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Monday, November 18, 2013

School Pics, IEP & Changes

This is Carter's preschool picture- not my favorite of him because he has a cute smile, but still one to keep for the memories.  We've been putting him in overalls a lot lately because they're the only pants that stay on well!

We had Carter's IEP (individualized education plan) a few weeks ago, and it went well.  He still qualifies for USDB and will attend until he is 5.  We will re-evaluate every year, and for Kindergarten we may have to consider another school.  I hope he will still qualify for USDB because of the extra time, attention and therapy he gets.  But I will be content with what he can get.  In most of his goals (compensatory, motor, gross motor, social, etc) he is now in the 1-2 year range.  His teacher and I marked him at a 7 month old level based on some tests, which is hard to swallow because he is almost 4 now.  He has come a long way though, and we are all very pleased.  I love his teacher, his school and everything they do for him.  Carter got a new driver (his 4th now) that takes him to and back from school in his wheelchair.  He gets to go up a ramp now, and it means less carrying him for me.

As far as therapy goes, his last day for horse therapy is this Friday.  I didn't sign him up for winter quarter because of the weather, long drive and the possibility for illness.  I hope to sign him up again for spring, but we'll have to see.  He enjoys the horses and sits up straight and tall.  He is still receiving physical therapy weekly at the Rehab Clinic, and we are going to try to get him a gait trainer.  We put him in a Kid Walk last week and took a walk up and down the hall- the therapist had to control his legs but he did well and looked up a lot.  We noticed his neck to back muscles are weak and have tightness, so we'll have to work on that.  It's so fun to see him so tall and standing. 

Starting in January, Carter's dad Chris will be going back to school.  We are excited and nervous for the change.  Chris already has his Associates from SLCC but wanted to go further.  He will be working full time still and school full time as well.  The Davis Applied Technology Center (DATC) is in Salt Lake close to his work, where he'll certify in machinery.  It will take up to 2 years, but hopefully faster because he's worked with machines for 4 years now.  You can start or stop anytime, they accept Financial Aid and you go at your own pace.  Really cool.  They have a 97% rating that students have a job lined up before they even graduate.  I guess machinist jobs are in high demand right now.  This means better security for us and more pay eventually, but also means less Dad around.  A lot less.  So wish me luck!

Thursday, November 7, 2013

People Reacting to Special Needs

I've been thinking off and on about how people are with Carter, or react to him.  I find that I have at times been disappointed, saddened, and even surprised.  Since Carter's diagnosis, I've made new friends with similar challenges and have found those friendships to be strong because of our shared experiences.  These people have been supportive in a way that I need and am extremely grateful for.  I ran into this quote on Pinterest and loved it:

  "I am a special needs parent.  I have very special needs.  I need you to be there for me.  I need you to be there for my family.  I need you not to pity my child.  I need you to teach your children acceptance.  I need you to listen when I need to talk.  I need you to not judge me.  I need you to understand why I don't always call.  I need you to be my friend.  I am a special needs parent.  I have special needs."

I have had several people come up to me in grocery stores asking if Carter has autism.  It doesn't really bug me, but that is a pretty generalized and incorrect question.  I don't mind people asking, because it means they are interested.  I also don't mind stares if it isn't for super long, and a question follows.  I would do it myself if the roles were reversed.

What does bug and hurt me though, is when people choose to ignore Carter or act uncomfortable around him.  People in my own extended family do this.  I would much rather them ask me how to interact with him, or at least attempt to say hi.  I understand playing with him seems daunting, but he is such a happy kid.  I always tell people- if you get up close to his face and say hi and talk with him, he will hug you and smile.  He likes to play like other kids, and he does react.  I find it hurtful and disappointing that even though he's been here for almost 4 years, people still know nothing about him.  Carter will get up on his knees which is pretty tall, since he can't walk, and he'll go up to someone to touch their face or person, and smiles to indicate 'hello' or 'I want to be picked up' or for you to 'play with me'.  There have been times those people have been uncomfortable and ignored him or even moved away.  How hurtful, for a child like Carter to reach out with his limited capabilities, and have someone reject him.  Just because they are uncomfortable with him.  Yes, he can be a little rough sometimes and grab hair, but he isn't trying to hurt anyone.

The times I have been surprised and pleased is when random people ask me how to interact with him and then do so.  When people say 'hi Carter' and are sweet with him.  When random people on Facebook write me often to encourage me- that comment on pictures of Carter and say how handsome he is and special- that try to be involved.  Those are the people I truly love and cherish.  If you love my son, I will love you even more back.  A big thank you to all those that have picked him up, wrestled with him (dad), sang songs to him (mom and Mary), and more.

My point is this- if you are uncomfortable with someone in your life that may have special needs, just ask the parent how to interact with them.  They will appreciate your effort.  I am trying to grow thicker skin, but when it's present not in strangers but my own family- it is hard to get over.  Carter's teacher said it best in her report of him 'Carter is a happy boy.  He loves his musical toys.  He can activate simple switches.  Carter does give a clear signal when he wants an activity to be repeated.  Carter is a special little boy with potential if given a chance.'