Carson the Awesome

The sky is the limit for this boy!

On this last day of Autism Awareness Month 2014, I wanted to reflect over this past year and the amazing progress Carson has made.  One year ago he first received a diagnosis of Autism Spectrum Disorder.  One year ago he started occupational therapy and private speech therapy, and also received both therapies through the school system.  In August of last year, Carson started preschool 3 half-days per week at the Cullman County Child Development Center, a special school for children with all kinds of developmental delays.

All of these things, along with general maturity, I am sure, have helped tremendously with his development.  This child is so different from a year ago.  Last year, Carson did not usually speak in full sentences, and most words he spoke were hard to understand.  There were times when I never knew what to expect from him:  what he wanted, how he felt, or what he understood that was going on or being said around him.  He was nowhere near being potty-trained.  Today, this child can argue with me.  He tells me how to drive.  He answers me when I ask him what he wants to eat.  He tells me if his tummy hurts.  He tattles on his little sister.  He is brutally honest.  And he talks about the baby in my belly (he has decided she should stay there; he doesn't want her to come out and play with him and Maggie!).  And he is potty-trained.  All by himself.  He tells me when he needs to go.  None of these things did I dream possibly would happen within a year.  At least not all of them collectively. 

Yesterday, we went for his semi-annual PKU checkup at the UAB Department of Genetics.  The doctor he has seen there the last few times, Dr. Maria Descartes, was so amazed with his progress over the last 8 months since she had seen him, and she just went on and on about it.  She remembered how he cried and fussed and did not want to be there, even seemed afraid (or annoyed).  He did not want to cooperate with anyone and would scream and cry if anyone tried to get near him or get him to do anything.  Yesterday, my big boy climbed up on the exam table, pulled up his shirt, and said, "Listen to the baby in my tummy, doctor!"  He cracks me up.  He loves going to the doctor.  Dr. Descartes declared that Carson was "awesome", and taught him to say so.

Tomorrow, we register for kindergarten at our local public school.  A typical school with all different kinds of students.  Tomorrow we take a giant leap of faith.  This mommy is scared to death!  I know this is just the beginning, just the legal/formality part.  We have not yet had his IEP meeting to discuss all his needs.  That will be coming soon, I am sure.  Everyone at preschool says he is ready.  I worry about how much help he will need.  No one is even sure if he needs an aide!  There is so much to consider, so much to be done, so much paperwork, so many decisions, so much planning...but it is going to happen.  Starting tomorrow.  I cannot believe it.  I never imagined it would be here this soon...or that he would be ready.  But I think he is.  I hope I am.

Everyone who knows Carson and is around him at any time is amazed.  I am constantly amazed by the leaps and bounds he has made.  It is so much easier to communicate with him now.  It helps that he can relay that he understands what we are telling him.  That makes meltdowns easier to diffuse before they happen.  We can explain plans to Carson before they happen, and when he knows what to expect, he handles it so well (most of the time).  Of course, because he has autism, he still struggles with things.  He has times when he cannot transition from one thing to another without getting upset, or times when he is focused on something and doesn't seem to hear or listen.  There are moments when he does not seem to understand what is going on.  There is a need for routine and sameness, repetitive things.  He wants to do everything himself and to always be first.  If these things don't happen, some days there may be a meltdown.  But for the most part, compared to a year ago, it is diminished.  He is easier to rationalize with, although sometimes so stubborn that he would argue whether or not the sky is blue!

It feels like a fog has been lifted from around Carson's head.  He seemed so far away, so hard to reach, but now he is with us.  He sees us, he hears us, he talks to us.  I am beyond thankful for all the reasons that he is where he is today.  I am thankful to Dr. Lane Rutledge, his other genetics doctor at UAB, for setting us on this path to have him evaluated and diagnosed.  I am thankful for Early Intervention beginning speech therapy with him right away, over two years ago.  I am thankful for all the therapists that work with him now, privately and at school.  I am thankful for his teacher and aides and nurse and everyone at the preschool who has any contact with him.  I am thankful for all my closest friends and their children, who help me by lending a listening ear or a shoulder to cry on, and for allowing our children to spend time together and learn from each other.  I am thankful for our parents and grandparents and all our close family members who care about Carson, take an interest in all things to do with him, who have patience with him, and have taught him so much of what he knows already.  And for helping me by being willing to babysit so I can be with Carson at therapy and learn how to help him at home.  Most of all, I am thankful to God for sending me this precious gift, the most precious little boy who is such an inspiration and such a treasure to my life.  I am thankful for being entrusted with his care, and for being equipped with all the tools I need to make sure he gets everything he needs to flourish and grow and learn.  We are definitely beyond blessed.

And Carson is definitely AWESOME!

I want to stress again to all parents out there who have been given any reason to believe their child is developing differently in any way, to have them tested.  Take them to a professional, whether they are behind in speech, or motor skills, or social communication...there are therapies for all of these things!  There is NO shame in admitting your child needs help!  The best thing you can do for your child is to find the help he or she needs, and you need.  Early intervention is the key, and it is the best thing that can happen for you, your child, and your family.  Don't delay!

Five Things THIS Autism Mom Wants You to Know

5.  My Son's Diet has NOTHING to do with his autism.

Carson was born with a rare metabolic disorder known as PKU, which is a recessive genetic trait that causes an enzyme in his liver not to function properly, so it is not able to process all of protein.  This can cause toxic levels in his brain if not treated properly, which can cause permanent brain damage.  This is tested for on all newborns through newborn screening.  His PKU was discovered within a week to 10 days of his birth.  PKU HAS NOTHING TO DO WITH AUTISM.  Therefore, Carson is on a strict medical low-protein diet for PKU, which is VITAL TO HIS LIFE.  He is NOT on any special diet because of autism.  I wish I could stress that more so everyone could understand.  It is a currently growing trend that some people with autism are doing gluten-free and casein-or-dairy-free diets, which many claim to help with autism symptoms, severity, and behaviors.  I do not wish or need to discuss whether or not this treatment is helpful or effective.  It has no bearing for me or my family because Carson has his own specific diet he has to follow, and we are doing just fine.  So please, take me VERY SERIOUSLY when we deal with Carson's diet because it is extremely important to his health, NOT his autism. 


4.  Every person with autism is an individual.

Autism is a very broad spectrum disorder.  There are many characteristic behaviors and symptoms used to reach the diagnosis, but no one person probably exhibits all of them.  They are all very different and unique.  You cannot just use the word autistic to describe a person and have a sterotyped picture in your head of the way that person is.  NO two people exhibit autism in the same manner.  Carson is considered to be on the milder end of the spectrum.  He has a few repetitive behaviors, which tend to change over time.  He has very blunt and straight-forward speech, so he doesn't necessarily get sarcasm or figurative language.  He loves routines, has an excellent memory, and does very well when you explain things to him very literally.  He gets very excited, and sometimes has a hard time concentrating, while other times he can focus for hours on something.  He is a typical boy (and a bossy big brother) who loves to run, jump, play, ride bicycles, drive Gators, throw rocks, you name it.  There is so much about him that is completely "normal".  He just may be a little awkward to some at times, may have a hard time understanding how others feel, and sometimes has dramatic reactions to unexplained things.  He is an individual with his own thoughts, feelings, and opinions, and I expect him to be treated that way.  Not as someone who is "autistic", because there is no real definition.  Which also means, there is not just one way to work with him, either.  Not all strategies fit all people and all situations.

3.  Raising a child with autism is not easy, and I am sure living with autism is hard, too.

I get frustrated.  If I had any advice for parents out there it would be that it is ok.  It is normal.  We are not super-human just because we were chosen to raise a child who has special needs compared to most.  We are still human like everyone else.  I get upset and angry at my children.  I yell and I punish and I have meltdowns too.  I feel horrible about it when I do.  The reality is, this is difficult.  We have to try so many different things to help Carson understand how to behave and how the world works, and sometimes it takes a while to find what helps.  Even then, it changes all the time as he is constantly growing and changing and learning.  Keeping up is a very daunting task.  It takes a lot of time, thought, and energy.  Sometimes, I need to sit myself down and think about how Carson feels.  He gets frustrated too.  He gets angry.  He doesn't understand a lot of things, and I can't always explain them for him to understand.  It is easy for us to forget that so many little things which come so naturally to us, like putting on shoes, are such a challenge for him, and he has to work on them.  It is so hard, but I need to try to remember to think about his feelings and not be so quick to react harshly to a bad behavior.  There are just so many extra challenges.  Out of that come the wonderful victories, when it feels so good to see his mind click and understand something!  I love it!

2.  Think before you speak...and before you judge.

One of the most important things I have learned in my life's journey so far is empathy.  I am very aware now of other people's children when we are out in public, and I get very irate when I see someone being judgmental toward a parent having a hard time.  Everybody has an opinion about parenting, even if they have no clue about parenting at all.  The last thing any parent wants is the unsolicited advice or opinions of strangers, especially when out in public.  It is hard enough trying to fight off feelings of embarrassment when dealing with our children if they are upset or misbehaving.  What parents really need is support and understanding.  That is not to say that there are not just some complete idiots out there with their kids; there are, and I am pretty sure I have seen a few.  But far be it from me to judge whether or not someone is just being an idiot, or just has a very difficult child, maybe even with autism.  Behaviors that come with autism cannot just be "spanked" or "bribed" away; there are many reasons why it is difficult, and if you have not been there you have NO IDEA.  I am the kind of mom who is going to take my children out no matter what.  They need to learn how to behave in the world and how to get along with other people.  Keeping them at home when they are being "difficult" does not teach them anything.  How am I supposed to raise my children to be functioning members of society if I am too concerned about what "society" thinks when my children act horribly in public?  Have a little patience, and sympathy, for parents out there who are trying their best, like me, to adapt their children in this world.  You can thank us later when they grow up to be high-functioning members of society, maybe your doctor, or maybe even your president. 

Which leads me to the #1 thing I want you to know, and that is:

1.  We just want love and acceptance.

If you know me, whether family, friend or acquaintance, you know about Carson.  My Carson is a very sweet, kind, loving, precious boy.  He is not mean, hateful, or violent in any way.  He is an innocent little child, and I would love for him to stay that way, not to be corrupted or changed by the world.  I have many fears and uncertainties about his future, but I keep faith and hope in my heart that tells me, because of his wonderful personality and his adorable face, he will be just fine.  I have dedicated my life to taking care of him and all his needs, and do the same for all my children.  I just want what any parent would want, for everyone to love my child and care about his needs as much as I do.  I guess this is why Carson starting kindergarten this fall has all these thoughts so heavy on my heart.  He is going to be in a different environment than where he is now, where his actions and behaviors are not as understood and accepted, and where he may become noticeably "different" in the eyes of others.  Perception is a huge factor in treatment and fairness.  I fear that autism sometimes carries a certain stigma that may cause people to automatically think that Carson cannot do certain things.  Carson can do anything he sets his mind to.  Carson is just like any other person.  He has his own personality, feelings, and basic needs, he just sometimes sees things, hears things, feels things, and thinks about things differently than most people.  He is very intelligent and knows most everything he should know at his age plus a bit more.  He is an amazing boy who deserves every opportunity life has to offer, and I hope that everyone out there who works with him now and in the future will be able to see past a diagnosis and see a child with a bright future who just needs a little extra help and different strategies along the way.

Autism Awareness

Not only is April Autism Awareness Month, but today, April 2nd, is World Autism Awareness Day.  The Autism Speaks organization runs a campaign this time every year called Light It Up Blue.  While I do not have any blue light bulbs to display this year (not that anyone that happens to drive by in this neck of the woods would get it, or see it for that matter), I am planning to do everything I can to spread awareness.  After all, this day is especially meaningful for me because it was on this day, exactly one year ago, that my son, Carson, was officially diagnosed with Autism Spectrum Disorder.  Pretty amazing, huh?

And wow, what a year it has been!  I have never been on such a crazy emotional rollercoaster in all my life!  Life is so full of twists and turns that completely take us by surprise, because we never imagine any of this when we are youngsters dreaming about our future.  I never in my wildest dreams knew there was a possibility that I would have a child with PKU (which I never even heard of back then) or even a child with autism.  Because that stuff never happens to me, right?

This year has taught me a tremendous number of lessons about parenthood and life in general.  We had so many giant upheavals in a short period of time.  Maggie had surgery on her foot, then Carson was diagnosed with autism, then we made the decision for me to quit my long-time job and stay  home with them, which changed everything.  It changed our insurance, our routines, our home, our relationships...it changed me.  I am still muddling through trying to figure out who I am now.  But one thing remains the same:  I am a MOM and a WIFE.  I am striving every day to try harder and be better for my family.  And now we await the expansion of our family, arriving this summer!

I have not only learned about myself and my own family, but these trials have introduced me to new people and revealed character in others.  The saying goes "you find out who your real friends are", and that is true.  Take out the negative connotation for me though.  All of my friends are stellar people in whom I can trust anytime for anything.  It just has shown me a deeper side of my friends and family.  My life is so blessed and full of special, loving, caring people who so obviously do care about each of us!  I am beyond thankful.  There is no way I could be going through all of this alone.  I have the best support system in the world!  All of the therapists and teachers who have been added to our lives, those who work with and help Carson learn what he needs to know in life, are extra special.  We are blessed to have each of these particular people that God has placed in our path in His infinite wisdom.  I have zero negative experiences so far.  Everyone has been so awesome!  I am even amazed still how God placed us on the right path from the beginning, having Carson's PKU doctor already in place as a neurologist and child development expert who was on top of this and encouraged us to begin testing Carson when he wasn't speaking.  Talk about the right place at the right time!  The clinic Carson has been visiting since he was born just happened to be the place to evaluate and diagnose him for autism!

BLESSED is obviously the running theme here.  I want to cry every time I think about how far we have come this year.  I look back at videos of Carson and hear him barely able to pronounce words properly or string them together, and then I think about today, how he argues with me, and says the opposite of whatever I say, and gets sassy with me, and fakes being sick to stay home, and begs his little sister to play chase with him...I am just in AWE.  What a difference a year makes.

What a difference a diagnosis makes.  I know there are so many parents out there who are like I was.  I told myself, and others told me too, that he was just a little behind, that he would eventually catch up.  I am so grateful for Dr. Rutledge and her encouragement.  I was so reluctant to jump on that spinning wheel of testing.  There was nothing wrong with MY child.  She only began with asking us to get his speech and hearing tested.  I knew he could hear just fine.  He could hear a toilet flush from one end of the house and come running (because he loved to watch the water go down).  Then he started this pacing thing, and flapping his hands when he got excited...and finally I decided to do it.  She suggested we eventually do the full developmental workup, for which we had to wait almost a year, but we did it.

Looking back, there are so many little things I never even took notice of.  And now seeing Maggie do these things before she even turned 2 just blows my mind.  I had no idea, since Carson was my first child.  He struggles with so many little things.  He still cannot put his shoes on completely by himself.  Maggie changes shoes all day long.  Carson is practicing handwriting in occupational therapy all the time, but he still needs help.  Maggie knows how to hold a crayon without even being shown.  There are just all these small tasks that I never dreamed Carson would struggle with.

It may sound awful to compare my children, but it has helped open my eyes to what Carson needs, which is very important.  And Carson is so amazing!  He is so smart and so active and so social and so "athletic" (in a few ways lol), that it is easy to overlook all the little challenges he struggles with.  My point is, anyone out there who is reading this and may be facing similar thoughts or situations, jump on the wagon.  Testing is no big deal.  If it is just a delay, they get the help they need.  If nothing is abnormal, at least you know.  The sooner a child can receive help and therapy and intervention, the better their progress will be.  I am SO thankful that we did it, and that we got the diagnosis so we know his needs.  Carson has been receiving private speech therapy and private occupational therapy, as well as these therapies at the developmental preschool we enrolled him in this past fall.  These people who help him every week, and who teach me how to help him at home, have all helped fuel this huge explosion in Carson's development.  Don't delay...decide today!  IT WORKS and IT HELPS!

Our next big challenge is coming up very quickly:  sending Carson to Kindergarten.  At public school.  With all the other kids.  With a special diet.  With autism.  With an IEP to develop.  I have never been so terrified in all my life!  What a huge step this is going to be!  The best part is knowing that I have been and am still connecting with a network of people in my life who are going to be there to help us with this process.  And help me with my sanity!  And anyone else out there, just pray for us!

This has been and will be a long and sometimes challenging and difficult road to travel with our family.  We don't know what the future will bring.  But we know we have people who love us, people who are trained to help us, and a loving God who is putting it all together in our path.  My advice to other parents out there is to surround yourself with the right people, find the help you need for your family, and love and celebrate everything about your children!  They are unique, precious, fascinating little people who will blow your mind every day!

How blessed I am to be able to call this MY journey through parenthood!