(Some identifying names have been removed from this post)
AUTISM….. What causes this to inflict triplets?
My beautiful boys were born February 17th, 1995 in Anchorage, Alaska. Over the last 16 years, my life has not been fun, but it has been funny at times.
Trakkor, Tanner and Harley Hogan were diagnosed with Autism at the age of 4 by an autism specialist. When given the news, I asked “What do we do?” He replied, “There is no cure, and no known cause.” My heart was broken. Being a mother of 4 daughters, who were bright beyond their years, I was at first mortified. “Now what!” I enrolled the boys in a school for kids with special needs at the age of 4½. They’ve been in schools throughout Anchorage for 12 years.
Many years ago, there were very few cases of autism in Alaska, and no facilities to speak of. I was a single mother of autistic triplets, a daughter in kindergarten, and their half-sisters Jamie, 16, Brittney, 14, and Nicole, 12. I can tell you, life was far from boring!
I slept on the floor in front of the bedroom door of my sons to keep them from coming out in the middle of the night and wreaking havoc. They never slept. They would throw toys at me, sometimes metal cars that would leave bruises and once even a black eye. I had to tape their diapers on, because they would tear them off and smear their poop everywhere! My day consisted of getting them ready and off to school, along with the other children, and then cleaning their room, toys, walls, shampooing carpets and sanitizing everything. I finally had the carpet in their room removed and linoleum floors put in so it would be easier to clean and more hygienic.
Now, on the lighter side, they were happy and very loving to their sisters and me. There were lots of hugs and kisses, eye contact, and the need to be held, loved and played with. This behavior was not consistent with typical autism. They also had an eating disorder called PICA. They would eat batteries, glass, metal, plastic, wood and other non-food items. They would rip everything apart and try to eat it, including their mattresses.
Most everything had to be removed from their room. No curtains, pictures, hangers, and absolutely nothing that could cause harm. I once put a wicker basket in their room for their laundry and by morning, it had been reduced to a pile of tiny twigs. Lesson learned.
As far as their eating habits, they would only eat brown, room temperature foods such as toast, chicken nuggets, fries, steak, pork chops, etc. They would not eat fruits or vegetables so I would make them protein shakes to ensure they got their vitamins.
After finally getting them potty trained at the age of 6, they were beginning to try new foods. That was a plus. No more diapers and better food choices.
In the meantime, we went through chickenpox, a broken femur, one ear infection and a couple of colds. Not bad, considering there are 3 of them!
On a more amusing note, once they got into a gallon of pink paint in the garage, which I was going to use to paint my youngest daughters room, and finger-painted my red van pink, half way up and all the way around! Nice! Then another time, Trakkor got into a bottle of black RITdye that was in the laundry room. He dyed all of the clothes in there, as well as himself. It took 2 weeks for it to wear off his body and face. So for 2 weeks I had 2 little white sons and one black son. Everyone thought it was hilarious, especially my black friends. I actually thought it was funny too! Not so much about my van being pink though!
During Christmas, I had to keep the tree in a play pen, so they could not get to it. One year I set it up by the window, thinking all was well, when I noticed that the lights were not working. I then discovered that they had eaten the bulbs, plugged in mind you; all the way up as far as their little 6 year old bodies could reach. Amazing enough, there were no cuts in their mouths and they never got sick when they practiced this unusual eating habit.
Going back to the beginning, Harley was the first born weighing in at 2lbs, 15 oz. He was in the hospital for the first 6 weeks, coming home at 4lbs. Today, he is 180lbs and 5’8”. Yes, he’s a big boy! Tanner was born second, weighing 3lbs, 12oz, and spent 4 weeks in newborn ICU. Today he is 140lbs, and stands taller and thinner than his brothers. Trakkor, being born last, weighed 3lbs, 15oz and only spent 2 weeks in newborn ICU. He is now 190lbs and 5’10”. Big difference!
Eventually, I found and agency who was willing to work with me and the boys. Care providers were few and far between, but Harley had a great guy working with him, and in that time he thrived. Other than that, it seemed we just floundered around; hoping providers would stick around long enough to make a difference. Then our case manager informed us of a program. After some research, it seemed like a dream come true! The facility sounded wonderful, with promises of swimming pools, dog therapy, horseback riding, nutritional needs and many other things I felt the boys would benefit from. After 8 months of pleading my case, the state of Alaska agreed to send the boys to this facility for treatment. My heart was happy, knowing that they would receive the care and treatment they needed, but I was also very sad that they would be 5,000 miles away and I wouldn’t be able to be close to them every day.
As it turned out, Harley cried to come home every day, so after 9 months at the facility, I brought him home. They had nothing to offer him, and the program wasn’t what they promised. It was basically just another institution. There were a few good things, but no dog therapy, no horseback riding and no nutritional therapy either.
I finally got Tanner home just short of 2 years of him being there. I wanted to bring him home sooner but they refused a medical discharge.
Trakkor still resides at the facility. They will not discharge him without medical transport, since he is a flight risk, which neither the state of Alaska or the facility will pay for.
I was told by this facility that Trakkor would be brought out into the community, but that did not happen. I could bore you with details but I need to make this as brief as possible. Basically, I was deceived. My boys have suffered through inappropriate care while there. Trakkor broke his arm, and had other medical problems that I am now financially responsible for. Tanner, while there, escaped from the facility gates 3 times. The facility is located right next to a major interstate 8 lane highway where he could have been killed, as he does not fully comprehend the dangers of open roads. Please understand that there are some amazing people who work there, but there are also some who are not so great. My daughter Brittney and I witnessed a staff member cursing at a young autistic boy. He was unaware we could hear him or see him. I realized that Tanner may have been treated like this while he was there as well, for after bringing him home, he would stomp around the house cursing and saying things that are not said in my home. It was very discouraging, to say the least. It affected him to the point where he is no longer in my care. He attacked a security guard and a teacher at his school, and was placed in the Alaska Psychiatric Institute (API).
I am so concerned for my boys. They need professional help, but there is nothing in the state of Alaska for them. We parents of special needs children, have only the choice to send them out of state for treatment. We cannot monitor their treatment because we are not there to see what’s happening day to day.
I will not let my boys fall through the cracks, and that is what is happening. My sons are being charged with assault and they don’t even know what that means! We need a facility in Anchorage that can accommodate our children’s needs, where we can see them regularly, monitor their care and progress, and be a part of their learning and treatment. Our children should not be sent away to some other state, where we cannot be a part of their everyday lives. How good can that be? Autism is not a fatal disease! It is a disability that can be maintained with love, support and understanding.
My children will end up in an institution, somewhere out of Alaska, where their mother, father, sisters, brothers, aunts and uncles will never be able to have full contact with them. They will forget us, but we will never forget them. I will fight every day of my life to ensure that one day Alaska will have a full service facility to care for our children who cannot care for themselves. Please hear me, and hear the voices of our children. They don’t want to be sent away, to never see their parents or families. We need to be a part of their lives every day.
Alaska is supposedly one of the richest states in the nation, and yet we have no facility for our disabled children, yet it costs the state millions of dollars to send them out of state for treatment, when we could have one here, in Alaska.
I have not seen my Trakkor in 6 months. But how beautiful is paradise without someone who truly loves you, and cares about what is happening to you?
Can’t anyone hear us? We are hurting, and our children are becoming more disabled than what they were. There are opportunities for our children. Let’s give that opportunity to them. They deserve a chance.
Written by a mother who wonders why…..Tina M. Shelby.
I would also like to add that building a facility would also provide many jobs for Alaskans and decrease our unemployment rate. Submitted by sister, Nicole Johnson