I read the following Facebook status update recently from another Autism mom I know via FB.
"I dislike when people tell me I have a special needs child b/c God knew I could handle it. BS...I don't have a special needs mom gene that makes this easier for me than it would be for the average person. That is just what people say to make themselves sleep better at night. I am just as selfish as the next person. I wish I had been given a special gene...it would make it much easier. I am the same as you."
I couldn't help but read some of the responses to her posting. One of which was, "not being antagonistic at all-just really curious. What is the right thing to say?"
It got me thinking, what IS the right thing to say and what do I think of her posting?????
Certainly I've had many people say things to me like, "God doesn't give you more than you can handle. There is NO WAY I could do what you do. There is a reason why God gave Cole to you., etc." For the most part I agree, God doesn't give you more than you can handle. Somehow, even on the roughest of rough days Pat and I manage to make it through. Dealing with Cole when he is struggling is incredibly difficult. Even our families are surprised at his behavior at times. And yes, there are times when I hear another parent say, "Oh, so and so had such a tantrum last night. It was awful." and I want to ask, "well, has so and so ever broken a window in your home, has she put her head through the sheetrock or punched you so hard it takes your breath away? Has your child slapped you so hard that your arm stings for the rest of the night and bruises the next day? Has he ever had to be carried out kicking and screaming from a hockey arena after throwing water bottles at the crowd, punching, scratching, hitting you and then slamming his head off concrete? Oh and don't forget the popped blood vessels in his face from screaming so intensely." Now THAT'S a tantrum. And yes, it's coming from a ten year old boy who has a disability you can't see. Imagine the looks you get from people.
Autism is very humbling. But that's ok. I've gotten to the point where I can let the public tantrums, the nasty looks and comments roll off my back. I know I'm a great mom and Pat is an AMAZING dad to Cole. We are doing a fantastic job with our son and he is working incredibly hard to cope with the numerous struggles that come with his disability. And the people I love and care about most know that, too. I'm not worried about the lady who gave me a dirty look last night at Jam Hops when Cole continued to kick the indoor fence after I asked him not to several times. I am not a bad mom who does not discipline her children. In fact, I'm damn good at being a mom. I know that, my husband knows that and so do our families and friends. At the end of the day, those are the people I care about. They see how deeply we love our son, they know the mountains we have climbed, the hoops we've jumped through and the daily struggles we overcome. My energy is better served focusing on my family verses worrying about what some person at the gas station thinks.
As I said above, many people have said, "I don't know how you do it. I couldn't." YES YOU COULD and you WOULD. It all boils down to one absolutely wonderful thing: unconditional love. I love Cole with every single cell in my body. It is this overwhelmingly powerful unconditional love for Cole that motivates Pat and I to make his life the very best it can be. It's that simple. We are not special people and we are not any better equipped to handle our situation that anyone else.
SO WHAT IS THE RIGHT THING TO SAY?
That is a tough one. For me, it's not what you say but how much you cherish all of the little things. I see so many people who take the little things for granted: being able to take their children to another siblings hockey game, deciding last minute to go hiking in the woods, eating dinner together as a family, being able to change plans last minute and have your kids go with the flow, not seeing one of your kids in tears at family gatherings because the other child can't handle being there anymore, sometimes spending holidays alone because one of your children refuses to go at all, not having to play outside for 45 minutes in 8 degree weather because your child doesn't feel heat/cold the same way you do, having a home that will need $10K+ in repairs before you could possibly sell it, etc., etc. etc.
For me, I want to know that you aren't taking your life for granted. I want you to know that taking your dog for a walk while your 11 and 9 year olds stay at home for 15 minutes is a privilege. Having the flexibility to go where you want to go, when you want go- even if it is running errands and going to 2 soccer games and a dance practice, is a privilege. Having a child that can function in a neuro-typical classroom and play regular sports/activities is a privilege. Watching your children learn and helping them with homework is a privilege. The ability to reason with and discipline your children is a privilege.
Maybe a good response is something like, "You are doing a great job with your child. Kids sure have a way of making us cherish what really matters in life."
ENOUGH OF THE SOAP BOX, what have we been up to?
We are thrilled to see spring peeking around the corner. The sun has been out for the past several days and it feels great. I think we all have a little more pep to our steps these days. Pat and I just got back from vacation in warm, delightfully sunny Ixtapa, Mexico. We are so very fortunate to have wonderful family who help out with the boys while we take time for ourselves. This year, my parents and older brother, Sean, also were in Ixtapa. We overlapped by three days and got to spend some time together. The guys went deep sea fishing and had a great time catching lots of fish. We had some really fantastic meals together and loved watching the sunsets from their window-filled condo. Pat and I thoroughly enjoyed our time together and appreciate everyone who helped with the boys so we could indulge in some major relaxation!
Cole had a great time turning 10!!! He loves to tell you how old he was in each year. He'll say, "Mom, how old I was in 2005? I was 4!!!". Language might not be perfect, but he's trying hard and selfishly I see that as him figuring out simple math. :-) We celebrated with a bowling party at Ham Lake Lanes. Cole loved bowling with his cousins and family. He also had a great time singing karaoke. He walked around with the mic and everyone got a chuckle when (as he was ready to go), he announced to everyone in the bowling ally, "This is Cole. The party is over. Bowling is closed. It's time to go." Did I mention we love his sense of humor???Although in his eyes, he wasn't trying to be funny. He was a man on a mission, after all, it was time to go home.
The highlight of Cole's winter was him getting to ride on the zamboni during the U of M Women's hockey game!! For those who don't know, Cole is obsessed with zambonies. A friend from high school arranged for him to ride the zamboni between periods. He was thrilled. He waved to his family in the crowd and got excited when they announced his name on the loud speaker. He even wore his U o M jersey! Check out the video below.
Connor had an exciting winter! He is turning into a fine gymnast. We were excited to travel to Iowa City in February for his first out-of-state meet. It was so much fun! Two weeks ago, Connor and his team competed in the MN State Gymnastics Championship. His team took 1st place and Connor was the top overall gymnast for all kids at his level!! Connor has developed into a real leader on his team who, even after being at home with Influenza for a week, said, "Mom I really want to try to compete. I'm not trying to brag or hurt feelings, but I usually score high and my team needs me." Needless to say, his team took 2nd that day and Connor again placed 1st in his age group! Connor also had a great time in hockey this year. His skating and stick-handling really improved and he scored a fair amount of goals throughout the season. Now we're moving on to baseball season. Pat is coaching him this year and Connor is excited to have a lot of his close friends on the team.
We are so proud of Connor. He continues to be an empathetic, proud and loving brother to Cole. They have a ton of fun together and both have already been out riding their scooters and bikes! Connor loves school. He has a lot of friends and likes to talk to everyone. He's a great a speller, he's only missed 1-2 words the entire year!! He excels in reading and math and loves science, too. He's a huge snuggle-bug, just like his brother. And he's pumped that his bangs have finally grown out after he gave himself a haircut back in October!!
Thank you for taking the time to read my blog. I hope it gives you a snapshot as to what life is like when someone you love has Autism. And I hope it makes you cherish all of the little things in life and the freedoms and flexibility that come along with it.
