Monthly Archives: July 2011
I have been meaning to write about this for some time now. A question on twitter got me thinking about the topic again.
Newly Diagnosed What Now?
When Adrian was diagnosed last year we knew it was coming, but I still felt miserable!! What next I asked the psychologist who then referred us for Occupational Therapy (O/T) and highly suggested that we start a sensory diet. I stupidly asked him if we need to change his food diet. Then he explained to me what a sensory diet is and I felt like a complete ass!! A sensory diet is movements that help your child feel their surroundings, release tension, focus, avoid a meltdown, and several other things. Our personal favorites are jumping and rolling. Adrian uses a tangled jr. Which is a type of fidget to focus. He is also an obsessive chewer so he has an assortment of oral motor aides.
Next we were told about a brushing program. Brushing is a tool used to help children with sensory issues get used to touch. We also used a neoprene vest and a piece of fabric that I call the body sock. It is material like what is used for ace bandages. I was told that any pressure input would help Adrian feel his body and also calm him. It worked and I was surprised.
Adrian spent four months in Occupational Therapy outside of school. He had been getting Occupational Therapy in school for three year when he was diagnosed. He still receives it now during school. He went twice a week and we saw a lot of change in him during those 16 weeks.
Before he had a hard time with waiting. Waiting for any period of time was very difficult for him and made him angry. He would slap people and kick and bite and scream. With the techniques his therapist taught us we were able to calm him before it escalated. He still has meltdowns every once in awhile but they are no where near as bad as they used to be.
Besides therapy I read. Books articles. I went to Autism Speaks.org and created a profile to connect with other parents. I downloaded an AutismSpeaks 100 day kit. I asked Adrian’s Special Education teacher questions. I asked other parents of children with Autism questions and I joined my local support group.
That time after Adrian’s diagnosis was probably the worst time of my life, but it got better through reading and chatting and therapy for Adrian we managed to get to a good place and I did not feel depressed or alone anymore.
We eventually tried PECS and an iPod touch to make it easier for Adrian to communicate.
These have been the best books for me:
Early intervention and Autism: By James Ball
Ten Things Every Child Wishes You Knew by Ellen Notbohm
Sensory Smarts By Kathleen A. Chara and Paul j. Chara, Jr.
I have also read Jenny McCarthy’s Louder Than Words
Toilet training for individuals with autism and other developmental issues by Maria Wheeler
Many books by Temple Grandin.
Here are some helpful websites:
For about three weeks now I have been following the story of a little girl in Canada who was taken from her dad. The little girl is Ayn and she is Autistic. On June 12 she went missing from her backyard. She was found three hours later two houses down playing in her neighbors back yard. Then Four days later The Ministry of Children and Family Development came to take Ayn. Their argument being that because her father is a single parent to her and her two brothers one of whom is also Autistic they would “lighten his load” by taking his daughter. His parenting skills have not been called into question nor has he been proven unfit as a parent. It seems apparent that because his child wandered and cops were called they came and took his child. This could happen to any family of a wandering autistic child anywhere and it further proof that either law enforcement and protection agencies no nothing about how common wandering is or they just do not care.
What I can not understand is how they took away one of his children who has Autism but not the other? If they were that concerned about his children’s safety and had cause to remove any of his children wouldn’t they have taken all of them? This seems to be the case whenever I read about children being removed from the home in the states. If they have cause or even when there is not cause all children are removed not just one. Now the boys and their dad have to be separated from Ayn for no apparent reason other than she wanders. I can not even imagine the hell that little girl is going through being in a strange place separated from every one she knows and loves for reasons no one understands. Her brothers and father who I am sure cry for her and miss her every single day. There is no excuse for separating a loving and caring family. I am urging everyone to sign the petition and join the Facebook group. Please show your support. Every signature counts and you’ll be helping to make a family whole again 🙂
This is also the petition to bring her home:
My name is Derek I am a single father of three wonderful young children, aged 9, 10 and 11; my youngest two have both been diagnosed with severe autism. Though a constant and challenging struggle, I have done my best to protect and nurture them, as I love them so much and have dedicated my life to their achievement of happiness. My youngest child is a bright and beautiful little spitfire named Ayn. She has and is blossoming so well here at home and has come so far to overcome her obvious disability, she does however continue to struggle and outburst when in other environments, particularly at school. Ayn is naive and unaware of the dangers that exist in the world at large, so when on Sunday June 12th she escaped the backyard we were very worried for her safety. With each passing moment the likelihood that something terrible had happened increased, as Ayn should stand out from other children easily and should have been quickly spotted. Fortunately Ayn was discovered two doors down playing in a neighbours backyard, the neighbour had taken an afternoon nap which provided Ayn with the ability to play undisturbed. The challenges I have faced in caring for my daughter have been encompassing and life altering, these challenges are very dynamic and new challenges arise as fast as the old one depart. Now with her discovery of the neighbours nearby trampoline and pool, she will undoubtedly seek to return there, vigilance will be required to face this new found challenge, but it is one which I must now face just as I have with each prior challenge and as i would have to with our future challenges as well. As it stands today I may never get that opportunity. On the morning of June 16th two workers from CPS arrived at my home to request that I “voluntarily” give Ayn over to them (she was at school at the time), if I refused they would simply coercively remove her. There should be no illusions here when someone approaches you and says “give me your child or i’m taking her” you should not pretend that any such choice would be done “voluntarily”. Within hours of her removal Ayn had hospitalized and drugged with powerful neuroleptics, one of which at double the maximum daily dose. Her whereabouts has been concealed from me, due to me refusing to sign the voluntary agreement. And I will not be given the opportunity to argue before a judge as per why this was a wrongful removal for months. After twelve days of hospitalization, in which the hospital noted “no bruises or evidence of physical abuse and her body status showed no evidence of neglect” , and “Initially there was some suspicion of ADHD along with autistic aggression, but this dissipated as Ayn improved…”. The hospital insisted on discharging her (june 28th), she is now in foster care awaiting further hospitalization as the Ministry has waitlisted Ayn for a longer term residential based psychiatric assessment. My little girl is autistic, she does not require a psychiatric assessment, I am aware that she does not understand the dangers that lurk, I love her and I protect her, when Ayn has a tantrum at school it is me they either call in to calm her or send her home to, when she is injured it is to me whom she turns because she “needs a bandage”. The greatest successes this little girl has had were nurtured in the home, she loves it here, she loves her brothers and she loves her Dad, It is my firm belief that if our system of child protection has reached a point where a happy thriving child who was not abused and in no need of medicating, can be coercively removed from their family, forcibly medicated within hours, denied access to that family punitively, and the family is given no redress for months potentially years; then we are indeed facing a systemic problem. A problem which unfortunately is not confined to my city or province, nor even my country, for these acts are playing out around the world. Please help me get my little girl back and to address this issue in such a way that it never affects another family again.
I would be forever in your debt,
My son is a Nighttime Terror. Last night while my daughter was asleep my son was in the hallway screaming and yelling that he did not want to go to bed. Since school let out on June 14 he has been pushing my buttons and making nighttime very unpleasant.
Last night he woke up his his sister who could not get back to sleep. Until 2 am. Well after Adrian fell asleep. If the kids are not asleep I do not sleep. There are too many things to worry about already. I don’t need to be worried about what they’ll do if I’m asleep while their awake. This causes everyone to sleep in. No matter how late I set my alarm for I never seem to get up when it goes off. If I do I seem to drift off again. I am always awake before the kids though who would sleep till noon if I let them. Read the rest of this entry
An Important topic for any parent with a Special Needs Child. We do all we can to make sure our son does not wander but I can not help feeling that it’s never enough.