Well the 30th of July has come and gone! I rang the council to be told that there are no inclusion panel meetings during the summer holidays!! Aggrrrrhhhh!!
They said that they must have just said all paperwork was to be in by that date! (they didn't!) However, they are still waiting for 1 report and that is for a paediatrician from the hospital! They haven't met Amira yet the appt is booked for the 7th Aug! Apparently they "make exceptions for medical appts to be late!" Of course they do!" The council will have a full meeting in September and hopefully have Amira in a school in the first half term of autumn but she is sure that it should be before Christmas!!!!
I was flabbergasted! It is bad enough that they are making their judgement based on reports from people who have spent just minutes not even hours with Amira! The Educational Psychologist came to the house and met her for all of 3mins, she ran out of the room and he continued the rest of the conversation with me! He was a complete waste of space, he had tried contacting the school before he rang me wanting to go and see her there!!! That should of told me something! Instead, when he got here he asked me "why I kept excusing Amira's behavior with Autism & ADHD! How did I know?" I was a bit taken a back! I explained that she was diagnosed in April and I was still unsure what parts were her autism/ADHD and what was just testing boundaries? He asked if I was sure she was diagnosed as he had no record of it! For a split second I thought maybe I hadn't had it and it, was it all a bad dream? No, of course I knew the truth, no matter how I wished, prayed and pinched myself to wake up, I had the diagnosis. I will never forget that day. I still remember exactly how it feels and can cry on cue just thinking of it!
This guy was a joke! I fought my corner and confirmed the date and time I was told Amira was diagnosed. He just said he didn't have that information! I told him that I thought that it was a pretty vital bit of information to have before you come out and see her. He then told me that he couldn't give a full report as he has only met her for a few mins it will be a a very basic one!! I asked about the Ed Psyc that Amira seen from the other Council! He said that the previous report was not adequate!??!! I asked how when she had met Amira several times in school surrounded by her peers and alone! He said the report wasn't in-depth enough! I responded surely it would be more in depth than his would be though!
As soon as he left I started the calls again! Speaking to Parent Partnership (Judith) I confirmed that CAHMS had sent the full report to the head SEN at the council on the 26th of June weeks before his appt with me. She rang and spoke to the council and they apologised to her they did have the report he just hadn't read it!!! Inexcusable!
Looks like I am back to that brick wall again!!
Next to come is the appointment on 7th August with another new doctor who doesn't know Amira and never even met her before! How are they able to make a report on her that is to dictate where Amira will be schooled until she is 19!!!! This system is pathetic! The council have proved to me that they do not care about my child but are of course happy to take my money for their council tax! My parents, both sets of grandparents and theirs before them have lived in Newcastle all their lives and paid into their pot! None ever claiming a benefit and here I stand asking for my child to be educated and she is being denied her legal right to education and care! Why? Because she is Autistic/ADHD!
I am now truly feeling the effects of sleep deprivation, I am a walking zombie and emotional wreck! I have stepped down from work and been put on the sick from the GP. I have been warned that the heart palpitations and chest pains that lead me to be rushed to hospital a few weeks ago by ambulance was a warning and next time I could be looking at a heart attack if I don't start to take it easy! Burning the candle at both ends and something has to give! Although I love my job I love my kids more and I am having to prioritize at the moment and I chose my kids! Within 3 days of being off my work has arranged for me to see a councillor!! At first I was annoyed however I know they are doing it for my own best interest. In all companies we are all just another number however with my job I have some great people I work with who genuinely do care. I spoke to one of the managers who after I explained the whole deal he said he never realized how bad things were. I suppose I don't really tell a lot of people how I really feel and let everything get on top of me until I finally blow! Explains my skin I suppose. I am still debating what to do, considering giving up work all together. Do I then lose all contact with the adult world and would I then start living even more like a hermit! Or do I continue on and hope that one day it will get easier? When both kids finally do start school full time as surely at some point they must! What would I do with my time?? Other than sleep, I could really do with that.
I see day by day how Amira seems to be deteriorating and withdrawing more from conventional life! It is killing me! I seem to cry on a daily basis, the type of tears where I end up in a puddle on the floor sobbing why my baby girl, just give her back to me, please God, why her, I swear on my life I will do whatever he wants, he can take my life if he will spare her from a life like this!
Some days I have hope that when Amira is in a special needs school she will get the help she needs and will be able to function in everyday life. I hear stories of other autistic children who are very sucessful in their adult life, Others I fear the worse and worry that everyday will be like today and when I die she will be in some god awful home and be alone. I cannot think of anything worse.
Today Amira flooded the house by turning the taps on in the bathroom and stood laughing as she watched them overflowing! A few days ago she stabbed Tariq just under his eye with a knife and made a small mark. I loose count of the times I get bit, scratched or punched and the new one spitting!! I am at a loss to know what behavior is autism/ADHD and what is just naughtiness I now just tell her off constantly as no one has told me the best way to deal!
I still don't fully understand all about autism/ADHD and am learning as I go via books and Internet. There is no one to tell you what to expect and how to deal, no one to teach you what behavior is usual! There is no help, you get your diagnosis and they leave you to it! How are parents supposed to know, as if parenting alone isn't hard enough. Throw a few special needs in the mix and boom what you thought was the right way to discipline your child, just doesn't work!
Ok focusing on the positive, Amira is happy, she only occasionally asks to go to school and to have friends, like other children she wants everything she sees on the tv, she painted a beautiful egg at the ceramic experience the other week, when we went to the inclusion day at the Gateshead Stadium she loves the trampoline and seeing all the other children she even spun plates and played on the drums. She may not have played with others but she did play along side them with no trouble. Today we went to The Bear Factory and Amira absolutely loves it, she chose a pink bear that she helped stuff, put the heart in and made a wish on it, she then combed the bears fur and picked out clothes for it too, she kept going back and forward to the little mirrors and smiling and talking to the bear (pinky) asking if it liked it's outfit and cuddling so tightly! She never ran away once and was a good girl in the store. I of course loved every second of her smiling even if it did prove difficult, mam in the wheelchair and Tariq on one hand and Amira on the other! It was easier to have my mum there in case I had to run after Amira she could stand with Tariq. Harder to run and catch her when you are carrying Tariq too!
I have been told several times I should get in touch with social services and look into respite care. Let me just state this here and now. I do NOT want it! I know these people are very good and I know they do a fantastic job. However, my daughter will not be leaving my sight to be looked after by a stranger while there is a breath left in me! I will simply not allow it! I know some people think I am daft but there is no way. In some ways I look at that as the ultimate failure for me as a mum? I cannot even take care of my own child. I on the other hand would be fully supportive if another mum or family were considering it, just isn't for us!
I have started looking for classes for Amira to go to, dance, singing, trampolining etc! Not quite sure where to look. Not like I can just put her in the "normal" class! What if they have the same reaction as the mothers at the school did?? Any ideas or recommendations appreciated.
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