I remember the call so vividly - the day JD was diagnosed with autism there was ONE person in my life who could understand what I was going through. Her name is Amy and her middle son Harrison has autism. We had met a few months earlier through what I can only describe now as divine intervention. I called Amy the night we found out about JD, sobbing hysterically because she was that knew how I was feeling. I had no clue what my future held. When someone tells you your child has a major disability you instantaneously realize that what you thought your life was going to be like is thrown out the door for some massive unknown space. But back to the call...
Amy listened as I cried, and let me talk through my range of emotions. But at the end of the call she got real. She said - "Lindsay, you are JD's advocate. He NEEDS you to be strong because the next few years will define so much of his life." She wasn't talking about therapy, sure that would be a major part of the my life and I would have to fight with insurance companies to pay their fair share. What she was talking about funding.
Amy told me - "Listen Lindsay, from this day forward, until JD gets into Kindergarten you will have to fight for him. Don't get me wrong - you'll still have to fight for him after he goes into Kindergarten, but these next few years will define so much." Amy went into great detail about something called the McKay Scholarship. A state-funded program that allows your child to take money that would otherwise go to their public school and use it for a private school of your choice. There was a matrix... 251 to 255. And my whole goal as a special-needs parent was to get a 255 because that meant the most funding.
Amy told me - "Lindsay, as a mom you will naturally want to focus on what JD CAN do, but you have to change your mindset. You have to focus now on what he CANNOT do. You're going to go to meetings, lots and lots of meetings, and people will ask you all these questions about his development. Don't lie to make his case look better! If he can't say 5 words, don't say he can because you wish he could - this will only hurt you in the long run! His funding is determined by what he CANNOT do, so take that mommy mindset and flip it upside down. You want the most for him, so you have to focus on the bad for a few years."
She was dead on. As a mom, my natural instinct was to "brag" about my kids... Ashley walked by this month... JD rolled over on x date. We ALL do it. But what I had to realize is that now I had to completely switch my mindset and focus on what my child couldn't do.
For the last three years I have been to so many meetings, so many therapies, so many schools discussing the things that my son cannot do. And the fight is now officially over. Last month we found out that JD got a 255 matrix score - the highest you can get! We were hoping, fighting and praying to get a 254 and when 255 came in I cried. Then this week we found out that his funding is $19,457! I feel like I'm still in shock, but what's even stranger is that I feel a weird let down from it all being over.
I feel like McKay has been my goal for so many years now, and it's over. I keep staring at the screenshot in disbelief. I'm kind of lost in a way. For the first time in three year I can breathe. No more IEP meetings. He starts at First Hope in August and we'll be on the next phase in his life! Without the McKay Scholarship there would be no way that he could go to this school (as you can see from the picture, the tuition is extremely expensive!) but we know it's the best place for him!!
I know this is just the next step in his journey. One door closed and another one opens. I'm a little nervous for what the future holds, but I feel SO amazing in our accomplishment! I'm also excited because we can finally begin focusing on the GOOD rather than the BAD!!! Thank you Amy for giving me the first direction from day ONE! And thanks to everyone reading this for being there for us along the journey!
