Are You Bitter or Better?

Okay, this is your warning.  I am upbeat and positive 99.9% of the time, but there is something out there that just chaps my shorts.  There was a group post talking about people who praised parents of children on the spectrum.  The person had said that God gave them their child because He knew they were strong enough to handle it.  The parent was less than thrilled with this and went on a tirade about it.  For the love of biscuits, can people not just take a compliment?  The person was praising you for being a good parent and strong person.  Say thank you and move on.  People, mostly self-admitted bitter people, were being way too sensitive.  It got to the point of being ugly about what was meant to be an act of encouragement. 

I watched that thread devolve into a self-pity filled, angry pill.  There was a lot of admitted bitterness regarding their children's diagnosis and limitations.  It seemed that any well wisher was not going to be very well received.  This was not one person, but many.  I bit my tongue...nearly in half.   

You have two choices when you face adversity in life.  You can let it make you bitter, or you can allow it to make you better.  Ask yourself which serves your child best?  Which fills you with energy and which drains you?  Is it bitter?  Or better?  It is your choice to make, but I choose to allow his diagnosis to make me better.  Am I happy that he has Autism?  Do his developmental delays have me singing in the aisles at the grocery?  Heck no!  However, he didn't do it. The well wisher that attempts to give me an encouraging verbal pat on the back didn't do it either. 

I am a Christian.  I believe with my whole heart in God's plan for me and my family.  That includes Christian's diagnosis.  I truly believe that God will do great things through him and he will have an amazing life.  Unfortunately, the saying "God doesn't give us more than we can handle" is widely misunderstood.  He doesn't give us more than we can handle together.  We aren't meant to do it alone.  If you're finding yourself biting on a pill of bitterness of your own, reach out.  There are autism support groups all over the Internet and usually local ones as well.  Every child is different, but you never know if there is someone out there going through your exact situation unless you get out there.  Network and you're sure to have at least one person who can give you tips and tricks for managing life on the spectrum roller coaster.

Let's be honest.  There are good days and bad days.  That is true even with children who aren't on the spectrum.  Do I have bad days with my little Spidermonkey?  Absolutely.  I mentally focus on the good though.  That is just how I am built.  We celebrate each new development.  We get loud and clap when he gets it right.  We do a dancey dance and we are silly.  That is just how we roll.  It is what works for us. 

Childhood is meant to be fun, Autism be darned.  We make his learning fun, we make him laugh his way out of meltdowns.  Sometimes it works and sometimes it doesn't.  Like most things in life though, happiness is a choice.  What you focus on is your choice.  Dwell on the successes, let go of the failures.  Hold onto the happy moments and take what information is important from the bad ones and then send them on their way.  I view this path as an adventure I am travelling on with my little fella.  At two and a half, he has been an outstanding guide.  Seeing things through his eyes has been a blessing and a gift.  It has taught me to see details and moments that might have otherwise been missed.

During the Thanksgiving season, I stumbled upon the image above, floating around on Facebook.  Friends, there truly is always, always, always something to be thankful for.  See the good, and be a positive force in the life of your super hero.

~steps off my soapbox and tosses it in the back of the closet, cause if I don't put it away, the spidermonkey will use it to get into the cookies...again~

The Little Toddler Who Could

There is a fine line between understanding limitations and letting them become expectations.  I am guilty of this.  I actually caught myself telling people staring at Christian during one his more curious moments in public that he had Autism.  Yeah, not a proud moment.  How easy is it just toss that out there to explain in this age of widespread Autism diagnoses?  Too easy.

 

My little Spidermonkey starts 3-K in March and I wanted this new adventure to go as smoothly as possible.  One thing I do know is that routines make things run more smoothly.  My idea was to make his day mimic his day at school as closely as possible in preparation.  I wanted to know his nap schedule, eating schedule and start having him do his therapy at his little table and chairs instead of in the kinderchair he is usually strapped into.

I started feeding him at his table instead of his highchair a week prior to implementing the change in his therapy.  All of his therapists were extremely enthusiastic about the idea....but doubtful he could remain seated for sessions that sometimes lasted up to two hours.  Did he ever show them...and me.  Not only did he remain seated or quickly sit back down if prompted, he has rocked his therapy sessions.  Everyone has been amazed with him.  I set out not thinking about it in terms of Autism limitations.  It was a naïve plan.  I honestly didn't know what to expect from him.  How many two-year-olds do you know that can sit in a chair that long?  I surely didn't know any, my two older "normal" children included.  He has proved to be quite the little therapy rockstar and I couldn't be more proud of him.

When Christian transitioned from the baby tub to the shower and big bath, he hated water. He screamed and it was a quick in and out experience. He also had a morbid fear of the ocean. We couldn't even hold him and let the waves wash over our feet. It terrified him and it broke my heart. This past summer, and many showers later, I was shocked to watch this same child nearly drown himself trying to go further and further out into the water during our last beach trip. He was in love with playing in the ocean. He had not an ounce of fear or hesitation in him. A mixed blessing, but I will gladly chase my little beach lover around to see the joy he had on his face. What a difference one year made. I was in tears several times that day. I reclaimed a part of my child from his diagnosis.

From infancy, my son has always cried when a certain friend of mine was around.  Heaven forbid she should try to hold him.  She never cut him any slack though. She eventually began bribing him with food and that had fairly decent success.  She taught him to high-five and that became their thing.  Tonight, he let her hug him.  Chalk up one more up for Team Spidermonkey.

My point in all of this?  Don't limit your child based on what they have or haven't done in the past, what is or isn't "typical" of their diagnosis or what other's opinions of their abilities may be.  They may melt down a thousand times over a hug from a friend only to be on a high-five basis a year later or they may shock you with something unexpected that they can do when no one else thought it was possible.  When Christian was first diagnosed, I felt the need to arm myself with information.  I am not saying that is a bad thing, but it caused me to get caught up in how to raise a child with Autism.  Really, my first focus should be in raising an amazing child.  I had to remind myself that he is not his diagnosis, he is Christian, our Amazing Spidermonkey.  Just remember, you are also raising a superhero.  Anything is possible.

1-2-3 GO!!! - The Importance of Transitioning

Change can be confusing and sometimes even frightening for some children on the spectrum.  I know with my son, he can get extremely focused on his current activity.  That is a blessing and a curse.  He does really well in therapy most days with being attentive to the current task, transitioning to a new one, however, can be tricky.  It all depends on how much he enjoys the current task versus how much interest the new task holds.  Usually, he is given a choice between two different new activities.  This is to develop his pointing communication skill and it also gives him something all toddlers crave...a sense of control. 

One of the things I learned early on was the importance of transitioning in our daily routine.  This can be as simple as singing a song while changing activities, letting them take a toy or other object of interest with him or a verbal cue like 1....2....3....GO!!!  Our Amazing Spidermonkey doesn't always require transitioning, but certain activity changes like getting out of the bathtub nearly always have one to ensure a meltdown free transition.  With the counting method, 1 means it's time to let Mommy get you.  With 2, his focus has shifted from his previous activity to me and he's usually giggling.  Three is when I begin to lift him up and GO! is bringing him up and over the side of the tub.  It almost makes it like a new game.  I use a happy, excited voice like we're setting off for another adventure...in all fairness, we usually are with him.

When leaving a room or the house, taking an item with him usually makes the change a happy one.  This isn't always a toy.  It might be his cup of juice if we are leaving the house.  It might be his bottle of shampoo if he is getting out of the tub.  Just bringing something from the old task to the new seems to soothe the anxiety of the change.  His transitional item of choice at night is his soft blanket.  If he's tired and ready for bed, just putting it on him makes him lay down in his bed, curl up in it and get ready for sleep.  To figure out what might work for your child, first take note of what triggers his transition-based meltdowns.  If it is the loss of an item they aren't supposed to have, try trading for one of their favorite appropriate items.  Again, think outside the box.  This doesn't have to be a toy.  If your child has grabbed the spray cleaner while you were cleaning, give him his own spray bottle of water.  Replacing with a similar yet safe item can re-engage the curiosity that was generated by the first item. 

Just noticing patterns in your child's day and prepping ahead of time can make for fewer meltdowns and a happier mom to boot.  Preempting an issue is always best, but not always possible.  One thing I know is that Christian is going to be an absolute grizzly bear if any one of three things occur:  hunger, thirst or sleepiness.  This is true for most toddlers, but for a child with Autism, they can meltdown to the point of being completely inconsolable.  With therapy, appointments and life in general, we get busy.  Meals get stretched too far, he runs out of milk on an outing...it happens.  We are human.  If you are faced with one of these need-based meltdowns, first fill the need.  Understand though that sometimes they will reject the very thing they truly want.  If this happens, try holding them close and doing slow, gentle compressing squeezes on their arms and legs.  Some children with ASD get a calming benefit from this type of sensory input.  With Christian, sometimes that works and sometimes it makes it worse.  If talking gently, holding them and presenting the needed item does not work, I walk away and leave him in a safe place with the needed item.  At that point, he is on overload and needs to be allowed to have some time with no new input to cool down.  Think of it like a computer that is frozen.  Pressing a button repeatedly is only going to keep it frozen that much longer.  You have to stop, back off, and give them time to catch up.  I love my son, walking away while he is crying breaks my heart, but you have to do what is best to help them calm down. Once he is no longer overloaded, he usually will calm down and approach the needed item on his own terms.

There is another front to be addressed in this as well though. Language barriers can also be extremely instrumental in causing dreaded meltdowns.  In the beginning, I rationalized that Christian didn't need to speak early on, because all of his needs were met.  I thought that he mentally just didn't see the need to talk because he had what he needed, I was half right.  Now, I try to get him to communicate his needs to me.  Instead of immediately refilling his cup when it's empty, I ask him to sign or say "more".  We've also begun to use laminated photos of everyday things he might need or want.  We have images of his cup, cheerios, goldfish snacks, his fruit snacks, Dora, outside, sidewalk chalk, bubbles and (of course) Yo Gabba Gabba!.  I attached magnets to the back and placed them on the refrigerator.  Tonight I took him to the fridge and pointed out all of the magnets and stated what each was represented.  Then he pointed at the picture of his sippy cup and said, "thirsty".  This was HUGE!!!  We've really struggled with purposeful speech.  These last two weeks, he has really started to blossom.  A meaningful word here and there, pointing to the star on the Macy's commercial and saying "star".  Every new word is a tiny little victory in this house...and we celebrate them as if they are each little early Christmas presents.  Celebrate the small things with great joy.  It is contagious.  Your little one will feel your excitement and want to do even more...trust me.

Allow me to introduce you...

This is our Amazing Spidermonkey.

He is ours, unlike any other.

As you cannot compare two children, this is even more the case in children with Autism.

I am not an expert on the topic of Autism by any stretch of the imagination. On the contrary, I am a beginner on this path. I am still learning about what his diagnosis means in general and discovering daily what it means to him. This is a place where I will share our journey as it unfolds.  My hope is that some of it might help others out there raising their own pint-sized superhero.

Like other children, Christian's first words around 6-7 months were "mama", "dada", "bubba" & "lala", the members of his family.  He toyed with them for a bit and then just after he turned a year old, it all stopped.  No speech.  Not being familiar at all with autism, I thought his delay was from being at home with me instead of being around other little children daily.  I sang to him, worked with him, and loved him.  He smiled and laughed, but still, no speech. 

At his 18 month check-up, we got our first indication of a problem.  He showed pre-indications of autism from the results of a checklist.  Again, I thought it was just a delay issue, no worries.  Every child develops at their own pace, right? 

In October of 2011, he began speech and play therapy and slowly things began to come together.  I watched the therapists as they worked with him and did my own "sessions" with him throughout the day on his off days.  I molded my behaviour and interactions with him to be fun yet purposeful.  As the year progressed, he began to say words and play with toys appropriately, well mostly appropriately...lol.  He could point to and say circle, triangle, oval...  While his vocabulary expanded, purposeful speech was very slow to develop.  What has not been slow to develop is his ability to use furniture to get into things he's not supposed to, his ninja-like stealth in stealing every toothbrush in the house on a daily basis, the ability to take his bed and play table apart and his ability to hide buried treasure in his vent.

On July 12, 2012, the psychiatrist came out from the CDSA to evaluate Christian and find out what additional services he might need.  The man looked at me after going over the test results and said, "You know what this means don't you?".  Of course, I said no.  Again, my only thought in the matter was that he had developmental delays.  Worst-case, he was just a little slower than other kids his age.  He then said one single word, like I should have known it all along, "Autism.  He's autistic."  I won't lie, I cried when he was diagnosed.  This mega-researching mom knew very little about Autism.  What I did know was that there is no cure.  That was devastating to me.

That day, I worried about his ability to love, his ability to learn and his ability to have all the joy this life holds.  I was in the middle of mourning the loss of his "normal" life when I gave myself a mental boot in the backside.  He already did love, he had a huge baby crush on Mary Poppins.  He squealed with joy every time he saw her.  He regularly came and loved on me and cuddled with me.  He had already proven he could learn.  He went from no speech at all to 50+ words in less than a year.  He already had joy.  Nothing can replace the sweet smile on his face when we repeat the words he says and he knows that we "get" him.  That mental "aha!" moment was all I needed to remember that he was the same sweet, loving little boy that he had been the day before.  With the determination and hard work of his family standing behind him, he will have an amazing life. 

Two weeks ago, we began ABA therapy increasing his therapy to a total of six hours each week.  ABA is an entirely different creature from speech and play therapy.  It is very behavior centered.  I will admit, I didn't really get it during the first several sessions.  Today, I got it.  I saw the results of the seemingly trivial things they've been doing begin to surface.  ABA is very therapist driven and parents are encouraged to be inactive observers.  After a year of hands-on speech and play therapy, this was so foreign to me.  I was so used to diving right in and helping to reinforce with the therapist.  I see though how it truly is a one-on-one therapy.  Every little action or reaction from the therapist has a purpose. 

While we've had a little over a year of therapy, we really are at the beginning of our journey of understanding what Autism means to him, for now.  My goal, as any parent probably would agree, is to get him to a point where autism isn't a struggle for him, but a strength. 

A few things about me and this blog.

I am a research fanatic.

I am like a blood hound when it comes to searching out facts for the important decisions, events and purchases in life. This is especially true when it comes to anything involving my children. Sometimes I will share what I've learned by trial and error that works for him. If it is a resource, process or fact, I will do my best to ensure that I provide the best information available. However, this isn't meant to be the end-all, be-all how-to guide for autism. Do your research, try things and see what works for you. If you have tips and tricks, please feel free to share!

In our home, we all work together with our Spidermonkey to help him grow and enjoy his life with us mere mortals.  We aren't perfect, we falter at times, but we are a team.  This is our story, our lives.  We are a single parent household with four siblings, one of which just happens to have super powers.