I heard that phrase a few times during a recent visit with an awesome Fragile X family, a family that I am so happy to call friends. It was amazing to watch Cindi and Chris Rogers parent. I learned so much. It was so great to pick their brains while they were here visiting. Hanging out with them and their boys was SO MUCH FUN!! In the beginning I thought that's all it was, one FX family getting together with another FX family. I didn't know at the time how their words and their parenting would shape the next month in our lives. Mike and I had no idea how much we would lean on words that were said or concepts that were touched upon in simple conversation.
You all know if you read the blog regularly that Hayden is having a pretty rough year. The toughest we have seen not only at school but at home as well. I haven't wanted to blog or even talk about it. Frankly it's been heartbreaking to watch and believe me I have have had to watch A LOT. Hidden in closets so that I would not be seen to observe what his day is like. It seemed so cruel to me for the district to ask me to compare my child with his "typical" second graders. I mean hello...I know he's not like a "typical" almost 8 year old child. Why do I need a reminder?? I have an almost 8 year old who still loves "goodnight moon" and an almost 8 year old who can't ride a bike, or read or do math and I have an almost 8 year old who can't tell me what he wants for Christmas. I KNOW the difference. I see it everyday in my community, on facebook, and all around me. I watch as his three year old sister does things that he can't. He has a hard time when daddy takes him to school cause that's not our normal routine. He has a hard time when any little kink gets thrown into our normal routine. Why do I need to go and "watch" him in a class of his typical peers??? Why??? But I did it and I can admit that after I put the emotions to the side (yeah that's me crazy mom crying to the gen ed teacher) and really watched, it was eye opening. These words kept coming back to me "this is more about you then it is him". I had to ask myself several times "who is this about?" "who are we doing this for"? Realizing that it was about ME and it was for ME (I can be selfish like that who knew?). Realizing that I had a little boy who was so frustrated and overstimulated in a situation that "I" thought was the right situation. In a situation I pushed for because that's what I was told I had to do. This was about me and not Hayden.
These last few weeks have opened my eyes to a whole new way of thinking. It has opened my eyes to look at Hayden differently and to look at what his needs are. I am so thankful for an awesome Special Education teacher that goes above and beyond what each individual child needs. I got to watch an entire lesson that was taught laying down cause that is what Hayden wanted to do. I got to watch my little boy be happy and successful. I got to see how proud he was of himself because he WAS successful. We now do homework laying down or sitting on the floor instead of at the kitchen table chair. These things that I so selfishly thought I had to do. I mean really sitting in a seat is so overrated anyway. Google employees don't sit in chairs they sit on balls and they are supposed to be the happiest people around. So maybe he will get a job at google someday. Is there really anything better than to see your child successful no matter what it is or at what level they are at? I have had to let go of some of my expectations and realize he's just not there. I have had to ask myself questions I didn't want to ask or even think about. I have learned though that once you take the first step the second is easier and the third even easier. Am I giving up on my goals for Hayden? Not at all...I'm just reevaluating how we get there and how long it might take. In the words of my husband, we are "going back to blocking and tackling". I think it means we are going back to basics. I know we have had a lot of huddling and very few touch downs. But the touch downs that we have had have been amazing and we would probably get penalized for excessive celebrating. So for now we take a step back, go back to basics and start thinking about what is best for Hayden. I have looked at Hayden with new eyes. Lately those eyes have been tear filled. I have seen the ways I have failed him and I am trying to make that better now.
Moving on to Cupcake..it's still hard for me to type Cynthia...lol She is having a sleep study done next month. That's another blog post for another time. Please pray that we find answers to her sleeping troubles. Can I say I want answers but nothing too dramatic? Can I pray for that??? Again sometimes I can be selfish I admit it!! She is talking up a storm and doing what all good little sister's do...driving her big brother a little bit crazy.
Me well I feel like I am treading water in one place and not going anywhere. I feel like one thing gets resolved but there are four more waiting. I feel like one mess gets get cleaned but there are eight more waiting and two more messes currently getting created. I know I am the ONLY mom who feels this way. EVERYONE else has it totally together. Every other mom is feeding there children four course meals and has all the Christmas presents wrapped already. I just know it's only me treading water and not going anywhere. But, hey I bought a pair of non mom jeans so life is good. Honestly in light of recent events I am blessed to have IEP's and sleep studies and messes. I am blessed to have noise and two little children fighting. I am blessed on Christmas morning my babies will open their presents that I have wrapped. I am blessed to be treading water.