ASD Families Support Group

Hi everyone!

For those of you who don't know me or my son, I turned to this website last year when I felt I needed someone to vent to because I couldn't cope alone anymore. My son, is possibly on the spectrum, but either way has challenges with language, behaviour, social and sensory issues.

We FINALLY have his assessment appointment coming at the end of August. We have been waiting so long for this. I want to make sure that we ask all the questions/deliver all the information we need to deliver to the doctor on that day. I don't want to leave a rock unturned so to speak. The wait to see the doctor is so long I want to have all my basis covered when we go.

If you have any advice at all about anything I can do/bring with me to make the appointment as productive and worthwhile as possible I would greatly appreciate any tips/advice!

THANK YOU!!!!

Lisa

Hi Lisa,

I'm so happy to hear that your finally getting the assessment and I believe this could a turning point for you ANSWERS I would just write everything down including all your questions his behaviors and his progress and any regression. I would tell them your daily challenges and what is really troubling you most with your son and then let them do their own observing. Its such a nerve racking time but the more you feel prepared the better so I agree just map it out! Good luck cant wait to hear how it goes! Deja

Sounds great! I sat down and wrote out his behaviours/traits/our concerns in point form notes on cue cards so I can flip through them quickly at the appointment. I tried to classify them as concerns with "language", "social", "sensory" and "play" as these are the main areas he struggles with. I think this is the way to do it because I know I will be a bundle of nerves that day and I don't want to forget anything. I don't want to have any regrets. I want to lay it all out on the table and see what they think one way or another!

I have also contacted the Language and OT therapists to ask them for their official write ups.

When he was an infant I started writing things down trying to figure out why it was so hard to raise him. Upon rereading my notes I am seeing a common thread. We had to hold his arms tight against him to get him to calm down as a infant... now he likes to give/receive a "squeezer" and be tucked into his covers "snug as a bug in a rug" (aka all tightly wrapped in his blankets). Would notes like this from infancy through to date be helpful or is it better to just explain that?

I also have a copy of a social/emotional survey/screener from 2 years ago when I first contacted a community agency for help who advised me to see a pediatrician. Would bringing a copy of this survey be helpful/show the long lasting nature of his issues?

So this is a little off topic but in the last couple of months my little manny has started talking using a really strange voice that we don't like. It's like he is talking in a growl voice. He will get right up in his baby sister's face and talk in a growl and scare her/make her cry. Any suggestions on how to extinguish this behaviour? He thinks it is funny. We try to explain to him that it is not funny... in fact it is scarey for his little sister. He proceeds to tell us that she likes it and it makes her laugh. We feel so frustrated that he just doesn't see how his sister and others are perceiving this strange behaviour. Aww... it's always something. It seems just when one quirk fades away another new one replaces it!!!

You sound very prepared so that's great and it's funny how you said he always has a bad behavior I think I have said the same exact thing about Charlie. If we get her to stop a behavior then she finds a new one...I believe its a sensory thing. I think it maybe like a sensory/stemming deal. Most of the behaviors are things like chewing on her fingers or taking and putting something in her mouth and running and hiding under the covers to even playing with her spit. Also saying NOOOOOOO has become one but for the most part her are more like doing bodily things. I was told to ignore behaviors and redirect them when doing them never giving to much attention to the behavior itself. I think its effective but again the behaviors continue. Sounds like your son has Sensory Processing Disorder or Sensory Integration. Good thing is these things can be helped a great deal through therapy so thats a big plus!!! Good luck and please tell me what happened as soon as you hear!!!! Hang in there Lisa XOXOXOXOXO