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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! We forgot about Our Son’s Autism.

Our sons do not have school today so my husband took the day off so that we could finally go see The Freedom Tower and 9/11 Mueseum.

Rewind to the Fall of 2001. My husband and I had been planning an October 2001 wedding for a year. 9/11 came and we considered postponing our nuptials because of the attacks. But we were encouraged to keep the date so that the terrorists wouldn’t win with our matrimonial plans. We kept the date, but several of our guests did not attend our wedding for fear of flying or had relatives killed in the buildings. It was obviously a horrible time in history. I think 9.11.18 was the first year I did not cry in rememberance. Our wedding turned out to be a joyous occasion for everyone. It helped get our minds off of the tragedy of that day.

Today, our older two sons are teenagers. They have learned about 9/11 in school and at home. My youngest son, who is 11, has Autism that is riddled with language and comprehension deficits, so he does not understand why this is such a profoundly meaningful sacred space. He just sees a building…and we forgot- buildings are scary. Oops.

The last time we took a family trip similar in nature was 3 summers ago to Washington, DC. It was a disaster. My youngest son, Cam, had an alarmingly difficult time with the sensory input around him and nowhere to escape. D.C, in the summer, was expected to be a slower tourist period. I feel stupid for not realizing how wrong we would be. Sensory triggers were everywhere. It is a big, hot, loud city with millions of people walking around, enormous buildings, and ceilings as high as the sky. We did our best to soothe Sam, like taking him to one of the many fountains. He’s obsessed with “sprinklers.” That did not calm him.  Eventually, he developed a massive head tic – a major anxiety response to how overwhelming the experience was for him. Our trip ended up being shortened and we left days earlier than planned. When we arrived home, I called a leading psychiatrist in the field of mental health disorders in children with autism, and he was diagnosed with Anxiety Disorder and started medication. The head tic was the icing on the cake with regards to pulling the medication trigger. His anxiety had been showing up in many different forms.

So this morning he has been adamantly opposed to going to NYC. This caused a good 1/2 hour of arguing, then frantic calls to last minute sitters …. but to no avail. We caved and said ok, you can stay home with mommy….yet, we still tried to find back ups so we wouldn’t eat the $500 we spent…..Do we pull the “A” card?

I sat on our bed and tried not to cry. “I wish we could just do normal things like normal families do….” My husband lamented .   We didn’t think this through. We forgot about the autism. Oops.

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As of this moment, my husband bribed Cam, and he agreed to go. And we are all going now.

Pray for us.

(Learn what happened on this day in Part 2) OOPS! Part 2 of: When We Forgot Our Son Has Autism

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Autism, Allergies & Celiac Disease

Three years ago, my youngest son nearly died from ingesting peanut butter at school. None of us knew he had any food allergies. I’m grateful it happened at school because the nurse had an epi-pen and she saved his life.

Days after this trauma, we brought him to an Allergist and we discovered he had countless food and seasonal allergies. My husband and I were already trying to recover from the near death trauma. Seeing his back blow up as seen in this picture caused further shock.

But by early 2018, it was apparent that his health was on the wrong path, despite our knowledge of and treatment of his allergies. His diet became more and more limited. He preferred only carbohydrates. He had frequent headaches and tummy aches and his bowl movements were increasingly sick in nature. He had severe eczema around his eyes, ears and groin area. He had lethargy and severe congestion in his nasal cavity which caused for multiple sinus infections. His left ear was constantly swelling and red in appearance. His cheeks were always red. He complained of ear pain and strange sounds in his ear. He was unable to comprehend what was happening to him. So his anxiety was becoming increasingly worse. He was gaining weight, or, blowing up like a balloon. He was in a fog.

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During his 2018 school year it was clear that comprehension was worsening. He was stagnating in his cognitive development.  5 years below an expected reading level was not acceptable to us. Something was not right on so many levels.

The pediatrician blamed the plethora of symptoms and delayed comprehension on the fact that he has Autism. She blamed his physical problems on poor diet, severe mucus,  headaches and ear pain due to seasonal allergies.

We were not satisfied with these answers. My husband pushed to see a bio-medical nutritionist. I pushed to have him get learning disability evaluations. The blood work ordered by the nutritionist showed celiac disease and severe wheat intolerance. We were told his allergies worsened over the past several years because of the undetectable celiac disease. The weight gain/bloating was from internal inflammation from the celiac.

Learning evaluations showed alarming deficits and disabilities. We found answers because we went rogue. I was on an Island grasping at straws to figure out what the hell was wrong with my son.

Finding answers provided some sense of relief. It helped us understand why his health was going in a frightening direction. We started him on a gluten-free diet immediately, and added many supplements into his diet.  We have seen marked improvements in all of the symptoms. It’s rather astounding. He no longer needs daily allergy medications, his eczema is virtually non-existent. He has more energy, no more headaches and stomach aches.

Additionally, his expressive/receptive language has improved but is still significantly delayed. He is unable to tell us what he just read a paragraph in an elementary level book. So, we are bringing him to all sorts of specialists for that as well.

As we wait for results from additional testing, we remain scared. It is sometimes difficult to have faith and hope. As we wait, I sometimes find myself stuck in anger reflecting on how his pediatrician defaulted to Autism and Allergies as answers to his issues.

“We did not consider a celiac test because your son does not present as a typical celiac kid. He is getting taller and not underweight, so it can’t be that.” claimed the pediatrician after I showed her the 75 pages of blood work results. She scoffed at the blood work I showed her and ordered her own blood work. When the staggering numbers for celiac came back, she back peddled. I ignored her. I was angry.

I realize that my anger will not make things better or move faster. If I get stuck in the anger, I sink into the self blame, too.

I wish time would move faster, so that we knew all the answers and understood how to fully help him.

I am exhausted from the waiting.

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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.

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More About The Importance of Connections

Connection is a key ingredient to raising children on the spectrum. As Brene Brown, renowned Author, has said:

“Connection is the energy that is created between people when they feel seen, heard and valued- when they can give and receive without judgement.”

2006 is around the time I entered the world of autism scared out of my mind.  I was beyond terrified. Rarely did a day pass when I did not have raging anxiety or fear. A memory that is seared into my brain was the day my youngest son was diagnosed with Autism. I will never forget walking out of the doctor’s office holding a million forms and a prescription for Fragile-X Syndrome test. What was missing was a parent to parent support group prescription. I did not realize how much I would need peer to peer support. I had no idea how to raise 3 children, 2 of whom had Autism. I feared for the future. I needed a crystal ball to know my sons would be ok! I felt depressed, alone, and isolated. What I desperately longed for was connection with other moms who had the same amount or more experience in the autism world. I was “green.” I needed an expert level mom! Additionally , at the time I was having babies, social media had not been born.

I am sure those of you who raise an autistic child have had the awful experience of judging looks when your child is having a meltdown in public, making “strange” faces or is twirling while wearing noise cancellation headphones in response to sensory overload. I have been there countless times with both of my Autistic sons. Strangers only see disruptive or strange behavior, they cannot see the “why”. They do not understand. They are unaware of how much you are struggling as a parent, trying to figure out where the meltdown is coming from, how to ease the sensory overload, and how to calm your child.

When my middle son started his special needs pre-K program, I finally began to develop a network of mom friends living a similar life. It was a relief for me when I found these connections. They understood what I was experiencing and why my children were they way they were. I didn’t have to explain. We could just “be” when got together for playdates. We grew to trust each other and be supportive during tough times. We could genuinely celebrate the accomplishments of each other’s children. We never felt judged, because we walk in the same shoes. These mothers became my parenting community that I so desperately needed in the beginning. These connections have made the past eleven years much easier and not so frightening.

I am so grateful for my ever-growing mom/parent community. This community has helped me to get to a place in my life that offers the perspective I wished I had early on. It is perspective fueled with hope and confidence. It has given me the ability to cope with problems.

I look back at a life that I thought would be 100% impossible and see that it was not the case. We have made it through many heartaches. We have witnessed our children overcoming challenges. We see them enduring. We see them enjoying life in their own unique way. A life I thought would be hopeless, has been a world filled with beauty and growth. We have climbed the steepest mountains – sometimes successfully arriving at the top, and sometimes falling back down. I will be honest, I have had my share of tears. But my tears are not just from sadness. Gratitude tears come in abundance. Also, I have learned that projecting into the future is a waste of time. Instead, I parent one day at time. When I do that way, I find tomorrow is easier.

I have overcome and learned so much during this journey so far, but I know I still have A ways to go. What is different today, is that I am not always afraid. I will not let fear dictate my parenting. I trust when I stay connected to my peers, this journey will be easier, and my children will ultimately benefit the most.

 

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Changing Flight Plans

Some of you may know the poem “Welcome to Holland.” For those of you who do not, allow me to explain. Or, if you prefer, you can follow this link to the poem.

Welcome to Holland

“Welcome to Holland,” is a poem written by Emily Kingsley about how it feels to have a child with special needs when you had already prepared for a typical child- like planning a trip to Italy. However, when that day arrives the plane changes its flight plan and lands in Holland, not Italy. “Holland!?” She exclaims. “I didn’t sign up for Holland!” So, she buys manuals for Holland and realizes that it isn’t all that bad, but she knew that she would forever watch everyone in Italy knowing that it was there she was meant to land.

After reading “Welcome to Holland” for the first time, I was brought to tears. I felt an instant connection to the author. She had beautifully articulated what I had just started to feel as I began my anxiety fueled ascent to “Destination Unknown.” For a while, I read and re-read this essay convincing myself that, yes, Holland is so very special, and I need not mourn the fact that our stupid plane changed its flight trajectory, not once, but twice when our third son was also diagnosed with Autism. This poem was instrumental in helping me feel less isolated. Clearly, other parents are out there, wishing they landed in Italy but got Holland instead.

What I came to realize is that our travels would never be exclusive to Holland.

The first time I felt our flight change its course was when my middle son was 6 months old. Like most mothers, I just stared at his face all the time. I remember falling in love with him, just as I did with my first son. I was in awe with the fact that my heart was able to hold so much love. I had wondered if it was even possible to love a second child as much as I loved my first.

As the months went by, I recall being curious about how his eyes would startle wide open and with fixation when I took a picture of him. He seemed oddly obsessed to the camera and its flash. He responded similarly to all things electronic. Overall, his facial expressions showed me a boy receiving the world around him much differently than other children his age. He didn’t babble, point, or turn his head when spoken to. By 14 months, he had only 10 words. So, like a good mom, I had him evaluated and he qualified for speech therapy.

When my son first started speech therapy, I had already done independent research online about my concerns with his development. I was worried. I recall nervously observing the speech therapist as she worked with him. I always hated how she spoke loudly at his face trying to create eye contact. After several visits, I found the courage to inquire about her knowledge of Autism and if she recognized any characteristics similar in my son. She was usually evasive which terrified me. I needed her to say, “No worries, it’s simply a speech delay.” Deep down, hiding in the most secretive places of my soul, I knew we were most likely on our way to a spectrum diagnosis. Until then, I grasped at everything to prove my instincts wrong. I also held him tightly as he slept. I was convinced that my love for him would “cure” him. I was sure my love alone would work. But by morning, I’d see nothing had changed and to keep his speech therapy appointments. I remember being so frightened and anxious. How did we miss landing in Italy? What happened? Why couldn’t we have just landed where everyone else lands? Frankly, it would be so much easier.

Fast forward, thirteen years I have learned that daily new flight plans are our normal. I take off each day on a journey to places known and unknown. Our plane has perfected the art of consistently changing flight plans and riding them out better by the day. Some of the flights have become smoother. Often, we hit way too much turbulence. Some even crash. So far, none have destroyed us. We have survived because we learned to accept the unpredictability of a land in which we did not expect to live.

I think back to when I first read the “Welcome to Holland” essay and want to tell my younger self, “KEEP YOUR SEAT BELT ON AT ALL TIMES!!!” I want to alert her that she will experience so much in many lands. She will not have a life absent of joy, laughter and celebration! And that her tears will be abundant not from sadness alone, but from fierce joy when she sees her sons overcome challenges that come with Autism. Her tears will be the recipe to developing a thicker skin, a softer heart and great ability for compassion and advocacy.

One of the most extraordinary gifts she will receive is witnessing all these newly developed attributes in her sons. She will be astounded by their ability to self advocate and show compassion. I will implore with her that she must always accept Changing Flight Plans even when they exhaust and frustrate her. Acceptance is not only a required practice in each land, but it will help these lands to feel more familiar, more manageable and not so scary. Her acceptance will push aside fear and doubt. She will grow to love raising her children in not just one land but as a world traveler. And her love for them will be the fuel that carries them to each new Kingdom.