Happy Birthday, Carson!: Eight Years of Parenthood

Eight years ago today we became parents. Our rainbow baby, Carson, was born on a Sunday morning just before Sunday School was starting. If you don't know what a rainbow baby is, it is the baby born after a previous loss (such as, in my case, a miscarriage). Like all my pregnancies, the first one was a surprise. I was not planning to become a mother yet, and I was caught off guard. Once I was over my initial shock, I got really excited about it. Unfortunately, well, it wasn't going to happen that time. But that experience showed me just how much I really wanted to have a baby. It changed me in many ways and helped me mature and be ready for the next time. But nothing could have prepared me for this journey of motherhood I am on now. I look at these smiling faces in this picture and barely can remember how blissfully unaware we were of what was to come. Just a few days later we would receive a call that altered our reality, the call about PKU. It was rough at first, but we became pros at the whole diet control thing. Then just a few years down the road we ended up on a totally new path when we found out Carson has autism. Two devastating blows to our rainbow dreams. But here we are, 8 years later, walking hand in hand through this incredible journey with the most precious soul God could have created. I know everyone that knows him well completely adores him. I also know most people only see the best days and the best posts on facebook and the best photos. But please know that our journey is not all sunshine and roses and happy smiles. It is hard. And some days Carson and I both shed lots of tears. The happy smiles and sunshine and roses are what makes it worth the tears and the screaming and the hard times. I just hope that I can help someone else by being honest about our struggles. Hold your head up high and know that you are never alone in whatever you face. God is with us and sends His angels to us when we need them, sometimes in the form of family or friends or a song or even a post on facebook.

Thank you to everyone who has wished Carson a happy birthday today. I know EVERYONE in the whole school knew what today was!! LOL He is the sweetest, kindest, most loving and funniest little guy and I love him to pieces! I am SO proud of all he accomplishes by overcoming his obstacles on a daily basis. I am eternally thankful for all the angels God puts in our path who help him, or as I call them, our "team". We have teachers and therapists and nutritionists and doctors and FAMILY and friends...all who are AWESOME and special to us! God has truly blessed us in every way and given us everything we need to help Carson reach his fullest potential. It isn't easy most days. It has taken hard work to get where we are and that will continue. We are up for the challenge!

Happiest of happy birthdays to my wonderful baby boy Carson Allen!!!

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!

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!

My Son Has Autism

Note:  I want to apologize for being such a blog slacker.  The main issue has been that Carson damaged my laptop charger, and since it is the only computer I currently have access to, it is a very daunting task to get it charged up enough to write.  I soon hope to have a new charger and get back to more frequent posting.  Thank you for your patience!

Yes, my son Carson has autism.  You already know that?  Of course you do!  I have already written about it many times!  Why, then, you ask, did I write a blog post with this title?  As time marches on, I delve deeper and deeper into the experience of raising a child with autism.  It has almost been 4 months since diagnosis, so I am still fairly new to all the therapies and information out there.  Forgive me for sounding like such a newbie, but it is a perspective I feel should be shared with others who may be going through the same.  Some realities are only now beginning to hit me.  One of those real moments happened a week or two ago, and it slapped me in the face.  Hard.

I don't like excuses.  Everyone uses them, myself included, but I don't like to, and I don't like when other people do.  I don't like feeling like we need special treatment, but the reality is, sometimes it is needed.  I rarely have issues with Carson when we are out in public.  Usually any tantrums or defiant acts appear to the bystander, upon brief encounter, as typical for a boy his age.  However, Carson is getting bigger.  With his aging appearance comes the expectation of more mature behavior, but because of his difficulties the gap is only widening.  It is becoming more apparent that there is something different about Carson.  I have dreaded this day.

I have read about and been told by some other moms that they keep cards to hand out in public in case they have any problems.  These cards explain a bit about autism and are intended to inform the "well-meaning" strangers who may decide one day to comment about a behavior.  I have read it so many times and wondered if it would ever happen to me.  I never dreamed that I would be one of those people to carry the cards.  I'd never seen one or been given one (except for a fellow mom who showed me hers), but I also don't go up to people I don't know and comment on their parenting skills.  Now I am actually wondering if I should be a card-carrier.  I am beginning to learn that saying "My son has autism" too many times can get pretty old.

I know I said it a few times this particular day, and usually it is only if we run into someone I know as maybe a casual acquaintance, say, through work, or someone I may have gone to school with and haven't seen in a while.  Sometimes I say it when someone asks Carson a question, or if he happens to scream (which fortunately is rare) when someone approaches us and tries to talk.  But on this horrible day of days, it wasn't one of those instances that got to me.  It was something a little simpler.

Carson has a love for opening and closing doors.  If you have ever seen us at Walmart, you probably know this already.  He loves to open and close the freezer or cooler doors.  When he sits in the buggy, it is easy to limit how many times he does this.  Now that he is getting bigger and wants to walk or push the buggy, I am having to learn other ways to limit this behavior without causing a big scene.  Most of the time, so far, I feel like a failure.  Many times my attempts to stop him have ended with a mild screaming fit and Carson falling to his knees on the floor, staying there and refusing to move on with me.  I tried to drag him once, but figured that was a worse idea, so I just wait for him to get over it.  He just sits there and looks at me, which is better than screaming, but still draws a few stares.  But the incident didn't happen at Walmart.  I never have a problem there, so far, with anyone saying something to my face or to Carson.  No, this day we had gone to a small-town store to look for something a little out of the ordinary for Carson's diet.  Unfortunately, this small store had lots of coolers, and only small buggies, too small to restrain Carson.  I let him wander while I shopped, since the store was small enough I could keep my eye on him.  I tried several times to stop him from opening and closing the cooler doors, but to no avail.  And then it happened.  The man working in the store, no doubt probably the manager, walked up to Carson and told him (in a nice tone) "These aren't for playing with."  Ok, I know it doesn't sound like a big deal...but my blood BOILED.  SO many thoughts have gone through my head since that moment.  I wanted to lose my mind!

First of all, I understand that Carson should not open and close the doors so much.  It does cause the compressors to run more, which costs money in electricity.  He was not being rough, so no worries about breaking anything.  And this man has every right to take care of his store, his property.  But first I worried that he must think I'm not watching my child, which equals bad parenting.  I was watching him, and I would much rather him be doing that than getting into things, breaking things, or trying to run out the door.  He was contained, he was safe, and he was occupied.  There is no way this man understood that.  Secondly, I don't get onto other people's children, ever, unless I know them very well and they are doing something that could be harmful or that I know they are not allowed to do.  It was the first time I ever experienced a complete stranger correcting my child without my permission, and I didn't like it.  And I know it won't be the last time.  Lastly, I didn't know how to respond.  I didn't know what to do after that.  I was so angry and I didn't want to take my anger out on anyone, and I was very embarrassed at the same time.  How was I supposed to handle this situation?  I wasn't finished looking for what I needed, and I was fighting the urge to put my stuff down and leave right then out of anger, but I was also trying not to blame this man because he didn't know.  And I honestly don't know if what he did was right or wrong.  I can see it both ways now.  So I did the only thing I knew to do.  I got Carson and tried to keep him with me, which was a huge power struggle.  I ended up having to carry him myself, and since he weighs over 40 pounds, there was no way I could do that for long.  So I gave up and went to check out with what I had already.  But the man was busy helping someone else, so the girl checked me out.  Lucky for him (and me!).  I thought about it, because I didn't want to sound like I was making excuses, but right before I walked out I finally decided to tell the girl (with the man standing right behind her with a customer) to tell the man that I was sorry if that bothered him, but my son has autism and I don't know how to stop him from doing that yet.  And I walked out.  She was really nice and smiled and said something nice I don't remember, but I was red as a beet.  I was so glad to get out of there, and thought, I may never go in that place again.  We will see.

I know to some of you it sounds really simple and maybe a little silly to be so upset about it, but I was.  It still bothers me a little now.  It was a wake-up call to let me know I need to work harder to learn what I am doing with Carson.  It was motivation.  I talked to one of the therapists about it this week, and she gave me a few ideas, most I've already tried.  But a good limitation, like telling him he can only do this so many times and then move on, might work.  I did try that already, but I think I have a better strategy now.  The point is, I need to step it up a notch and start practicing all that I am learning.

The reason I shared this story was because I know there are other people out there who can relate, and there are people out there who need to see things from my perspective.  This man didn't know
Carson has autism, or that this is one of his challenges, or that I have been trying to work on this behavior.  How many times do we wish that other people only knew what was going on?  We only see a snapshot of people we meet in stores or restaurants, we can't know their whole life story or understand what is going on within them at that given moment.  The lady in her pajamas with rollers in her hair may have been just getting ready for bed and had to make an emergency run for baby diapers or something.  The baby that won't stop screaming may have just not had a nap, but it was the only time they could go grocery shopping and there was no one available to watch the baby.  Or the little boy running around that won't listen to his mommy, may just have autism and doesn't know what she is saying, but she has to take him anyway because he needs to learn how to handle it.

I don't want special treatment, I don't want to make excuses, I just want everyone in the world to take a moment and put themselves in other people's shoes before they make judgments.  That's the Jesus in me.  Now I'm thinking about being a card-carrier.  What do you think?

Autism Awareness

As this Autism Awareness Month comes to a close, I want to say that I hope I helped to raise a little awareness in some way.  I have only been involved for a few short weeks, and in that time all I have done is written posts and shared things on facebook.  I hope to become more involved in the future, as making connections is a great way to get information about services and ideas to help in personal situations. 

Carson is still very young and we have no idea what the future may bring for him.  I know whatever that may be, God has a very special plan and purpose for his life.  He has blessed Carson so much already in his short time here, and I am so excited and hopeful for his future!   I know we have many "awareness months" to come, but hopefully one day this will all lead to some kind of cure, whether it is new information about the brain and how to treat or repair it, or the final perfection of gene therapy.  I have read some very informative information about gene therapy in the PKU Newsletter, and it helped me understand what the trials are like and what problems they are facing, with all trials, not just PKU.  Researchers, from what I understand, are having trouble finding a vehicle in which to get the corrected genes into the body without being rejected or causing serious harm.  I believe one day they will find a way, hopefully in Carson's lifetime.

Until then, every April I will be wearing my puzzle pin, writing posts on my blog, and sharing information on facebook about autism.  I will be walking and spending money and raising money to make sure my child is not forgotten and is accepted and hopefully understood.  And every day, not just today, I will fight for him to have the best and most exciting, happy life of any child in the world!

So when you see us in Walmart, or the grocery store, or at school, and Carson is having a bad day, try hard not to judge my parenting skills.  Don't think that I don't discipline my child, teach him right from wrong, or show him how to behave in public.  Don't be offended when you ask him a question and he doesn't answer you, and don't let it hurt your feelings if he screams as soon as you walk up to us.  It is not personal.  Carson is not a bad child.  He loves people.  He has moods just like we do, and sometimes those come in extremely loud packages.  Just know that I am doing everything in my current power to help us through any situation we face, and I am trying my hardest to help him adjust to the world around him so that one day, maybe he can have a better understanding and deal with situations himself.  I am promoting his independence.  I am his mother, and I am SO proud!  And try to remember there are many other mothers out there like me, going through these same things, so think before you speak, or judge, if you do at all.  We just need a little peace and a little uplifting.  Thanks for your patience.

Happy Autism Awareness Month!  And good luck to all you newbies out there, like me.  :)

PKU and Autism, Too

Carson was diagnosed with autism on April 2nd, which happened to be World Autism Awareness Day. Very fitting. For those of you already wondering, there is no known connection between PKU and autism, and even if there was, his PKU is well-managed enough to not cause any significant damage to his brain. I think he is just a genetic Wonder Boy. We already know he is special, now he must be super-special! I would love to see a statistic of how many people in the U.S. have BOTH PKU and autism. I bet it's not many.

I know everyone out there probably has many other questions, so I will try to anticipate some more of those in this first blog post. Also, there will be many changes to come. Changes in our family life and to this blog. I have decided I will be changing the title because it's not just The PKU Life anymore, and hasn't been for a long time, really. Any suggested titles are welcome!

I already answered the first question most people will probably think of or ask, and that is about this being related to PKU, for which the answer given to us by the numerous professionals we have seen is a resounding "NO". They knew we would ask that too, so we didn't have to ask. Some of you may wonder, then,