I pray for them and my heart really goes out to those who don't have the support or are to withing themselves to reach out. I really want to be someone they look up to and if I continue to come out of my shell, I will have an inspiring story so I need prayer, some days I feel I am not strong enough and other days I want to take on the world , lol You know what I mean. I am driven and I feel I have found my purpose in life which is to help others, yet I have to wake up to the way I am living right now because it is not doing Michael or me any good, I need to get out. You are such a great support Anne, I thank god for you.
ReplyDeleteKelly I remember when this happened to you and I remember the stress you were under for days after. People are so selfish to make such comments then leave the store never to think about it again, but if someone said something to their child even when they don't have a condition, they would also turn into mama or papa bear, it is natural for us to get hurt espeically when they are also hurting the ones you love most. I really feel for you in this situation. I was thinking today about something, what do you think about our children wearing a bracelet with Autism on it. I mean we don't want a pity party but if it were noticable maybe we wouldn't feel so alone out there, maybe people will smile instead of thinking we are such bad parents. I know some people out there think I am a push over with Michael but what they don't know is that I know that Michael doesn't understand and I know if I were to say anything instead of telling him right there, he would become arguementative because he is saying something he learned but just didn't get what it meant so I need to do this job at home , not in a line up at the store.
ReplyDeleteYou are doing an awesome job with Ray Kelly, I am beyound proud of you and noone knows the trouble you have, the sacrifices you made nor the challenges that are presented every day. We could talk and explain our life away but you know that only until they experience it do they really get it. So that is why it is important for us to stick together because I truly understand you and I don't know anyone besides Troy that understands me like you.. we need to add people to our lives that have to face the same challenges everyday , that is why I feel down the road that I will do something with having a group for Kings County to get us all together with our children , bowling , swimming ,what ever!! We all need this , we can't afford to be going to Charlottetown or summerside for these events! What do you think about both of the ideas in this comment... let me know!
Also Anne I would like it if you were an advocate for me because I am seriously wanting to present this , but I have to learn through whom I can do it and how to go about it.. maybe you can help me there as well! You are awesome.
ReplyDeleteI also live in "no man's land" but in Ont. We have 2 children, either end of the spectrum. We don't hide them at all. We've tossed them in the village and town to the N's faces and guess what.. people can deal with them or not. NOT, that I haven't had to deal with those that like to be ignorant... but in 10.5yrs I've acquired spine and I'm waiting to rub it in their faces that with little boy in spec ed next year their school will lose one full-time EA... "Those kids take up too much time with the Teacher, my kid deserves the support"... Well, with him in town, the EA is GONE!!!
ReplyDeleteNOW.... at the same time they appreciate that we deal with issues that arise. Just b/c they are autistic doesn't mean they get to throw a temper tantrum in the middle of the store... Like any other child, we leave and they lose out. I expect them to wait patiently in line at the store, the bank or for the waiter in the restaurant. Little boys' dental appt - new dentist - last month was nearly 2hrs late by the time we were finished... And he waited. I brought a few toys and a book and we managed. No meltdown and I got what I wanted - dental surgery. The same surgery I'd been pushing for, for a year with the old one.
I have discovered that simply by expecting appropriate behaviour in public places, most people are willing to help out when negative situations occur. Also, they will make allowances where other's with normal children may not... My eldest (10 - NLD) likes to check out the groceries... the village store lets him. They've taken the time to teach him, and help him with it. Make for a pleasurable trip to the store instead of a battle. In exchange, I buy most of my groceries there.
Negative behaviour does not include little boys (8), flapping and vocal noises... autistic behaviours that cannot be stopped.
I have written the Fed's re: funding ABA (against) a year ago... 23pgs later... When we changed Ped's I wrote and epic about the boys. He, Comm Living (our FSW), our child psych all got copies of the doc to the Fed's. I have made a point of knowing the Ont Ed Act's rules and programs and to expect services to be implemented and used. I know were to get funding and support. I have been working since Dec to move little boy out of his integrated classroom.. finally hit the wall... but I wasn't taking any placement, I had a list of criteria. We are heading to the classroom we want. To do so we had to spend 4mths doing psychometry testing and adding Dev Delay to keep us out of the autistic rooms. We have been given the "ok", hopefully we'll have the finally signature by Mon... Then I sign and sign and sign... We're off to a slow learners class with the most amazing teacher.
Nobody will do it if you don't. Nobody will start the conversation if you don't.
Wow, first of all I apologize for the delayed response, things have been really busy here. You are certainly self educated through experience and really do have spine. I commend you and your reply has given me inspiration along with a wake up call. Thank you so much! So did you sign and sign away on Mon.? You are very courageous and coudoos to you for taking the time to learn about the rules and programs, and yes I believe if we don't do it , no one will. You sure have opened my eyes on getting out more and it really touched me that they allowed your son to help at the checkout, wow.
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