That is exactly how I feel at this precise moment in time...... bereft! My boys have gone back to school after a 6 week break. Jason loaded them into the car and off they went.
Joe was struggling with his worries because the teacher he had last year was as much use as a chocolate fireguard! She did not challenge the children at all. This year, he is having a young male teacher who is strict and will be preparing them for High School next year. He struggles with school because although he has not been diagnosed as autistic, he presents many characteristics of the spectrum.
Harry on the other hand is autistic. He was worried because he is struggling to read and write. He asked me this morning if he would be allowed to go to high school if he couldn't read or write and would his support teacher go with him? It is three years off yet!!!
As a parent of children with special needs, my heart bleeds for them. School is difficult for any child but for one who had communication problems (and I mean that broadly) and sensory difficulties, school is a hell on earth. To accomplish one piece of work takes 100% more effort than it does for peers, this is why they get so tired and so angry with school and nobody but me seems to understand or care.
Communication affects every aspect of ones life from forming friendships, maintaining friendships, expressing oneself.... the list goes on and on. Its not just verbal. How frustrating to be expected to understand everything and yet not. Imagine you are in a foreign country with their own language and customs....... just think about it for a moment........ THAT is what it is like for an autistic child every single day of their lives.
So as well as chemo this week, I am going to have to deal with "melt downs". The term is used when the child is so tired, so frustrated, so confused, so over loaded that they have tantrums similar to those of a toddler. I will have to be ready to restrain, I will have to prepare the house to make sure there are no dangerous tools around or precious things which can be broken or lost.
Don't get me wrong, I love my boys, they are the best; kind, caring, funny... but parenting them for almost 11 years has been difficult beyond belief; dealing with violent tantrums, OCD issues, sleep problems, self care problems...... oh dear.... where do I end the list? I was given my boys as a gift from God, when I thought I would never become a mum, He gave them to me to care for. He knew I could deal with the challenge and He knew I would love them unconditionally and fight for their welfare. I have risen to the challenge. I do worry about this confounded breast cancer though, when I was diagnosed, my thoughts were with them and how they would cope without me. However, I would not change them for the world because they are who they are and they are mine and I am not going anywhere.... they will see me when I am old and grey!
So today, I am feeling bereft because my little boys have gone to school.
Oh Sara, life is so tough and so demanding so much of the time. I feel for you and your sons and the joy they bring you at such cost.
ReplyDeleteI hope the first day of school goes well for them. Our schools don't open until next Monday.
I understand how difficult it can be having a special needs child while having cancer. I do hope there are no meltdowns today.
ReplyDeleteYou will need much strength this week to deal with yourself and the boys. But Sara, I know you will. The adjustment to back to school routine is hard on everyone isn't it? And harder when you have children who struggle. My hope is that with this being the first week all you will need to adjust to is the new routine. I'm hoping that Joe's new teacher is going to be the best thing that has happened to him in school for some time...that he will find a mentor in this male teacher who will be "exactly" what Joe is looking for and needing right at this moment in his life.
ReplyDeleteAs for Harry, I smiled at his "worries" because it is so very much younger brother to watch what the older one is doing, going through and imagine what will be when it's his turn. That will pass, that worry about high school and his support teacher. Sure it will.
As for communication. Honey, I could not agree with you more. In all aspects and walks of life but especially when dealing with special needs...understanding, patience and communication. Taking time to listen and really hear. We all could take a page from that.
Sending you strength and love across the ocean. ♥
Thanks for all of your comments and words of support.
ReplyDeleteGood news is, I adopted some strategies to try and avoid melt downs and so far so good.
I did get called in to see Harry's new teacher but it was only because she thought he may have a problem with his eye sight so appointment has been booked :0)
Sending you some love from across the continents-Jesus will always come through turn to him...this is a comment from India
ReplyDelete