How Things Have Changed in 6 Months (#Autism)

A year ago, my son was considered to be “non-verbal”. Six months ago (around our move from Big City, Ontario to Small Town, Ontario, and especially him starting IBI), he started using words on a more regular basis, but it was only about 20 words, and it was still intermittent. Fast forward to two nights ago…

He regularly wakes up for 2 – 4 hours overnight for what I call his “Autism party” where he plays constantly for that time period. Since I’ve taken everything out of his room except for his bed, bedding, and his one stuffed animal (Mikey Mouse) that he takes everywhere, it amazes me that he can spend so long playing. In the morning, I am encountered by all the bedding taken off his bed and his mattress will be folded in half, or leaning up against a wall, in whatever shape he has decided to create. At first, I was amazed that he could do this, now it’s just “normal”.

Two nights ago, his “Autism party” consisted of him talking NON-STOP.  His favourite thing to say right now is “Oops. Almost. Try Again”, which is a statement from his favourite game on TVOKids.com.  After an hour or so of him saying this (and laughing his head off each time he said it), while moving everything around in his room, and me telling him to lie down and go back to sleep, I finally lost it and told him “stop talking, be quiet and go to sleep!”. Of course this didn’t work, but I chuckled a few minutes later when I realized the irony that I’ve gone from desperately WANTING to hear him talk, and now I was telling him to stop talking in such a short time period.

For the record, I want my little man to keep talking, more and more every day so I can learn from him…BUT, I would really appreciate if he would NOT do it during the wee hours of the morning.

 

Looking for YOUR Autism Story

After my son FINALLY started IBI therapy in September, I had an epiphany: Autism stories are as varied as the Autism spectrum itself (shocking!).  So, to celebrate Autism Awareness Month in Canada, I’m putting the call out for guest posts (you don’t have to be a blogger, a professional blogger, a writer, etc) to help share our stories with eachother.  We can all learn from eachother and the only way to do that is by sharing.

So, please contact me if you:

• Your child/grandchild has Autism
• You support (through a family or friend connection) a child/adult with Autism
• You yourself live with Autism

Some prompts to help the writing juices start:

• My diagnosis story
• My search for services
• My journey with the school board
• How I manage the appointments
• How I manage the paperwork
• What has “worked” for me and my family
• What hasn’t “worked” for me and my family
• What Autism means to me
• What I wish others would understand

Some of my posts that may help inspire you:

• My Son Started!
• Autism tags on my blog: http://imamomtoo.wordpress.com/tag/autism/

This call for guest posts does NOT end in October. I would love for it to be a year-round thing!  Our learning NEVER stops!

Find me on Twitter at @imamomtoo,  on Facebook or email me at imamomtoo(at)gmail(dot)com if you are interested in participating. 

 

My Son Started!

My son FINALLY started IBI yesterday!  Even better, he loves it!  IBI is the “be all and end all” of therapy for children with Autism.  Unfortunately, not all children qualify for IBI but my son met all the requirements to qualify, so then we were placed on the standard waitlist in the Autism field.  The technical definition of IBI (according to KidsAbility) is a program that…

• uses systematic behavioural teaching methods
• has clearly defined strategies & goals
• is individualized to the needs of each child
• incorporates changes based upon direct measurement of each child’s learning

Basically, this means that my son will benefit from 21 hours PER WEEK for at least a YEAR of a combination of one-on-one and small group interactions with speech therapy, behavioural therapy, and occupational therapy.  When he finishes the program (ie: he’s met all the markers along the way to continue his developmental progress), there is a 6-month reintegration program in full-time school.  This means, he is now attending IBI 3 days per week in the nearby city, and is at school 2 days per week for Grade 1.  IBI is considered by the Board of Education to be his primary instruction so he will receive a special code instead of being “absent” from class.

InOntario, IBI is offered as a Direct Service Option or Direct Funding Option.  Because I don’t have the $70,000 extra to select the DFO option that was offered to him in May (the government does reimburse a small percentage of that but still…), moving back to my small town meant that my son was moved up the waitlist for the DSO option as his diagnosis date was in 2007, and in the new region, they were working with children with diagnosis dates in 2009.

Waitlists are “normal” in this field.  Ironically, when he qualified for IBI 3 years ago, I just *knew* that he would be starting IBI at the beginning of Grade 1 and, thankfully, that is exactly what happened.  He’s “ready” for it now.  His verbal and written (via his iPad) communication has been cascading since we moved. He’s become even more aware of what’s going on around him, and the routines that are natural to others…and therefore are starting to become more natural to him too.  He’s using echolalia now, and is mimicking things and people around him.

Even better, he gets excited whenever I mention KidsAbility, which is where he receives IBI. 

In fact, last night, my daughter even said:

Daughter:    “Mommy, I wish I had Autism.”

Me:             “Pardon?  Why hunny?”

Daughter:    “Because then I could go play at KidsAbility too.”

I’m so happy that BOTH of my kids are excited about my son starting IBI.  He’s ready, he’s willing, and he’s excited!  Can’t get much better than that!

 

PS – I would love to hear about your journey with getting services for your child with Autism, positive AND negative. If there are enough people who would like to share, I would love to start a guest post series on my blog. Message me at imamomtoo.meghan@gmail.com if you are interested. We all have different stories to offer, and I want to help facilitate communication.

 

Speak Up For Special Needs!

 

 

 

Was at the Early Years Centre this morning with my soon-to-be (next Wednesday!) 6 year old DS for its “Something Special” program offered every Thursday morning.  It’s a program where parents of kids with special needs and their children can come and play.  The toys put out are more sensory-based than when we regularly go there.

 

I was speaking with another mom whom I met last week.  Her son is entering Kindergarten this September and we have been chatting about how to advocate for your child.  She’s having an issue with her son playing soccer.  The coach’s son is bullying her child a bit, and instigating bad behaviour in her child.  I was offering suggestions of the type of language she can use with the assistant coach as she’s pretty sure the assistant coach is aware of the issue, based on comments he’s made in the past. 

 

She’s a very calm and quiet woman so I was trying to encourage her that this situation she’s encountered with soccer will be great practice for her in advocating for her son in Kindergarten in the fall.  The big difference she and I had walking into Kindergarten was that my son has an official diagnosis (of Autism) whereas her son doesn’t yet have a diagnosis. 

 

My kids had been in daycare prior to Kindergarten so we didn’t have to work on transitioning to school at all…especially since their former daycare centre was located in a school.  That made it a bit easier for my son.  In Grade 1 this September however, he will be attending a special needs class at school AND (hopefully) IBI will have started/be starting. 

 

My biggest advice to parents of children with special needs, diagnosed or not, is learn how to be assertive with the school system.  If your child can/may/will benefit from something, ask for it to be implemented.  If you work with the school, they will usually try to do as much to accommodate HOWEVER, also empower yourself with your school board’s policies related to special needs and special needs accommodation in the classroom.  Request a meeting with your principal (and teacher and Educational Assistant) prior to school starting, and continue to follow up until you get that meeting.  Be the “squeaky wheel” but please be nice about it. 

 

Arm yourself with information and knowledge because YOU are your child’s best

and sometimes ONLY advocate!