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!

The Forgotten One

Maggie Amelia, now my middle child, is not necessarily your typical "middle child".  Oh, she is dramatic, and loud at times, and loves attention, as most kids do, but she is a middle child under extraordinary circumstances.  Maggie is unique in many ways, but most notably under genetic conditions in our family.  Her story does seem to get lost in Our PKU Life and our Autism Awareness business, since she is the only one of the three who is fortunate not to bear one of those burdens.  However, Maggie has her own cross to bear, which is that she was born with a clubfoot.  While this blog is so busy being dedicated to posts about PKU and autism, clubfoot gets mentioned so much less.  My best explanation for this is that, while it is a huge issue, it is not always a daily issue. I talk about it less.  I probably think about it less.  I don't have to plan a whole day around Maggie's foot every day, nor do I have to plan every meal around her foot, three times a day.  So yes, it does receive less attention on a daily basis.  But don't let that sway you to believe that Maggie's foot problem is a non-issue, or that I don't think about it, pray about it, and still worry about it some every day.  It is a huge issue.  Maggie's foot has to be monitored as she grows, while she is a child, and actions need to be taken from time to time to make sure it does not turn back, or relapse, to try and prevent it from causing her problems the rest of her life.  Sometimes this involves doctor appointments, wearing a boot or cast, having surgery, or doing therapy.  Her right foot will never be the same as her left foot.  Her right leg will never be the same as her left.  One day it may cause her pain, but for now it does not.  It is our job as her parents to make the right decisions regarding the treatment of her foot and to take care of her the best way we know how to ensure she has the best quality of life possible.  So yeah, it's a big deal.

Maggie's clubfoot is front-and-center again right now because she recently had surgery to stretch her tendons.  I don't feel like we were prepared enough for the event, considering the last time she had this procedure done, she was 9 months old, and we went home the same day with her crawling on the floor trying to play, despite her leg cast.  This time was different.  I was expecting to go home, while knowing the doctor was exploring all the tendons in her foot to see if more needed stretching (last time he only stretched the Achilles tendon).  As it turned out, he did stretch all of those major tendons, which put her in a long-leg cast, bigger than we were prepared for.  And we had to spend the night, for which we also were not prepared.  Marty and I brought no clothes, no toiletries, nothing.  Thankfully, we did pack things we needed for Maggie.  I at least always try to have the kids prepared for anything!  None of us were happy about spending the night in the hospital, but Children's Hospital was wonderful.  At least we were in an awesome place with awesome people caring for us.  Everything went smoothly, and Maggie handled it all like a boss, like the princess she is. 

So sweet, mostly easy-going, even minimal whining!  She seemed to only experience pain when she wiggled her toes, and then it was not even enough to bother her.  I am beyond thankful for how well she did and is doing.  I hope that the end result of this procedure is as it should be.  We want a wider range of motion and flexibility in that foot that will allow her to bend it further and to walk with her heel on the floor instead of on her toes.  I can't wait to see how it turns out when this part is over.  She is in her second cast, and the doctor stated at her last appointment that her foot movement and flexibility looked good.  She has a shoe to put over it so she can walk in it, and she is of course doing almost everything she normally does: dancing, climbing the stairs, etc.  Next week she gets this last cast removed and she will be free, finally, after six weeks!  After that she may wear a boot but should be free-roaming most of the time.  She may need some physical therapy as well.


 

 

 

Maggie's current cast
 

Maggie's second cast after first tenotomy procedure
at 9 months old

A Look Back

Just look at how long it has been since this has been an "issue". TWO YEARS.  That should tell you
why it sometimes seems "forgotten".  When Maggie was born, it was a lot to take in.  We were in the midst of having Carson tested for autism, and we already knew about the possibility of clubfoot thanks to ultrasound, so we were trying to prepare ourselves for that, too. Those were very trying times for our family.  After she was born, Maggie wore a cast on her leg that was changed every 2 weeks, up until she was 5 months old. 

Baby Maggie's clubfoot before treatment

After that she had to sleep in a brace, but during the day, she was free!  At her 9 month orthopedic checkup, we were referred to a specialist because her foot was relapsing, beginning to turn back inward.  She had her first tenotomy, a surgical stretching of the Achilles tendon, and was in a leg cast again for a month, just when she had been learning to walk.  After the cast was removed, she had to wear the Ponsetti shoes (with a bar in between) for a while, then eventually just at night.  Soon she outgrew those and just slept in shoes.  Then she was free again... Until last fall.  At her checkup, after having a big growth spurt, her foot was relapsing again.  Her tendons just won't stretch out as she gets taller.  The doctor recommended another tenotomy and to also examine the other tendons in her foot.  So, again, here we are 2 years later in another leg cast.  I really hope this is the last time, but I know it is always possible we could have to do it again.  Maybe even a few times.  I am thankful she has a very credible, experienced, and brilliant doctor who is a perfectionist (so I've heard).  I am also grateful for our amazing family who helps us out with all our children and everything we need, and for our wonderful friends and family who offer support and prayers.  We are so blessed to be surrounded by so many great people in our lives.

All About Maggie Amelia

AKA: The Drama Queen or Princess Maggie (even though she proclaims "No, I am MAGGIE!")
Strangely enough, she is a very girly-girl!  This is somewhat foreign to me, because I have never been a very girly-girl or liked frilly things.  Maggie loves anything pink or purple, though I think purple is her favorite, like Mommy!  She loves Disney Princesses, of course.  She used to think Princess Sophia, of Disney Jr.'s Sophia the First, was really her.  She dressed like her for Halloween and has already requested a Sophia-themed birthday party next month.  They really do favor!  She LOVES shoes (already?!) and during winter she will not be seen without a pair of boots.  She developed a passion for lip gloss (I dread the makeup!), but had to be stopped due to eating it, smearing it on walls, etc.  Her best friend in the world right now is her big brother Carson.  She will go anywhere he goes and do anything he does.  They love to play games, video games, and watch movies together during these long winter months. During warmer weather, they love to play outside together, riding the Gator, riding their tricycles/bicycles, playing on the swingset, digging in the dirt, riding the tractor, or feeding the cows.  So she is not ALL girly!  Maggie is learning how to be a good big sister to Allison, and I am sure they will be best friends too, when Allison gets bigger. 

Maggie loves to help, no matter what it is, she wants to do it for us.  She loves to help me with laundry and is now showing an interest in cooking.  She is also in a funny language stage, where trying to make herself understood can be both frustrating and insanely hilarious!  For example, the remote is the "gamote", "Donald Duck food", as it turns out, is McDonald's, and the "Nurse Movie" is apparently The Smurfs!  She also has to narrate everything we do, and is starting to ask "Why?"  What a fun stage!  Carson is going through that now too, so we have a double dose!  She picks up so much from him, but I know that she is good for him too.  Maggie is a very sweet and sensitive child.  She cries very easily, like she just got her heart broken, no matter what it is.  She seems to be so tender-hearted and cares about other people.  She is so mature for her age, and she is not even three years old yet!  I love how gentle and kind she can be, and I hope she will always retain that part of her personality.  On the flip side of that, she also likes to aggravate.  She picks at Carson sometimes, just to get him riled up.  And she will just giggle and giggle about it!  She has the cutest, most infectious, most mischievous giggle!  This girl loves to have fun. 

I think Maggie might be my performer.  Even though she gets shy around other people at first, she eventually warms up.  She is constantly singing and acting out parts, not only of movies and TV shows, but also of games on the iPad!  And she is such a diva!  If she is trying to sing and someone tries to sing with her, she has a fit!  That girl is a soloist!  I have said as of late that she just might be an actress.  Combine her drama, her diva attitude, her love for music and dance, and her ability to mimic every motion, word, note, and expression, and we have ourselves a professional performing artist!  Not only is she girly, and beautiful, and fun-loving, but she is also very intelligent.  She is very similar to Carson.  She knew her alphabet very early, she talked very early (unlike Carson), she became mobile very early, and she just knows so much.  She loves books and is always wanting someone to read to her.  She has been able to play games on the computer and iPad (and my phone!) for a long time.  It amazes me how quickly kids can learn these things!  She may not have learned some things as soon as her brother did, but she did other things sooner, and is very close to where he was at her age.  I cannot wait to see what and how quickly she learns when she starts school.

After I first began writing this post, several months ago, I attended a Wednesday night Bible study by our brand new pastor in which he talked about David.  We were reading the passages about how David was chosen by God.  The preacher referred to David as "The Forgotten One" and I almost fell in the floor!  I had already begun this post with this title!  Just like David, Maggie is my small one, my runt, because she had trouble growing as a baby, and is still small, skinny for her age now.  Like David, Maggie does not have all the same pomp and circumstance as her siblings, and although loud at times, she can be meek and shy around others.  But this tiny child, like David, was born for great things.  God chose her to be here for a reason, with her own giant to face,
and I look forward to watching her grow up and find her path.  I hope I can help her and teach her well along the way.  I want her to know that facing adversity, like David did, can reveal great character, and build a servant of the Lord who can help others along the way.  God bless my sweet angel!