Changes are coming!!

I look back on the day Cole was diagnosed with Autism. It was July 1, 2004.  Pat and I had were not prepared for Cole's diagnosis. He hit so many of his milestones and being the first grandchild on both sides of our families, we just thought he was a very active, curious child. I'll never forget the feeling of being in Dr. McLellan's office that day and the shattering words that came from his mouth, "There is no easy way to tell you this, but Cole has Autism." I remember I was sitting across the room from Pat and the only thing going through my mind was "keep it together, just keep it together". The doctor left the office to gather some information for us and we just stared at one another.... way too many emotions to even have a reaction. The doctor came back to us, gave a folder and told us to get in touch with the school district ASAP. I know he shared a lot more with us, but my ability to actually process his words was significantly impaired. I do recall one thing he stressed, "You will grieve this diagnosis like the death of a child." He was right, there are times when I still grieve in that way today. We left the office with Cole and walked to our vehicles. It was then that the words sunk in. We stood in the parking ramp, holding each other, and cried. I remember looking up while hugging Pat to see a mom with five children behind her. It was obvious that one of the children had cancer. It quickly put things in perspective for me. Despite my overwhelming sadness, I knew things could be so much worse. This was not a death sentence for Cole, it was the start of a lifelong journey for our family.

Many parents describe life with Autism as if you were on a plane to Florida and you land in the north pole. There is no road map and it is not what you signed up for. There are some things you know; Autism is a lifelong disability, there is no cure, time is critical and every child with Autism is unique, so what works for one may not work for the other. The learning curve for Pat and I was exponential. Not only did we need to learn about Autism, we needed to educate ourselves on what therapies existed, how we would pay for them, how he would get there and countless other things. We met with numerous people, made tons of phone calls and tried our best to maintain our composure. I would quickly learn that managing Cole's disability is literally a full time job. And it is also a race against time. 

One of the therapies we tried was in home ABA (Applied Behavioral Analysis). We were fortunate to move up the long waiting list fairly quickly. When Cole was four years old, we had an ABA therapist come into our home. The program would be intense. A minimum of 25 hours a week. We were so thrilled to have this opportunity. ABA is one of the few known therapy interventions that can significantly improve children with Autism. The therapist was very nice and helpful. Cole, however, had other plans. He reacted so violently to having a therapist in our home. I remember her trying to get Cole to take a single Goldfish cracker from her. He threw an intense tantrum. We both tried to calm him but he escalated. He was kicking, scratching, climbing on me and really hurting me. It got to the point where the therapist herself had to remove herself from the situation. I was crying so hard I could barely talk. She asked if there was anything she could do. Between gasps, I told her to get a wet towel (Cole was into that at the time). She got the towel and I put it in Cole's mouth. Miraculously he calmed down. The therapist looked at me and said, "This just isn't going to work with Cole." I was crushed. And hurt. Cole was so rough with me that I recall it hurt me for at least three days to wear the seat belt in my car; remember- Cole was four. 

Fast forward to spring of 2008. It came to my attention that the MN Autism Center (MAC) was creating a center-based ABA program in Minnetonka. The second I found out, I called and placed Cole on the wait list. I called every month to find out Cole's status. I went to the open house in September and fell in love with the facility and the employees I met. The facility is located in a renovated building, amongst a few acres of wooden trees. It was perfect. In October we finally got the news we were looking for. There was a strong possibility of an opening for Cole in the "near future". On November 1st, I took Cole for an assessment. Paul was amazing with Cole. We left the assessment and Cole said, "Go to MAC. Have fun with Paul." Just this week, we found out there is a full time opening for Cole starting in January!  He will be one of twelve kids in the center based program. 

Like I said before, there is no road map with Autism. There are countless things to try and only so much time in each day. The wait lists are months, if not years long. No matter how much you do, you feel like it is never enough. We are truly blessed to have Cole in place to start this program. We know it will help Cole and our entire family. More importantly, we know Cole wants to go and he will be happy. A happy Cole is a happy family.