janik-family-needs-help — Janik is going to be 9 years old on Nov 17 but he is still non-verbal. Since he is now older his needs are greater and that brings a lot of frustration to his and our lives as he cannot express what he wants.
His self injury increased and so did his aggression. He is still no able to play with his peers or his siblings and therefore has no friends. He is in school where he has special aide but academically he is way behind compared to the other children of his age.
Even though Janik is going to be 9 years old he is still not sleeping at night. He has hard time falling asleep sometimes it takes 2 hours for him to fall asleep and then he gets up early in the morning around 4 o’clock.
As you may imagine not having enough sleep contributes to him being overtired during the day and that means more temper tantrum. Sometimes we try everything possible but it is very hard to calm him down.
Because of his crying at bedtime my other children go to bed late and are tired the next morning when it is time for them to wake up for school. This may not seem as a big concern but if you going thru this day after day you feel exhausted.
Janik can’t still eat on his own. He has to be spoon fed and because of his sensory issues he only eats certain kind of food and the food has to be minced otherwise he won’t eat it. It takes extra time and effort and money to keep up with his diet.
Janik has a lot of auditory processing issues. Because of that he is making weird noises and is quiet hyperactive. It is very hard for us as a family to go for any kind of trip. Usually there has to be one person who has to stay at home to watch after Janik. This greatly influences our family as a unit. There is very little relationship between Janik and his siblings as it is very hard to engage Janik into any kind of game or play. Therefore my other two children find it very difficult to interact with Janik. Janik is locked up in autistic world and it is very hard to pull him out. This is very scary as he is getting older and older and our hopes of him getting better smaller and smaller.
Janik has to be constantly watched. He does not know the difference between right and wrong. We had an episode when Janik ran out of our front yard and ran across the street into our neighbors’ house. At school he ran away from the school property and ran across the street to someone’s back yard. It took 2 staff to be able to catch him. Since he is very hyperactive it is very hard to keep up with him. His special aid has been off on short disability leave since the first week the school started as there was an incident when she tried to catch Janik but hurt herself. We have 3-4 locks installed on each door in the house to prevent him from running away. Janik still has accidents where he smears feces all over and bed wetting is also a problem. As you can see our lives are full of stress and all of us are getting exhausted. We love our son dearly but life with autism is a struggle every day.
We have tried many, many treatments but stem cells were the only thing that showed any kind of improvement for him. However due to the cost of the treatment we keep postponing it further and further. As you know we got very unfortunate last time where roof on our house got badly damaged and we had to replace it so we lost the money for Janik’s stem cells.
It is hard to describe what is happening in our family just in one story but from the words about you can imagine it is not easy.
This is my son’s story and our family’s story.
Love to all the family
janik-family-needs-help.