Learning the lingo

Of course we needed a lot more than an assistance dog, and for that we needed funding and help getting us through the maze of organisations who were more than happy to help you spend your budget. We applied for funding for home help through Child & Family Services and for Special Educational Needs funding at school. We went on some more waiting lists for basic courses about children and autism, applied for the boys to go on a course for siblings of children with autism...the list was endless.
You have to deal with so much and you certainly learn a whole new vocabulary! Since we had used the summer holidays to 'study' Amy we were able to be very clear and to the point in the help we needed. After some more waiting lists we were invited to discuss Amy's needs with Child & Family Services. if all was well, funding would follow suit. That was so much harder than we anticipated. You have to bare all to a complete stranger, be open about your struggle and you have to admit you cannot do this on your own. You feel you have failed as a mother. Those interview rooms come with boxes of tissues for a reason!

Getting funding in school was a difficult and tedious process. Again you had to reveal so much to a bureacratic organisation. And since this type of funding was not not easily granted, we were not sure we'd had any form of success. And school was THE place Amy was struggling. She had a male teacher at the time who did not believe in autism nor in involved parents who thought they knew their child better than he did. We were mollycoddling her, he said. Telling her of in no uncertain terms was needed here, not all that pussyfooting around!
Amy had been given a safe spot in the school, outside the class room, which he thought was absolutely ridiculous and he would not let Amy go there when she needed it. Her place was in the class room, not in another room.
Break time was outside time, and the idea that free outside play was even more sensory overload for Amy was beyond ridiculous!And that she usually came back to the class room in floods of tears was business as usual. Amy was always crying anyway! The special needs coordinator in school told us not to talk about things with this teacher too often. Parents with their own ideas were a menace to him.

So in spite of Katie already working her magic and Amy being a lot happier at home, the journey to school caused tummy aches each day and Katie was very much needed at the end of the school day. Here, in the Netherlands we have an organisations who can point you in the right direction when you are trying to look for help. They pointed us in the direction of Autism Support, an organisation which helped children and schools deal with autism within the educational system. I fired of an email with a plea for help and prayed for a swift answer.
That same day I saw the head teacher. When she asked me how things were, I broke down. I told her in no uncertain terms that I was this close of taking Amy out of school. That her teacher did nothing but ignore the special needs plan that was in place for my daughter. I told her about the email I had just sent and that I had asked for help.
She was very understanding and told me she would look into getting intermediate funding so they could get in some expert help for Amy

Soon afterwards a lady called Rose rang me. She worked with Autism Support and had read my mail. I explained what was going on and she agreed to come and do an observation and an evaluation with the teacher, the head teacher, the special needs coordinator and us.
They would also do a team meeting, educating the team in school about basic autism.
The head teacher agreed and dates were set.

This would be the first time that we would meet Rose in person. She had been very friendly on the phone and very helpful, but this petite lady really knew her stuff and she meant business! She had an iron will and such a passion for autism! She could not care less about the teacher's opinions and feelings, she had loads of tips for things to change in the class room and was able to get Amy's support back on its feet in no time at all.
She impressed the head teacher very much and school decided to use the intermediate funding to hire Rose.
In the meanwhile we had been given the good news that our application for home help was approved and we too hired Rose. This meant that Amy had the same support both at home and at school and Rose would get to know her very well.
This was the beginning of a very educational but emotional really hard time. Trying to figure out your child all over again. Trying to use certain methods, only to fail because it did not seem to be the best method for Amy.
But luckily there was the invaluable help of Rose. We never had to explain school to her or her to school. It was the foundation of Amy's growth.

One of the younger teaches in school, a lovely young girl named Sacha, was trained by Rose and her collegue Caroline, to work with Amy. Twice a week she would get Amy from the class room and deal with both educational things as well as social skills.
Because of Amy's hyper mobility she was given an excercise ball with feet to sit on, so she could wobble to her hearts content without falling of a chair. Her safe place was redone, and her teacher was told that Amy was allowed to go here whenever she felt the need.
Her PE kit was labelled with a card explaining the order to undress and change into PE clothes and vice versa.
Amy was not to be physically touched nor spoken to in an unexpected loud voice, to avoid sensory overload. Because Amy could take things very literally, the eacher was told to be very clear in his instructions and always use Amy's name before starting a group instruction.
Eventually the teacher more or less gave up the fight and complied with what Rose sugggested. He grumbled that he had no wish to understand Amy but would do as he was told.
I summed up our relationship with him during a parent teacher consultation. After some useless to-ing and fro-ing I told we would just have to agree to disagree about Amy. For a minute he was stunned then shrugged. So be it!

Luckily Amy and Miss Sacha really clicked as did Amy and the SEN teacher, Miss Conny. She also had the full support of the head teacher. Slowly but surely Amy started to open up to the people who were there for her support. It most certainly was no magic wand that took all the difficulties away, but Amy was heard, she could tell her story and adjustments were made so she could succeed within mainstream school.

Of course we checked out special needs schools. We were torn. What was the right place for Amy?
But the positive attitude of Amy's primary school, their will to make adjustments for her benefit and to be flexible in their attitude towards her, made us decide she would stay there for as long as it worked for all parrties involved. Regular evaluations were needed to keep checking things were stilll going well.
A couple of months later the funding for SEN was approved and the job was again given to Rose. This funding also meant, that should things no longer work in the mainstream environment, Amy would have no difficulty getting a place in the special needs system. Things were getting back on track and the future looked hopeful.