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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.

———-

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.