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Ayden's Journey Through The Spectrum

The story of our journey through the spectrum with our 4 year old son.

Processing and Denial

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Man.. Two good days, I can easily convince myself everything is normal. Then normal turns into a nightmare.  My child is miserable and melting.   I am continuously breathing to reset my nervous system to keep from losing it.  My body hurts form the anxiety.  The build up goes on for hours and you know the outcome will happen but you have no idea what to do.  Then normal returns and life is good.

NORMAL is not a valid existence.  Normal comes from months (which turn into years) of tools, conditioning, education which build your confidence as a parent.  When you initially hear moments matter not milestones, your clueless.  But, in time it makes sense.  Moments happen, milestones exist but moments can shatter any milestone.  Moments can make or break months of work.  That is what makes early intervention so important.

My biggest piece of advice to anyone who has concerns for Autism.. GET EDUCATED. Stay devoted and if it is Autism this is the beginning of your journey.  Don’t second guess.  Find others who have experienced the same journey. Stay in what resonates. Don’t compare symptoms, no two kids are the same.  Follow your heart.  VIDEO!!! VIDEO AND MORE VIDEO! Document and journal.  Believe that you CAN do this.

Initially, we started with behavior modification therapy because it’s kind of what we fell into and it helped.  Ayden was so young, I thought “Surely, it can’t hurt” and it has been a learning experience that has enriched my parenting and taught me so much; as well as his counselors and therapist.  There is no exact science to Autism.  There is no handbook, no rules to get through the roughest part… Acceptance and Diagnosis.  But, in these moments is where you gain strength, confidence, support and education.  There will be days were you are so exhausted.  Your brain will HURT from so much information. You fell you will never be able to process all you’ve learned more or less utilize tools you are learning.  But, you WILL! Allow the process to happen in it’s own time.  Realize that you’ve done all you can do or one day.  Don’t worry when the next melt-down will happen.  Live in the MOMENTS.

Milestones will come, once you become more grounded in the moments.  That’s the beauty of Autism.

 

Dissecting

My biggest current battle in the learning curve of parenting an Autistic child.. dissecting what is Autism, normal 4 year old behavior and what is learned behavior.  Giving a child with Autism consequences is A MUST! Knowing when is appropriate..That’s the difficult part.

Tonight, during dinner Ayden gets down from the table and gets under the table and gets real quiet. I’m keeping my eye on him and notice he is licking the wood chairs.  As we were having dinner with people who GET IT, I still wanted to crawl under the table with him and DIE! Now, my thoughts are licking is way better than biting.  So, let him lick. But, during dinner and with friends. I redirect.  Knowing what’s coming. We stall the inevitable and I see the behaviors increasing and know any moment the world is going to crumble. And it does for an hour.  Now, this whole scenario has gone on for about 2 1/2 hours.

When the meltdown is over, we return to our friends and he has shame written all over him. Melting down in front of others has to be hard.  We try our best to avoid it and most of the people left in our life understand and try to be so helpful.  Then, the aggression starts. He’s ANGRY and TIRED! And starts conflict with the other kids.  I hold him as accountable as I would any child. But, my friends… they want to baby him. They call it supportive.  And, I know their intentions are right on target but all those hands and voices coming at my child after a meltdown has to be overwhelming.  But, he pulls it together.  He also accepts his consequences with understanding.  He verbally tells me his limits.  I push them because we can’t live in a box and because sometimes life is normal enough to forget what I’ve learned over the past two months.  And, we get through.  And most invite us back in their home.   Almost everyone I know at this point will tolerate Ayden’s meltdowns in return for his comedic nature, his openness, his funny euphemisms and because underneath it all – He is a HUGE bundle of love.

As a parent of an Autistic Child there is little room for error and lots of room for improvement.  Knowing what falls in each category is the hard part.  Things get boggled.  We feed off each others emotions. A meltdown is an exhausting experience. I have learned to stall them, redirect them but still working on how to get through them with it causing him to lose pieces of me momentarily.  Basically, the most tangible thing that I have is his ability to communicate.  THANK GOD! It can always be worse.

Fighting Your Child’s Battles

Dealing with an ASD diagnosis of my child is one of the most difficult things I have had to endure as a parent. It is instinct to want to protect your child.  ASD therapy goes against everything that is easy in Autism making the initial phases so difficult. You try this and try that.  Knowing that all any of those efforts are just pacifiers.  They are stalling techniques. There are things to avoid but ultimately the battle is His.  Its my purpose to ensure that the battle is won in moments not milestones.  The milestones come if we get through the moments.

Basically, I’m just a parent and he’s just a kid.  A kid who starts the world knowing his deficiencies.  A child who easily can resist attachment to people but crumble over an attachment to a thing.  A child who knows no stranger, yet; can shake off that non stranger stare or verbal comment.  A child who has limitations but is limitless.

Often you will hear people say Autistic kids are great.  I may have heard something similar to Autism is great.  THEY ARE!! They just come with a different set of rules and boundaries.

 

2017 – The Year of Autism

Imagine life where I am living first hand an experience that requires dictation, recording, journaling, WRITING!!! A life with a kid that makes up words.. along with many other things.. Ayden is Autistic.. I’ve said it for a month.. Still not real..

What is real is right here.  A good day.. sometimes a bad day with a few moments that are good.  Either way.  We have a story to tell and excited to approach 2017 with God’s purpose in life which is to understand our story better so we can help others in their journey.

Gigi needs support… We established that across the board.. Who wouldn’t in this situation and that’s OK! So.. the times when we are overwhelmed and everyone is busy with their life and feel forgotten, we can be found here.  When the milestones are reached, when regression is avoided or evident, when we learn new words that fit, find new pieces of our puzzle.  It’ll be here.

So, the one thing we know for Ayden… He is perfect. It is my job to figure out how to teach the world to understand him and teach him to overcome obstacles and be a WINNER! And, along the way..maybe help the world see that Autism isn’t so scary after all..

Hand in Hand

 

10984534_10205370663819416_5483865894453809727_oWhere we are today.  To the world, we have it together.  Personal details are attended to as I watch the clock.  Waiting for Ayden to wake up, knowing his fear will be as real as mine. Yet the one thing that will determine what makes a hard day easy or a easy day hard… Autism.  But, we face the unknown again.  We ask for help, him through me and me through strangers.

There is a difference in making changes and going through a storm.  There is a difference in everything. My difference, our story, our journey.  A month ago I was mad because I blamed others for our confusion. Today, I accept responsibility that I was the one holding us back.  Today, I accept a little more of our truth through the biggest decision I have made in a long time.  Today, I choose to see the beauty in a small meltdown or none it all; or, the beauty of the day ending because it was the worst we had.  Because, it can always be worse.  I could be just walking beside the most special little boy in the world.  Instead, I choose to walk hand in hand.

When your scared to be alone with your child.

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Every newly diagnosed Autistic mom understands.  The fear of being alone with your child.  The scared feelings of watching them fall apart with no recourse to piece them back together except time.  The words you hear them use to express what’s going on inside.  The panic of wondering how long this one will last.

I still am afraid to be alone with Ayden.  We manage, but the fear is real.

Today, I had someone remind me I’m not crazy.  As we are awaiting testing and standing firm on a pro-active approach, I often find myself believing the things others tell me or believe I should be doing.  So, I’m not crazy.. Well, I’d RATHER BE DAMN CRAZY! This is hard.  Exhausting. Rewarding. I can say I truly have a love / hate relationship with Autism. Every extra moment is spent preparing, reading, and education.  I have learned how to get through meltdowns with out me crumbling.  My confidence is building. My vocabulary is building, my mind churning and my heart growing for the love of difference.

I’m not afraid to say there are times I fear being alone with Ayden.  No one understands unless you’ve been there.  I’ve learned to be scared but move past it. Meltdowns HAPPEN!!! People stare when they happen in public.  This changes things and people and that’s ok.  What’s not ok is expecting us to need your opinion, pity or awkward staring.  We don’t need those things. We need you to educate yourself about Autism and understand there are approaches out there that train parents how to guide our ASD population.  Study and know what to do if you see a kid having a meltdown.  Understand that ultimately it’s about safety.  Autistic parents don’t get the luxury of thinking our kids won’t do certain things.  That’s what happens in wandering deaths. We assume Ayden is safe around water because it has never been a focal point for him.  But, Autism takes the ability to assume away from us.  PRO-ACTIVE! For your child or someone else. Get educated about Autism because 1 in 88 kids battle it.

The Bad Days..

14559981_10209596335578569_4009312781149734468_oWhat makes a bad day when you have an autistic soon-to-be 4 year old.. The moment they open their eyes you know. Today will be rough, which leads to tomorrow being worse and the next is HELL.  You avoid it. You pray for it to stop. You watch the stemming and wonder “What will it be this time?”  The trip to Walmart? The phone ringing? The silence? Triggers?  Who has time to figure out triggers when you’re trying to survive a moment in time. But, these are the important parts.  Take note.  It’s coming. Be prepared. And, know that soon you will watch your child crumble to a point they hate living. Breathing hurts, anxiety, panic.. all those are daily life for us.

On a personal level the bad days for him tend to lead me into the realms of “I’m failing”, “I can’t do this.  Meanwhile you go out in the world in your prepared armor.  And IT HAPPENS! As you knew it would.  This child they say socialize, goes in public and shows a behavior that exhibits a three day stay where they store all sizes of straight jackets.   Then, there’s you. The person that feels isolated but told to socialize for your child.  BUT, you knew it would happen and IT DID!  Then you hear whispers, see stares; but, your focus is on comforting your child, which is an impossible task. All aspects of being able to handle this are thrown out the window on the inside but on the outside you preform.

A bad day is when those combined make me watch my beautiful child fall apart to the point that I just have to watch; meanwhile, they you know in that tiny brain is a child that can change the world..  And in the quiet of the night you realize all that God has given us is a child who resists normal.  And, you vow to tackle another day and pray he will continue to communicate and grow.

 

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