Thursday, April 30, 2015

Autism Awareness 2015: We Survived Kindergarten!

As this year's Autism Awareness Month comes to a close, I want to stress the most important things that I would like other people to know:

1.  If anyone out there reading this has a child or is close to a child who seems to be delayed in reaching milestones, lacks proper emotion, and displays any odd or repetitive behaviors or interests, PLEASE do not hesitate to mention your concerns to someone in a position to help.  Sometimes, even doctors can be dismissive of your observations.  Ask someone else.  Find another doctor.  Do not say "they will catch up" or "not MY child", because the number one most important thing you can do is help a child.  Even if there was no reason to be concerned, even if the child does not have autism, EVERY CHILD DESERVES A CHANCE.  The BEST chance.  Set aside your petty dignity, swallow your pride, stop worrying whether you are just imagining it, or if your doctor will think you are crazy, or if no one believes or understands...it is NOT ABOUT YOU.  It is about getting a child help as soon as possible to give them the best possible opportunities in life.  PERIOD.

2.  My definition of Autism Awareness is to make people aware that a family's struggles with autism are real.  We need help.  We need understanding, patience, compassion, love, and support, NOT pity.  NOT sympathy.  I do not feel sorry for myself or my son.  He is a beautiful, intelligent, loving, funny, blessed child with a happy home, tons of supportive family and friends, and a wonderful life.  There is nothing to feel "sorry" for.  What I do need is positive energy.  I need people who can help me teach my son everything he needs to know in life: at church, at school, at home, in public.  So far we have been fortunate to have the best therapists, teachers, aides, and family and friends, more than I could have dreamed!  Yes, it does make me sad sometimes to think about how different he may act, or to worry about what his future will be like, or worry how independent he will be.  But then he says something silly to make me laugh, or he looks at me and is just so adorable he melts my heart.  Then I remember that He is a beautiful creation with a purpose.  He is growing up and doing so awesome!

3.  Getting help (services like private therapy, school interventions) is the number one key to managing autism.  There are professionals trained to help your child, and most of all, they teach you how to help them too!  The services that we have received, combined with all that I have learned from therapists and my educational background, have led to our success story this past year.

My Carson has made more awesome strides this past year.  And it has been another WILD year!  We survived introducing a new baby to the family, changing the family dynamics, just months before Carson started his educational career in kindergarten!  He went from one sister to two, from preschool at the Child Development Center to kindergarten in regular local public school.  That was a lot to take in!  It was a very difficult first semester, with lots of meltdowns, learning curves, interventions, and tears.  I shed lots of tears.  We started a communication notebook so we could write back and forth, the teachers, therapists, aide and myself.  I was completely in the dark as to what had been happening in the first couple of weeks.  After this started, I was able to find out how he was behaving in school.  It was scary.  He was hitting, kicking, throwing things, and spitting when he got angry, things he had never really done before or had stopped doing since he had gotten older and been in therapy.  Everyone tried different interventions to help him cope with his surroundings, feeling that the Sensory Processing Disorder part of his autism was causing most of the problems.  I started thinking, racking my brain to try to help find a solution.  This did not sound like my child who had done so well in preschool and at home.  I went to work with a couple of theories I had.  Two things in Carson's usual routine had changed:  He was no longer in any private therapy, and we had stopped going out.  We went to school, sometimes church, and we went home.  I did all my errands while he was at school.  By not taking him out in our usual routine, which included eating out at restaurants and grocery shopping in Walmart, he was not being exposed to all that sensory input.  Those are loud places that he never had a problem with.  And now he had a problem with the lunchroom or the bathroom being too loud.  He need to be desensitized again.  Going out with him to all those places is sensory therapy.  I also reenrolled him in private speech and occupational therapies.  All of the awesome professionals working with him at school worked hard to test, develop, and implement a plan to help him self-regulate and focus.  I don't know which of these things, or if the combination of them, is what worked, but it did.  Eventually, his behavior improved, and then upon return to school after Christmas break, he was a different child at school.  Like a switch was flipped.  Not a single meltdown for weeks, and any fits he has had since have been few and short-lived, and also the reason has usually been understood.  Someone ran in front of him, or stole the ball from him, or it came a thunderstorm.  I think just him growing some (he had a spurt) and maturing helped as well.  His communication skills vastly improved, and continue to do so.  He even asks and answers questions like never before!  My child never ceases to amaze me!  He is a wonder to behold!  Another part of his life in school I have worried about is social relationships.  I know this will probably always be difficult, and I know they are still so young right now, but he has had some wonderful classmates.  He has a few that have shown him friendship and affection and have touched my heart in doing so.  It just gives me hope and reassurance that in the future there will be people who love and care for Carson.  He will have friends and he will be loved.

As amazing as his kindergarten experience has been and has evolved from its rough beginnings, that much more now do I worry about next year!  The end of this year is upon us already, and I feel like I haven't even caught up yet!  I didn't do nearly as much with him at school as I imagined I would.  Partly, I felt like he did better when I wasn't there, and the other part is, I have two smaller children at home I have to care for myself during the day!  One who had surgery and the other who has PKU like Carson and has been challenging as well (with her special diet).  But as I said, we survived...and thrived!  I am hoping next year will be easier since he will be at the same school with the same people, so maybe he won't have such a problem adapting to the new routine.  He is excited about becoming a first-grader!
He was sick the first picture day, so his actual
portraits haven't arrived yet.  I will edit this
as soon as they do!

Anyone out there who wants to know more about how we handled this past year, feel free to email me.  I am always willing to listen or give any advice I can.  I know what it is like to feel such fear and dread before sending a child with special needs to school for the first time.  I am so proud and thankful to be able to say that our story concluded in success!  I am actually ready for the upcoming IEP meeting (but still dreading it a little).  Good luck to all you new school mamas!