I remember Isabella’s Physio mentioning on our very first meeting, that when Isabella was older she would go to a Physio Group with other children. The group would be with children of a similar age and with similar physical disabilities as Isabella. At the time I put it to the back of my mind, as she was only just over a year old and she hadn’t even began her Physiotherapy sessions at home yet. Time soon past and at the start of July last year, she mentioned that the group would be starting in September. I recall her saying they were known for being a bit strict, but she thought we would get on okay, at the time I didn’t think anything of it.
September came and by this time I had been introduced to Zoe and her gorgeous little boy Tyler who had also been referred to the group. Neither of us had any news on the group and when it was going to start, so I called Isabella’s Physio who chased it for us. I wanted to know, as I wanted to plan the rest of Isabella’s week around it, and if was that important I didn’t want to miss any sessions.We finally got a letter through a few days later saying that we were to have a home visit from one of the Advisory Teachers from the group. The teacher was going to be coming to our houses separately to introduce herself, so we thought why could she not just see the two of us together. We telephoned the office and they agreed that would be possible.
She came the following week on a Friday afternoon. She told us a little bit about the group, nothing that we didn’t already know and then asked us if it was somewhere we would want to go. Zoe and I looked at each other confused, as we thought we were already going and that this was just a visit to meet us first. We explained this to her and she apologised. We asked when we could start and she said it wouldn’t be for a couple of weeks now as she would have to get the welcome letter out to us first. I persisted and asked why we couldn’t attend next Tuesday. She said she would look into and let us know. This visit and the disorganisation surrounding the start date should have set off red warning lights, as to how this group would go.
On the Monday afternoon she telephoned and apologised and said we couldn’t start tomorrow, as another two children were starting, so we would have to start in two weeks time. I was cross to say the least. I told her that I was very unhappy with the situation, as by the time we would finally get to start it would nearly be half term and we would have missed four weeks. Four weeks of supposedly important therapy for our children.
Annoyed I telephoned the pediatrician’s secretary, who got on the case for me. She called me back and said she understood my frustration, but said I had no real argument, as we had been given a place in two weeks time. So feeling deflated I let it go.
Two weeks soon passed and on the advice of the teacher we arrived ten minutes early at 9.50 am. The group ran from 10-12 pm. We felt quite intimidated, as we were the first parents and children in. There were 8 people in the room who looked at us strangely making us feel very awkward. We explained that we had been told to arrive promptly so the group could start on time. Only then to be told that most parents are usually late! We were told to come and join them on the mats, I began to feel very uncomfortable as everyone swarmed towards Isabella and Tyler, sticking theirs heads in their faces. Both Isabella and Tyler are not good with strangers, let alone a crowd of people.
Isabella began to get anxious, so I sat her between my legs and reached for some toys. No sooner had I done so I was sternly told that we practice sitting later, it would be an idea to put her is a different position. Shocked and beginning to feel I had made a mistake I laid her on her back. The same stern voice asked me what Isabella doesn’t like doing, and to out her in that position, as they would have to work hard in this group. Already before the group had even started I wanted to leave. Even writing this now the same sick feeling I got that day is returning to the pit of my stomach. I tried to make eye contact with Zoe but she had problems of her own. Tyler was no longer in her arms he was practising pushing up on his arms with two strange ladies and not sounding very happy about it. Isabella was starting to get grizzly so I picked her up, much to the annoyance of the stern voiced lady. I explained that I didnt’ want her upset before we had even started the session.
I wondered around the room and noticed the windows looked like they belonged in a prison, black metal framed and you could hardly see out of them they were so dirty. Another face popped up in front of Isabella. She looked and sounded slightly friendlier than the last voice we had heard so asked about giving Isabella a snack about 10.15, as that was her normal snack time. She said snack time was at 11am. I said that could be difficult, as she would get hungry and understandably grumpy. Before I knew it Mrs Stern stepped in and barked that she would get used to it and they didn’t allow children to eat unless they had a metabolic condition. At this point I felt like I was back at school and being bullied. I wanted to leave now. I wanted my husband Paul. This was not what I had signed up for. This was a group for children under 3 years of age with special needs, not a group for adults.
Flushed, hot and unusually quiet I took a seat, as the other Mums were filtering in. I sat motionless throughout the hello song. Looking around the room at the other Mums and their children. I was startled, by Mrs Stern telling us about the first exercise. She rushed through it and didn’t make clear what she wanted us to do. I am a visual learner I need to see how to do something to fully understand it. She came over and said very abruptly Isabella needs to lay her hands flat on the floor. I wanted to scream at her, she couldn’t do that so easily as her hands are fisted most of the time and she has involutary hand movements, including biting her fist. Had she not read her file, did she not understand that she was running a class with children with physical disabilities and that it takes time and patience. I wanted to cry, I wanted to go home, I wanted to go home now. For someone who is normally so vocal I became quiet and it felt like I had been paralysed. Why was I not telling her this is no way to speak to me or Isabella, why were my legs not heading towards the front door?
Now the next exercise was starting, she was clapping her hands shouting angrily, ‘Come on quickly now!’ It was now a tummy time exercise where they had trays full of shredded paper and animals hidden in them. It was now 10.30 am and Isabella was not happy, she was hungry and overwhelmed. Isabella snapped me out of it, if my daughter was hungry I would feed her and she couldn’t stop me. I picked Isabella up and headed to the buggy park to get her snacks out the change bag. Mrs Stern (who I now in my head was calling a witch) saw me leaving and asked where I was going. I told her Isabella was hungry, she told me we would break at 11am for a snack. I told her that Isabella couldn’t wait and wouldn’t be happy doing any activities without eating first and turned on my heel. Leaving her standing there shaking her head and looking cross.
I sat back down with Isabella who was more settled now that she was eating. Mrs Witch stared at me throughout and when I gave Isabella her second biscotti, she hissed at me that Isabella couldn’t have anymore otherwise she would miss the tummy exercise. I explained that she would have to mis the tummy exercise, as if I laid her on her tummy now she would be sick. Looking annoyed she left me and Isabella to it. The tummy exercise was over and the parents and children were heading over to the benches. She came back up to me hands on hips and said we would be having a snack in 15 minutes so I need to come over now. If she had looked closely she may have seen that in fact we had finished and were just having a quick drink.
We moved on to the bench and I noticed Isabella had her name beautifully laminated in stencilled letters. I remember thinking how pretty it was and how horrible the class was. The next exercise was a difficult one for Isabella, as she cannot bear weight on her feet. Isabella had to sit between my legs on a bench and put her feet down on a wooden box. The lady who was slowly moving up the rankings to from Witch to super bitch, came around and said that Isabella needed to work harder and shouldn’t be leaning back on me so much for support. Again she knew nothing, Isabella has an incredibly weak trunk and has a tendancy to flop backwards or forwards. She then continued in a sarcastic voice to tell me that, ‘Isabella doesn’t like having her feet flat, does she?’ I stopped her there and curtly replied, ‘She can’t!’ I was stunned was this lady for real? How was she working with children with Special Needs, in fact how was she working with children at all? It wasn’t even 11am yet, I wasn’t even half way through but I knew at that point I would not be coming back.
It was time for the next exercise; standing, something I know Isabella hates and she was already frustrated. I decided not to make Isabella participate, as she was ready to blow. I heard that already too familiar voice shout crossly, ‘You need to hurry up if you don’t move quickly we will have to miss exercises out!’ I couldn’t belive what I was hearing ‘move quickly’, a lot of these children couldn’t move let alone quick. Surely it was about the quality of exercises and not the quantity?
We then moved onto more familiar territory, exercises her on back. Isabella was much more chilled and doing fine until SHE came over, Isabella tensed up straight away and cried. I picked up and she calmed down. I glanced over at Zoe and it had all been too much for Tyler and he had cried himself to sleep. I could see that the Witch was annoyed that her new recruits weren’t doing as well as she had expected.
Finally it was time for snack and a rest, or so I had thought. There was no special seating, just wooden boxes, which the parents sat on with their child on their lap. There were hand-held mirrors on the table and chopped bananas and pear puree . I reached for some banana for Isabella only to be quickly snapped at, ‘Isabella needs to look in the mirror first!’ They just kept coming, how was not looking in the mirror before eating her banana a problem? Did it matter when she looked in the mirror. We often look in the mirrors at home and talk about her face and features. I did not need to be dictated, as to when we look in the mirror!
Isabella finished her snack quicker than the other children, as she had not eaten long ago. So we sat there quietly, with me wishing the time to hurry up, I wanted to go home. Isabella was looking around the room at the other children, I was looking around the room seeing if anyone else felt as uncomfortable as me. I could only find one person – Zoe. She had been matter -of -factly told that Tyler should no longer be drinking out of a bottle, by you know who! She then clocked Isabella and I sitting quietly, apparently doing nothing. She grunted, ‘If you have finished eating, you need to read a book, we don’t just sit doing nothing!’ I am not violent by any stretch but this lady was fast heading for punch on the nose!
Before I knew it I had a tray with a book and matching animals placed on the table in front on me, by the Advisory teacher who had visited me at home. I started to read the book to Isabella, but apparently I wasn’t reading well enough, as I had a parrot (the Advisory Teacher) next to me making the animal noises and asking Isabella questions about the animals! Isabella didn’t know where to look or listen. I decided now would be a good time to change Isabella’s nappy, have a minute alone to compose myself and kill some time.
I found the changing room and no sooner had I pulled Isabella’s trousers off than the Teacher waltzed in. She asked me if I was okay. I told her I was fine. I had met the woman once before I wasn’t about to confide in her how much I hated the group and that ridiculous lady! She soon left realising I wasn’t going to tell her anything.
Finally after a long drawn out nappy change, we rejoined the rest of the group on the mats for some singing. Something both Isabella and I usually enjoy, but neither of us were feeling it. After singing it was time for parents to grab a coffee and leave the kids for 10 minutes. Zoe and I were the only Mums that stayed with our children. We were given funny looks, Isabella is not good with strangers and she hadn’t settled, so there was no way I was leaving her. Tyler had now woken up, but didn’t want to laeve Zoe’s side. Both Zoe and I had two people either side of us interfering when we were playing with our children. I was showing Isabella a boat with stick men in and both ladies to the left and right of me were jingling instruments, trying to get her to hold them. Isabella was very confused, starting to grizzly again and kept looking up at me for reassurance. I told her that it wouldn’t be long and we would be home.
The goodbye song couldn’t have come quick enough. After it finished Zoe and I got our bits together, we originally were going to feed Isabella and Tyler here, but both decided we wanted to leave as soon as possible. No sooner were we out the doors we had we started to say how much we hated the group and didn’t want to go back.
The journey home was a non stop rant. Both children whacked out, were asleep the whole way home. We had both decided we didn’t want to go back. I couldn’t wait til Paul got home, I needed a cuddle. I waited until Isabella was in bed and told him how horrible it was and for the first time in a long time I cried and cried. This made Paul very angry, that the day I had built up in my head had gone so horribly wrong.
The next day I complained and the Advisory Teacher came out the following week for a meeting to discuss my issues. She bought along another colleague with her. Before I could say anything Paul stepped in. He deliberately had come home from work to give them a piece of his mind and explain how angry he was that I had been so upset by it all. I felt so proud I had stood up for Isabella and Paul was atnding up for the both of us. When he was happy that he had made his point he left me to it.
I told them everything, how I felt, how I was made to feel uncomfortable, how rude the particular lady was and how I wasn’t going back. The advisory Teacher got upset and apologised and said the lady in question had been spoken to. I told them that I teach children and had never spoken to children the way we were spoken to. Her colleague chipped in saying it was conductive teaching. I had read up on this and their class certainly didn’t reflect the values of conductive teaching. She also said she was shocked and that no one had ever complained before. I found this hard to believe. I asked her if people had been to the first class and not returned, she said they had. I laughed wasn’t that their way of complaining! They asked me if I would reconsider I said no, it wasn’t for me or Isabella. Once bitten, twice shy and all that.
We now have home visits from the Advisory Teacher instead and Physio sessions with Isabella’s Physiotherapist still continue as before. On her first visit we started again and she again apologised for the miscommunication in the organisation of the group and for her making me feel uncomfortable. She was honest with me and said that she was new to the area and the group. I told her that I didn’t mean to come across rude but I am Isabella’s advocate and I will fight (metaphorically speaking) anyone that is not doing right by Isabella. I accepted her apologies and we started afresh.
When she visits she tries her best to ensure she is doing everything right, she brings different toys for Isabella and on each visit and is constantly asking if there is anything else she can do. I guess she is weary, as she knows I am not one for keeping quiet where Isabella is concerned, but that can be said of any parent. I do feel however that as a parent of a child with special needs, who has no voice of their own, you do fight harder and seem to have more battles more than most.