For A Friend in Need

Hi my favorite sources of support and sanity! I have a friend from my myspace site, Cherie, who is in need of some advice. She lives in Ontario Canada and has a sweet little 4/5 y/o boy named Aidan. He's on the spectrum. Mom is making no headway with the schools and is pleading for advice and suggestions. I'm reposting one of her myspace blogs here and asking for your comments and ideas which I will, then forward on to her (unless, of course you have a myspace account - then you can reply directly to her myspace blog).

Wednesday, February 07, 2007 - 8:02 PM

It all begins... I knew the day was comign but didn't expect this...

This is going to be a long blog, so grab a cup of tea and sit back. So this is where things are at: Aidan attends nursery school three mornings a week for two hours at a time. During this time the nursery school has a schedule and Aidan has done really well in learning how to do all of these activites and transition from one to the next without much difficulty. The children have 30 minutes of free time a day and during this time Aidan is given about 5 activities to do. Even if he hates the activity he iss till forced to do it. This is something I was not aware of, and it was also not shared with me until today that Aidan was literally having meltdowns after he was being forced to do these things i.e. a puzzle. So Friday afternoon their is a case conference regarding Aidan being held at his nursery school. At this time his preschool resource witll be there. (This person goes into the nursery school and works one on one with Aidan once a week, and gives the nursery school directions on ways to help Aidan etc... p.s. might I add this woman has been working with Aidan for 1 year now and has done no training with autism...) Aidans SLP (Speech Language Pathologist) will be attending to give the nursery school different suggestions on how to promote communications with Aidan and activities etc. to keep him using speech. (This SLP has only seen Aidan 3 times and that has been once a month and nothing hands on has happened with her. So I have demanded more one on one speech therapy with Aidan once a week, instead of this once a month for an hour crap.) All nursery school staff will be present (3 of them) They are great ... really! I swear to god they are all Mary Poppins. Always happy and cheerful... kinda makes me sick haha.... no really they are great. Anyhow... Aidan SSAH worker (Special Services At Home.... same a s Respite just more hours and she does what I need her to with Aidan. Currently we get about 12-15 hours a week, and we have been concentrating on socializing Aidan out in public, swimming and any activity I feel he needs help with i.e. crafts, task completion activities...etc.) Of course I will be there as well. I guess I am having a bit of a bitch fit right now, because Aidans Preschool Resource worker has a horrible habit of trying to run the show. It's like she assumes I cannot do it. Trust me, this mamma can more than handle it... infact it is always me giving the sugegstions or getting the tools... I am his advocate. Now I am silly to even say this because we all do this so you know... but these people just don't get it sometimes. It is important to point out that the Preschool Resource works with all children from all different areas... NOT specifically children with Autism... infact on her caseload,...she has maybe 2 out of 50 that have autism. Ya seriously. She also has not educated herself with autism, learning tools or ways to help Aidan so she in turn isn't able to give those suggestions and advice needed to the nursery school because she doesn't have the training to do it. to me it seems like she is using all methods to teach Aidan... sorta seems like treating a broken leg with a bandaid... She just doesn't have the training necessary. Also being as this is a rural area 2400 people... my options of switching her is pretty limited. So the preschool resourse phones me at home today to say, "I think we need to video tape Aidan, and send that video in to have him re-evaluated for IBI / ABA" Ok... now in Ontario, Canada only those children who are on the severe end of the spectrum even qualify and Aidan was diagnosed as being mild. Aidan also is past the stages of IBI / ABA and the entire PECS program because he is so verbal, he makes requests, he knows his ABC's, 1-20, Colours and is able to put a few 2-3 word combinations together. Aidan was seen and assessed by a child psycomotrist (who only deals with autisitc children). I phoned her today as she is the one that the Preschool Rescource wants to haev the video tape sent to. She was as angry and appauled by the suggestion as I am. She said, "Cherie, no matter how many times this child is assessed... he will never be severe... and he defiantly will not benefit from IBI / ABA because he is past that... the skills taught using IBI / ABA ... He already has those skills." It seems like Aidans Preschool Resource is seeing IBI / ABA as the be all end all therapy to cure this child and that is just not the case. She drives me crazy. I have had to limit her time around me because she seriously makes me want to beat her. I realize that a large portion of her clients parents, ... do not know who to contact or what services to access. A lot also are not really great parents and lack skills, like the ability to do laundry, wash a floor or cook. These are all areas I do NOT need help in. This she knows. So back to the Nursery School and Preschool Resource. So I am being told when Aidna is at the nursery school that they are having a hard time transitioning him from one task to the next and that he is having meltdowns, or it is taking two of them to physically move him to the next activity. What are your thoughts??? I am thinking... 1) He isn't getting enough 1 on 1 2) He is being given to many options and is overwhlemed 3) Aidan is being forced to do activities he hates (don't get me wrong of course he has to be pushed and forced to try new things but is in necesssary every morning that he is there??) 4) 3 mornings in a row Aidan has cried when I have dropped him off... this is something that he never did before... why is he doing this??? Again we have a meeting Friday so any imput you could give me or suggestions... hit me with them, because I want him to continue at the nursery school but I also want everyone else to get it together and put some emphasis on Aidan and the fact that he does have autism..... nott hat autism is everything but he does have it. Ok... what has worked for you guys??? I feel lost... Gees I hope this makes sense... lol

I know you guys are full of resources & suggestions. This is what I wrote in response:

Hey Cherie -
First, I want to applaud you for YOUR restraint for not beating the crap out of that woman! Secondly, I also blog at MommyGuilt with a group of wonderful parents of kids on the spectrum. These people are from around the globe, from different population sizes, different school systems, etc... I urge you to also pop over there and start reading and checking out their blogs. A couple of bloggers you should check out are Kristina, whose Charlie is more towards the severe end of the spectrum, andKyra, whose 5 y/o "Fluffy" has Asperger's. Both are fountains of knowledge on programs, schools, resources, helpers, etc. Pick their brains and tell them I sent you.

Extremely important:-YES, YOU are Aidan's advocate! You know what strategies work best with him. Try to, without seeming on the defensive, push this to the teachers, perhaps by writing a "manual" or an "about me" from Aidan - I'd be happy to send you a couple of the ones we did for SmallBoy. Also, very important, especially if the school staff seems to feel the need to take charge of the meeting and push you off to the side. See if the psychomotorist is available to either attend the meeting, in person or via conference call.

In answer to your questions:
1) He isn't getting enough 1 on 1 - Probably not, but from the way it sounds, it's because the school, as we all say, doesn't "get it." They need education from YOU on the best things to do for Aidan.
2) He is being given to many options and is overwhlemed - Absolutely. I hate to use this analogy, but it might be the simplest for the teachers to understand....it's like when your computer is taking too long to process your commands and then overloads because you keep pushing the buttons over and over trying to make it respond...Same theory in play here.
3) Aidan is being forced to do activities he hates (don't get me wrong of course he has to be pushed and forced to try new things but is in necesssary every morning that he is there??) - No, it's not necessary, especially at his age. If they could choose, say , one activity a week to have him work on and let the other ones slide for that week, then perhaps he could slowly be worked into them. Also, if the teachers help him do the activity in a "fun" way....in a way that they are doing it together, that sometimes helps. Look into RDI (Relationship Development Intervention). That sounds like the track that you guys should be doing, particularly if he's well past ABA and is verbal.4) 3 mornings in a row Aidan has cried when I have dropped him off... this is something that he never did before... why is he doing this??? - It could be a number of things: stress, anxiety in anticipation of being made to do something he doesn't want to or doesn't understand.

Oh and back to the meltdowns: If those teachers had any clue, they'd understand that he's in nursery school and he's on the spectrum....of COURSE he's going to have meltdowns. What you need to do now is find a plan to help him work his way out of the meltdowns, either on his own or with their assistance.

Check out my MommyGuilt blog and get in touch with some of the wonderful people on there. They'll give you some guidance and some suggestions. They're great great people.

She needs your suggestions. Thanks guys!