Tuesday, February 15, 2011
erinoak ibi therapy funding for max after 27 months.
This afternoon we got the call. The call we have been waiting for since Max was diagnosed with Autism in December of 2008. Max's name has finally come to the top of the Erinoakkids IBI funding wait list. This means that as of March 1st, we will no longer be footing the entire bill for Max's essential behaviour therapy. A huge financial burden has been lifted off of our shoulders. We can finally exhale.
I thought I would feel overjoyed when Max got picked up for funding. I thought I would want to dance in the streets. But I don't and I didn't. What I'm feeling is more a huge relief (and I'm also in shock because it really felt like this day would never come). When I got home from work today and saw Max, I wanted to cry. For him, for us, that we somehow made it, and that facing this period of adversity has shown us just how many people are truly rooting for our family, for Max.
I'm going to keep sending positive energy out into the universe as it seems to be coming back tenfold. Time to pop the champagne.
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Amazing! Just amazing. I'm so happy. We'll celebrate this weekend.
ReplyDeleteYes!! Lots of celebrating!!
ReplyDeletewow, I am very very happy for you! Awesome.
ReplyDeleteCongratulations to you and Scott, who via basketball I discovered your blog and for some strange reason, can't stop coming back. This is a testament to your wonderful writing style, photo taking, and ability to open yourself up with no reservations.
ReplyDeleteCongrats Kat! You and your family deserve this, after working so hard! I'm lifting a glass to you all! Way to send that karma out...
ReplyDeleteBtw, I have already introduced your site to one of my daughter's friend's parents, who have an autistic son and are waiting for funding here in York Region. I just updated him on your good news. He wrote me back from a previous post the following which for privacy reasons removed his son's name since I do not have his permission to post:
ReplyDeleteWhat I found interesting is that In Halton region, the wait for therapy is "only" 2.5 years.
_____ was put on the list in April 2008. We started as number 285 for York Region.
Now it's almost Feb 2011, just under 3 years later, and we are now number 77. So if you do the math, our wait will be 4 years long. And if _____ is judged to be "too good", then the wait was for nothing.
I knew there was a variability according to where you happened to live, but I didn't realize it was this much! Thanks for indirectly passing this other infuriating fact on to me!
And as an aside, the funding will be for "only" $30,000/year, which in almost all cases does not cover the full extent of the costs. Fickled Feline for example disclosed she pays about $70,000/year.
He invited me to a Raptors game a few weeks ago and just listening to all the issues he has to deal with with so many people at all levels of the health care system, government, teachers, etc. showed me how much work still needs to be done to educate people about autism and raise money as well for all concerned.
Additionally, another friend of my other daughter also has a younger brother who is autistic, so I am indirectly involved to various extents with both families via my girls.
To reiterate, I am ecstatic that you are getting some financial relief finally, and thank you for your wonderful uplifting site.
Kat, it's been quite the long haul for you guys. I am thrilled for you and even more thrilled for Maximus. Celebrating with you and we'll chat more when we meet at the end of the month.
ReplyDeleteLots of love,
Rhonda
Congratulations on both getting the funding and surviving the wait. I just started reading your blog recently and am amazed by your strength and stamina as parents. We are just at the beginning of this journey, but I already feel like we’re behind the 8 ball. My son is 3 ½ and we’re waiting for a developmental assessment to determine what’s “up” with him. He is severely speech delayed, and as he gets older, we are starting to realize that he may be delayed in several other areas as well. We still have at least 18mths to wait at ErinOaks, but thank goodness he is already in their speech program. We’ve also been at blueballoon for about a year now, but I haven’t been super impressed with them up to this point. I’m considering doing a private assessment with them, but am waiting to hear from our pediatrician first. Where did you get Max assessed for a diagnosis of Autism? Was it only through ErinOaks, or did you involve blueballoon as well?
ReplyDeleteThanks so much for opening up your life and experience; you are so inspiring. We can get through this……
Four years in York Region? Yikes. We waiting less than a year in the Southwest.
ReplyDeleteKatrina and Max: Congratulations, I know exactly how you feel! What wonderful news and what a burden lifted from you! WOOHOO!
Have been living under a rock for almost a week, and this is fantastic news to see once I climbed out. Doing a happy dance for you!
ReplyDeleteRaising a glass to you all as I write this. And crying tears of relief for you. FINALLY.
ReplyDeleteThanks everyone! It is STILL sinking in.
ReplyDelete@Anon - we got Max's diagnosis from Dr.Sharon Carson in Burlington. She is a paediatrician. Hope that helps. If you aren't getting what you want from blueballoon I would speak with Kim Pace. They always have good intentions, but sometimes there is a communication gap between what you want/need and what they are delivering.
Thanks for responding Kat. We just got booted out of an appointment with Dr Carson (been to her before and love her) for unknown reasons...something about her moving her practice...now my family doc is waiting to hear back from a different paediatrician in Burlington. All this waiting and bouncing around is driving me crazy.
ReplyDeleteWe're going back to blueballoon in March. I will definitely have a chat with Kim.
Thanks again and good luck to you.
Great news. We can only dream of that day! We are hoping our son qualifies for the waitlist! In the next 2 wks we should find out.
ReplyDeleteANON you can hire a psychologist to diagnose your son. We waited on a 20 mth wait list for the ErinOak Developmental Pediatrician. I wish one of the agencies we dealt with had have directed us to a private psychologist so we did not have to wait so long! We immediately put our son in private IBI this past march when he was 4yrs 3mths old! I wish we did it a year ago!
Moving forward we are seeing some positive changes in him!
Hi, I have some doubts about this condition, first, why or what provoke this? and what is the best treatment in our days? thanks for the information.
ReplyDeleteYeah but he might not get funding there for long.
ReplyDeleteYou are entering the arena where he has to meet mandated goals and if he doesn't, he'll get kicked out of the program. It's not easy. Every 6 months he has to achieve so much or the child is kicked out.
And Erinoakkids is a pathetic organization. The don't give you clear mandates, regular status updates, clearly define goals to allow parents to work with their children to meet the goals.
It has been a constant struggle, for us to keep our son in their program, and he is just barely still in. Other parents we know have already gotten the boot.
So good-luck. You're going to need it.