Ever since July 1, 2004, the day of Cole's Autism diagnosis, Pat and I take things one day at a time. Selfishly I'll admit, it can be daunting to look far into the future and envision what lies ahead for Cole and ourselves. I try to spare myself the anxiety, stress and fear of the unknown.
Realistically, we are too busy putting out fires. We simply don't have the luxury to plan things far out, guarantee we can stick to commitments we make and 'going with the flow' is not part of our vocabulary. Don't get me wrong, we try very hard to make our lives as "normal" as possible, but we also know Cole's limits. Not everyone understands the decisions we make and that's ok. We are getting better at saying no sometimes, leaving events early or having 1-2 of us stay at home. We are figuring this Autism thing out as we go, and even though not everyone understands it, Autism is the filter for EVERYTHING we do and it impacts literally every facet of our lives.
I was looking on the MN Autism Society website this week. As I was scrolling through, I came upon this... "1 in 88 children being diagnosed each year, our quest to find what works for our one child seems as daunting as the autism-related Google results page. Often, the formula for more “good days” is found in a combination of therapy, social skills training, education on safety, and the commitment of a caring community." A few words caught my attention: more "good days". It brought me back to the day Cole was diagnosed. Our Dr told us our lives would never be the same, that we would grieve this diagnosis like the death of a child and the most important job we had been assigned was to advocate tirelessly for Cole. He was right about all three.
In taking things one day at a time, our mantra is to have more good days than bad. We use all of the tools in our arsenal but many days, it just isn't enough. Cole has other plans. Pat and I fight this "war" every day, as any parent would. At times it seems our plan of attack works really well and at other times, Cole drops a grenade and everything blows up. Lately we've been dealing with an increase in his aggression. It's happening at home, school and out in the community. Sometimes we can see Cole building and we know he'll become aggressive but other times, it comes out of nowhere. When Cole is in a "mood", Pat doesn't like to leave me alone with Cole. He's nervous Cole will hurt me. Cole is 11 years old but he's much bigger. He's growing out of size 16 jeans, wears a size 7.5 shoe and a few months ago weighed almost 110 pounds; most of it solid muscle. When you combine that with frustration, lack of coping skills and inability to reason- it can be really tough. We are working closely with school and an in-home Autism specialist to address his aggression and other behavior concerns we have. Pray for Cole. We need to get him back on track. He needs his troops behind him.
On the bright side, we received some fantastic news today. Cole's amazing Case Manager got confirmation today that next year our family will receive a one time grant to do up to $40,000 of environmental modifications to our home. This is HUGE!!! I will try to post pictures but many of you know the Cole has done quite a bit of damage to our home. We have a person who specializes in assessing the damage and designing modifications and/or repairs to prevent further damage. More news to come on this!!
Here's the quick update on our family and what we've been up to...
In September I went to Cape Cod with my mom, sister, sister-in-law and her mom/grandma. We rented a house for a week and toured the area. It was a wonderful time. We loved Cape Cod and thoroughly enjoyed our time out East.
We also went back to the Noble Family Farm this fall. The boys had a blast, as always. This time it was even more exciting, as we surprised Cole the morning we left with dune buggies. Noble's were having them repaired and we had them parked in the driveway to bring down with us. Cole's reaction is something I'll never forget. He was super excited to "drive fast and take chances".
Cole was thrilled when we bought a new John Deere riding lawn mower. He literally drove our other one into the ground. He loved going with Pat to bring it home. He got to see the back area of the store and the salesperson Mike gave him a baseball cap. And of coarse when we got it home, it was Cole who showed Pat how and what to turn on so we could get it off the trailer. :) I can't wait for tonight, the plow attachment came in so Cole will be in for another treat. Yes, he plows our snow, too!
He loves Zamboni's. I took him to open skate this past weekend. The driver noticed Cole and waved at him at every turn. The driver even turned on the lights and honked the horn. Cole thought it was the coolest thing ever. And again, he knew every move the driver was making... "it's time to use the board brush, he's got two more circles left, etc."
In October we took the boys on the Osceola train. It's a really fun thing to do with your family. The drive to Osceola is pretty and there are nice places to eat lunch. Cole loved snuggling with Pat on the train. We saw Eagle's nests, rode over a high bridge and ate treats. Cole improved significantly from the first time he rode. A few years back, he lost patience while waiting for the train and (in front of a crowd of people), started hitting his head off the hoods of people's cars.
The boys loved Halloween. Pat was out of town, so it was just me. Thankfully a few of my family members came over. We ate soup and got the boys ready. Cole was Batman and Connor was a zombie. Cole was all about the tractor and trailer. Grandpa hooked it up and off we went. Grandpa started out driving but after only a few feet, Batman took over the wheel. He navigated through the streets and only went to houses where he knew they did not have pets. Connor didn't complain one bit as he hung out with Cole while we passed a trailer full of the neighborhood kids. He stayed with his brother and only after Cole was ready to head inside did Connor join his friends. I didn't even have to ask him to hang with Cole. In Connor's mind, he was with his best friend and that was all that mattered. He's so good to him.
We enjoyed a nice Thanksgiving at the Schusted side of the family. Cole lasted about 4 hours, which was big for him. He loved helping Grandpa Al carve the turkey. Things ended on a sour note, as he got anxious toward the end and punched Connor hard in the back for no apparent reason. It left Connor in tears, with a big red mark on his back. Cole felt bad about what he did, so he ran upstairs and stared slamming doors, yelling, etc. Needless to say, we left after that. We are thankful he lasted for as long as he did. We got to catch up with family and enjoyed looking through the family tree album Grandma Schusted made for all of her kids.
As for the rest of us, life has been good and quite busy. Pat's job continues to go well. He's been traveling a fair amount to many areas around the country. We were excited to be invited to attend a Regional Leaders Meeting in Grand Cayman. Pat and I will go there for a week in February. We honeymooned there over 15 years ago and haven't been back since. It will be nice to meet some of the out of town people he works with and visit a place so special to us.
Connor has been doing great! His football team won their second consecutive championship game this year. Pat had a fun time being an assistant coach. Pat ran the defense. The team allowed only 41 points scored against them in 12 games, 10 of which were shutouts. It was great season. Now we're moving into the competitive portion of the gymnastics season (Connor trains year around). Connor moved up to level 6 this year. He's excited about the challenges that lie ahead of him and has been working hard to learn the advanced skills. When spring rolls around, Connor will play traveling baseball this year. He tried out, along with 35-40 other kids and made the top traveling team for the city of Blaine. 12 kids made it and he was one on them. We are very proud of him and look forward to that as well. Connor does very well in school and likes to work hard at it. He loves to read and excels in math. He also got invited to try out for a special district wide choir but couldn't due to his gymnastics schedule. Not sure where that talent came from, I can't even sing in the shower!!
I'm doing well. As I posted in my last update, I recently went through training to become a Group Fitness Instructor. It's so much fun and a great personal challenge for me. I'm teaching three formats at the YMCA: Bootcamp, Ripped (a weight and cardio class) and Latin Hip Hop. It's been a lot of work to get up to speed on three formats, but I love it! I wish I would have done it years ago.
Thank you for taking time to read my blog. It means a lot to me and I hope you come away with a better understanding for what it's like to live with and parent a child who has Autism. I also hope it put things in perspective and gives you an even greater appreciation for the little things in life. Happy Holidays and God bless.
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