So now I am a sandwich carer. It is a new term to me but means as well as caring for my two sons with autism, I support my mother in law who has dementia.
Her illness has been sudden,. She lies on the sofa. This time last year she was out and about engaging with the world. I feel as if I am on the shore watching her swim off to uncharted territory. I wish I had a rope to bring her back. The nan who gave me so much support when the boys were younger. Instead she asks, “How do I know you Sandra?.” I answer with a tear in my eye.
She cared for her elderly parents and husband. She deserves a rest but dementia is cruel. She only has a son so I try my best to help. To be honest I feel squished like a sandwich filling. I have my boys to care for. It is awful to see someone you care for become so dependent. A good friend said to me that they thought autism was difficult until they encountered dementia and now I understand.
The next year will be a challenge. I have a few battles to fight but my mother in law (even though she is not) wiĺl be given all the help I have the strength to give. I know my boundaries but this situation is impacting on me already. I wish I could do more.
The historian Barbara Hepworth described caring S being carried out by mostly exhausted women and she is right but we do what we do because we are kind and with love but how long can we go on?
Much love to you all and will post more positive blogs in 2017. Take care and lots of love to my fellow carers.
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So yesterday I wrote my first blog for some time about autism and the impact it has on children’s lives. I have to write again about early intervention and the hope it offers parents or does it? Most important is the impact it has on young children with autism.
I have two sons with autism. My eldest is probably more severely affected but only got a formal diagnosis from Christopher Gillberg when he was nine. Callybally was more fortunate. When he was a baby I was used to Ls behavior, as a parent I adapted to how to support him. Callybally’s behavior was just normal to me. With two children under the age of five I just did what I could. We had support from our local special needs department the Panda Centre. I went to a group who offered baby massage. Looking back I should have been more aware that he hated it so much. He needed being held tightly but he was my blue eyed wee baby. L his older brother had so many physical and social issues that I had enough on my plate.
He went to a review at The Panda Centre and I thought he would be signed off. Instead he went from radiator to radiator banging his head. Its okay I told the doctor, he does this when he was anxious. He looked at me. “I think he has autism”. I died inside. The concerns were followed up though. He had super support from an amazing nursery and primary school. My Callybally has done so well. He has anxiety, difficulty sleeping and lots of other issues autism and adolescence bring to the table but he had a great start. It was age five he received a formal diagnosis.
So I believe in early intervention. Yesterday I watched a television article about autism and “trained” parents. These words were being used not only by academics but a national autism charity. I object to that terminology. We are not trained but adapt to our children’s needs. I attended a Hanen “More Than Words course which so helped me but I still reiterate the most I have learned is from meeting other parents.
This study is of 151 children most of whom the researcher says were non verbal. After all how many children receive a diagnosis of autism aged two? What about those children who like my son received great nursery support and though he still has autism has progressed so much. I am concerned about the use of the word .
Autism parents are all , I have learned so much from my carer friends. Again I object to the language used when I believe all parents of a child with autism are super. We advocate for our children, fight battles for them. Going on a course does not make you a super parent a more aware one of course. The more knowledge you have the better.
I worry about the implications, especially in the present political climate. Parents are already being asked to attend Triple P classes for children with undiagnosed issues. Am sad to say but I can imagine a time in the future when during completing a DLA or PIP form the question is asked about a parents attendance at training to understand their child’s needs. Like Type 2 diabetes, will the severity of a child’s autism be blamed on a parent. I hope so but I worry.
I love my boys so much. They have made me a better person. The support I have received has created a scaffold that supports us. With cuts to services I know many families are not so lucky. Early Intervention does not to be named it should be there for all children despite having a diagnosis or not. Sending much love to all the autism parents I know. You are all super. Never change. Change the system though even if it is one child at a time others will follow in their footsteps. I wish to all living with autism a cloak of steel. You are a super person.
This is not the language I would use to describe my beautiful boys. It was used yesterday by an educational psychologist to describe Callybally. He has transitioned to High School from an autism base in a small school to High school. From me as his mum I can see he has lost some of his sparkle. Moving from a base class of six to being expected to attend a class of 30 albeit with support has taken its toll.
We try to support him at home with plenty of down times, routines and boundaries but it is terrible to see your child suffer. The title of this article is from the mouth of an educational psychologist. Cally is so bright. He came into the meeting and talked about muskets he has been learning about in history. (Am a pacifist by the way). For those of you on FB who follow “The wisdom of Callybally” know he is a deep thinker and is always thinking outside the box.
He is a lucky boy with his placement and I know he is well supported but he is falling through the gaps. I see so much potential in him, so much original thoughts but I fear the education system will stamp him out of it. The psychologist was at pains to describe how great the special needs system is in our Local Authority but we have young people like Callybally who they can’t meet his needs due to his autism and other conditions but they say he is too bright for special needs. I felt a bit blackmailed when he said that young people in the secondary school of a school my other son attends learn p1 at secondary level. I disputed this but the answer was do you want your child to be part of this peer group? I felt I was being emotionally blackmailed.
Anyhow my concerns are always about my children. When I arrived for the meeting he had been sleeping. This has an adverse impact on his routine. They have adapted the curriculum and will be monitoring what happens. School is stressful for children with ASN but why should they be described as square pegs expected to fit into square holes not round ones for a change.
First blog for a while but I will be blogging more. Apologies for the moan but I know most of you will understand. No more square or round pegs just a better education system that fits around our childrens’ need and is individualized. That is all I want for both of my sons.