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Parents of Autistic Children: The Importance of Making Connections With The Special Needs Community

Often it is difficult for people to connect with others who are experiencing a life similar to yours.

I hope that by connecting you will less alone and isolated. Parents of children with special needs are often neglected with regards to self care. We forget to take care of ourselves. I believe that when we share our experiences with another person whose life is similar, hope spreads. In my experience, if I am not connecting, I fall apart. For me, it is an absolute necessity to connect with others. I need to know that others feel the way I feel. Otherwise, I feel isolated and become depressed.

I have 3 amazing sons. My oldest is a typical teenager and my younger two have Autism.

I know that you will all be at different places along this life long Autism journey. Some of you may have just started on this path. Others may be many years in. I have eleven years under my belt. I feel like I’m at a place where I feel my head is mostly above water. This, I am grateful for. I have perspective. Now it is a little easier for me to find hope because I have witnessed how far my children have grown. They have overcome many of the challenges that come with Autism. I have seen myself overcome challenges that come with being a parent of children with Autism. But I am realistic. I understand that bumps will always present themselves; some more difficult than others.

I remember when I started this path, I was terrified. I felt that I had been thrown out of space ship and I was just floating through out space not knowing which way was up. One of the many things I had wished for when I was told my sons had Autism, was a prescription for a set of moms, or parents who had many years experience in the world of Autism. These moms could be my crystal ball. They could tell me that everything will work out if you just trust yourself, find support networks, and hold onto hope. But I was too busy drowning. It was difficult to seek out help for me when I was busy trying to figure out how to help my children.

As a mother, I have overcome so much so far during this journey, but I know I still have much too learn. That will come with experience. But those raw emotions – the fear, the anger, the heartache, the grief- that show up after your child is diagnosed- they dissipate over time. I can not promise it will happen for you, but I can tell you it is possible, because it happened for me. Do these difficult emotions show up periodically? Yes, absolutely. But coping gets easier.

So, for now, I hope that by sharing the experiences I have had raising a very neuro-diverse family, it may help you to know that you are not alone.  Connection is the key to help from isolating.

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OOPS! Part 2 of: When We Forgot Our Son Has Autism

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What could have been a huge disappointment today, was not. My son, once again, showed us just how thirsty he is to exist comfortably in this big and often scary world. This morning we decided to give him a push (bribery) so that our family of 5 could all see the Freedom Tower and 9/11 Memorial together.  It would not have been the same if he and I sat at home in his fears while the rest of the family ventured off.

He has autism. Yes, we forgot. Read about how the day began OOPS! We forgot about Our Son’s Autism.

We forgot about the part of him that is nervous and afraid of the things in this world that don’t make sense to him. Those things trigger his anxiety.

We ordered tickets for all 5 of us forgetting about that part of him because when we think of him, we think of him absent of the things that autism makes hard for him. Our son is not autism. He is our lovable, silly, enthusiastic, kind, friendly, social and brave son.

Today, nearly every step he took was laced with worry or uncertainty. But he used the tools he has learned to help soothe himself. He asked questions and reminded us that it was time to go home. “We still have some more fun things to see,” we would respond with hope.

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He needed his yellow headphones and plenty of reinforcement about things he felt or saw. He let us comfort him. In the moments leading up to entering the Observatory Deck, he grabbed my hand (as seen in picture below). Since his gluten free diet, his aversion to touch has diminished a lot. As his mother, the years he would not let me touch him was so painful, but mostly, I was sad that he was unable to have human touch as a means of soothing his anxieties. That is changing for the better.

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The one spot he felt most comfortable was on the observatory deck with his big brothers.

He loved looking at the Statue of Liberty, the boats and bridges. I could tell he was filled with curiosity as he gazed down at the beautiful sites.

I’d like to think that pushing him to go and face his fears was the right thing to do. I hope it was not a traumatizing experience for him. I hope it helped him realize that he can face his fears and survive!

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Today, walking around and exploring this sacred space that was once The Twin Towers, then a “War Zone,” reminded me that no matter how large or small the problem, we all start from “Ground Zero” to overcome what has fallen or is barren. I can not help but make the connection to my journey in recovery from alcoholism.

It took many years, but as a nation, we rebuilt the destruction of 9/11/01. We rebuilt it out of resiliency, determination and courage.

Today, my boy showed me that despite his fears, he is determined to face them. He is my reminder that it is possible to overcome and thrive!

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Bug Battles

Last night I climbed up onto one of the kitchen chairs to kill a stink bug that was lounging on the ceiling. I was behind the 8-ball with this disgusting creature.  My bug fearing son would never know that it crept in to “git him.” He had been fully engaged downstairs on his monkey bars, therefore completely unaware of the deadly predator breaking and entering our home. I was all ready for the fight…..

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Those of you with children on the spectrum know that an extraordinarily severe fear of bugs is a probability. So, I am confident you can understand this predicament.  Our family will go to great lengths to search and destroy that which is tormenting our son. Let me tell you why.

99.9% of the time my youngest is first to spot a bug in the house. He has an unusually acute awareness to when they ambush our home.  His announcement of the emergency is quite pronounced as he exercises his great lung capacity:

“AAAAHHHHH A BUG! A BUUG!!! UUUHHHHHH BUUUUUUUUUUUUUG!!!!!!”

I’m fairly certain neighbors can hear his shrieks. The homes in our neighborhood sit close together. There is no way our next door neighbors’ ears can avoid this fierce audio assault.

Eyes pinched, we wait for our hearing to be restored.  Once normalized,  my husband and I  jump from our trenches in a nano-second and scramble to find a weapon -a magazine or newspaper- and begin our pertinacious hunt. No sooner than preparing our word wielding weapons, we experience further temporary hearing damage with:

“GIT IT MAAAAAAAAAAAHHHHM!! GIT IT!! GIT IT!!!”

His howling fuels our determination. I look at my husband and check for alignment in our purpose. Our efforts will not be in vain. This is our bug hunting script. To the outsider, we are bumbling actors in a sitcom. For my son, this is a horror story.  My husband and I find ourselves tripping over each other, frantically swatting the air hoping contact will be made with the tiny predator.  No such luck. Flys, those sneaky little charlatans, know just where to hide.  Weapons held high, we become statues. In all the years we’ve battled these buggers, I’ve developed strategies to locate them in hiding. I shift my eyes like a ninja while maintaining my static pose.

I wait.

Suddenly, it appears! My well trained eyes follow its escape path from behind a curtain to the window in front of me.

I advance- WHACK!!

“DID YOU GIT IT MOM???!!!!! DID YOU GIT IT???!!!!!” Anxiety is heightening.

“NOT YET, BUT I WILL!” I try to console him as I watch that stinker fly off to his next hideaway.

“I bet it’s laughing at me, “ I brood.

With every misfire, tension swells. Our son continues to shout so we default to our usual reassurances.

“It’s just a bug, honey, it can’t hurt you,” or, “you are bigger than the bug, it’s probably more afraid of YOU!!”

Each time we present these facts, we hope it will finally relax our panicked off spring. But alas, our efforts are futile:  he is convinced he is the main target of this bug, the predator of our Kingdom.

At this point, we are in the most chaotic war zone known to human race. Anarchy!  All hands on deck! Our dog is barking frantically , chasing us around the house.  Our parakeets are fluttering spastically in their cage- feathers and feed shooting out onto my hardwoods. Our other two sons, true to their battle roles, are shouting out commands.

My oldest shouts with encouragement, “It went into the dining room, Dad!”

“I think it flew upstairs, Mom!!” The other quickly chimes in.

But our bug fearing son shoots out demands like machine guns firing in our heads,

“GIT IT GIT IT GIT GIT GIT IT GIT IT!!!!!!!!”

If the planets are aligned, we win our battle in a few minutes. My husband and I release our weapons and breath a sigh of relief. Safety is restored.

Sometimes, we can’t find it anywhere and try to convince (lie to) our son that it flew out the slightly opened deck door. Typically that approach fails,  and he eventually sees the fly emerge from its latest bunker. Our battle resumes.

Worst case scenerio, the crack in the door allows for additional predators to engage in combat and we know we will lose.  This is when we saddle up,  bolt to the family car and head out to the nearest park.

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Last night, much to my chagrin, was a different story. I thought I was smart. I climbed up onto that chair, arched my back (a bit too dramatically) and charged at it that stinker with my trusted bug weapon.

“WHAP!” The stink bug fell to its death leaving behind bits of its corpse and dropped into a small opening that swallowed it into the cavity of the microwave. “AAAAAAHHH! I shout. Not because I killed it, not because it fell into the workings of our cooking appliance. I cried out because I was in pain- I threw out my back.

“Awesome,” I moan.

Today, after taking some Advil, I sit ever so carefully with moist heat on my back and pray that the coffee I just warmed up in the microwave isn’t laced with stink bug guts.

But at least I know I won last nights battle and freed my son from the horror of the ever constant threat to our household.

Winning.