Saturday, February 27, 2010

Art and Music Therapy

I mentioned in my last post that Carson has started art and music therapy at the FAR conservatory in Birmingham. What a wonderful place! He had his first session this past Wed and did really well.

Carson was having a bit of an "off" week and I was concerned about how he would do but he was so excited to go that I did not cancel. The first thing he had was art. He did enjoy it but was very distracted by all the items in the room. He was a bit off task and at one point got mad at his therapist and told her she was on the naughty list. He even called her a butter head. I left the room at this point as I thought I was more of a distraction than a help and he did finish up his work and seemed to have fun.

Music was a joy. He loved it. The smile on his face and his dancing and singing were so sweet. This place is amazing. They have tons of instruments for him to try and make up songs all the while working on focus and fine motor skills.

When we were all done and walking out, Carson took my hand and said - I love you mom.

To any mom this is music to their ears. To a mom of a child that is considered speech and language impaired - this is magic! I remember the time when he would/could not speak at all. Not even answer a yes or no question. No eye contact. Just stared off into space. All this work is worth it and to know he is happy and can express himself..... amazing.

Yep, I think he had fun and as a parent that is all you could want.

Wednesday, February 24, 2010

Flying time

Hello all. I promise no drama in this post. Time is flying by and I can't believe it will be March in just a few days.

March is such a special month for us. Carson will be turning 6 on the 15th. We have a fun party planned at Pump it Up. He is super excited and I can't wait to see his happy face! He even has a few gifts that he has already said he wants.

February was such a wonderful but busy month for us. Each weekend we had two to three commitment's and I am happy to report that we got through them well and had fun. This weekend is my cousins bridal shower and a family party for Jay. I will be taking Miss Mia with me so that Jay and the boys can go do something fun together.

Just a few funny things to report -

  • Griffin and Carson have really gotten back into wanting popsicles. Who does not want a Popsicle when it is a snowy blizzard outside? By the time Fin would get to the middle of the Popsicle he would complain that his hands were too cold. All on his own, he went and got out his gloves. Now, every time he has a Popsicle he has to eat it with gloves.

  • Carson starts music and art therapy today. He has his evaluations last month and LOVED it. I actually cried when I saw how much fun he had playing the piano and making up songs. The people that will be working with him are wonderful and he is already very excited to go today. It makes me very happy that he can receive 'therapy' by doing things that are fun.

  • We are all longjng for some sun. Carson is asking to go to the beach everyday. He even got his hands on our thermostat and set it to 82 degrees. Just yesterday he asked me if I could turn winter into summer. I love that he thinks I have super powers but I disappointed him greatly when I could not seem to make it warm up outside.

  • The boys, Jay and I went sledding last week. I have taken Carson a few times but this time, Fin got to go. Fin is not nearly as adventurous as Carson and I waited on taking him until Jay was there so we each had a child. Fin did enjoy it but then he got some snow in his face and that was it. He was done. Carson on the other hand, loves it and wont quit until he physically can't walk up the hill anymore. I wish I had some pics but am too scared to take my camera as it might get ruined.

  • Our little Diva is sick right now. She has an ear infection but I am super happy to report the RSV test came back negative. She is miserable and whimpers all day. Breaks my heart but I know she will feel better soon. When she does feel well, she is a little charmer. She has stolen my heart and I have to stop myself from eating her face;)

Love you all - Em

Tuesday, February 9, 2010

Safe, Loved, Accepted

Long ago in this journey I attended an autism in-service with my sister. She is a teacher and was going anyway, so she invited me to tag along. At that time, I was very confident that it would be for informational purposes only since, there was no way MY BABY could have autism.

I don't remember the presenters name but he was some sort of PhD or MD or expert. He was very good. He did a great job of explaining everything and at that time it was all new to me. I felt very smug sitting there thinking, what wonderful information to store in my brain but nope, we won't need this at all.

I was so very wrong. Even at the time of that seminar, we knew something was wrong. We had just started hearing the "A" word and my heart was so scared and so broken that my denial allowed to at attend this seminar without thinking I would ever personally need the information.

The presenter kept emphasising three things. He said that children on the spectrum need to know they are 1. Safe, 2. Loved and 3. Accepted. To me these are things all children need to know but for some reason, these three things have stuck with me almost four years later.

These three things have saved me from feeling like I was failing as a mom. On the really bad days, weeks, months.... I at least know that Carson knows he was safe, loved and accepted.

It might be hard to understand but there are still times that it hits me out of the blue and I am still in total denial. I still can't wrap my head around the fact that I have a child with autism. A child with a disability. A special needs child.

That is me. I am that mom. I am the mom that I have stared at in stores. The mom I have read about with admiration and sympathy. This was not suppose to be me. I never wanted it to be me and I still don't.

When these moments hit me it is overwhelming. My chest gets tight, I feel like I can't breathe. Strange.... I don't cry as much anymore. At times, I feel like I am all cried out. My mind goes to all the dark places it should not go. All the statistics. All the worry about his future. Even with Carson doing so well and being so high functioning the statistics are hard to hear.

Yet at the same time... I feel overwhelming love. I know in the big picture we are lucky. It could be so much worse. That does not change our life though.

I feel like we have been on a treadmill for four years. We have made great gains but I am tired. I admit it. I am really tired. And I feel guilty for being tired. I am no where close to giving up but there are days where I want to hibernate and think of anything other than autism.

There is not a day that goes by without some sort of apt, therapy, phone call, meeting, etc. To top it off anything new we add (to help him) is in addition to what we are currently doing.

The professionals say - he has to mature, let his body catch up to his brain, he is doing really well. I just want more and I want it now.

You may not realize that Jay and I protect him a great deal. We plan our whole life around him, what is good for him, what works for him, what makes him happy. There are only a few people that see the really hard days. The days where he is a mess. The days when he is very, very challenging. He is only five and there are days where he does not want to go to therapy, take his supplements or follow his diet. There are days when his autism is so obvious it smacks me in the face.

The good days fill me up and get me though the tougher ones. But the really bad days can make me feel really dark and sad.

I am not sure what it is about this time of year. Maybe the weather, being dark so early, being stuck in the house. I am just in a bit of a rut right now and feeling very overwhelmed with life. I want to know what it is like to just play. Go bumming with all my kids. Not need assistance and help. Not have this call to make or that appointment to attend. I want to know what it is like to not study everything my child eats or ingests. What it is like to not be constantly researching the newest and best. What it is like to not be worrying about how we will afford what is new and best.

So, once again, at the end of the day.... I can at least have faith in the fact that Carson knows he is safe, loved and accepted. If I do nothing else as a mother, I want all my children to know those three things. Some days it is only these three things that I feel I am able to accomplish.

Funny how something so obvious can get me though these days.