The way it should be….

I still think back to the 7th March when all my fears and worries were confirmed in the Paediatrician’s office and the Doctor telling me all about his team of specialists would be put into place and that would work with Isabella. As we left his office I recall my Dad telling me that it will be good, as now there would be special groups for Isabella geared towards her needs, groups with other children like her. Although I was anxious about what was ahead of us I felt better, as I would now no longer be alone and I looked forward to meeting these professionals and accessing these special groups for Isabella.

As I mentioned in previous posts some of the professionals we have met have left me feeling disappointed. See < So tell me what is it you do? > and as for groups you only have to read < Boot Camp for Babies> to understand that the way I felt just over a year ago has changed significantly. In March of last year I pinned all my hopes on these so-called professionals and had high expectations of what they could provide Isabella. Now sadly I don’t hold much hope with them and my expectations are anything but high.

If Isabella is due a new piece of equipment, I no longer get excited until I see it, as I know the wait will be a long one. If we are due for a Home Visit I expect whoever is visiting to be late and ill prepared. If we go to the hospital I expect to kept waiting for hours, without an apology or acknowledgement. If we are due test results I don’t expect to receive them promptly as promised, I expect that I will have to make a call to chase them up. If I have to make that or any other call I expect to be kept waiting . If I do finally speak to anyone  I expect them to be blunt, short and uncaring. I expect all of these things because that is what has happened time and time again and if by chance it wasn’t as I expected it is then a bonus. Sadly I haven’t had that many bonuses.

So perhaps with this in mind you can now imagine when Isabella’s Speech and Language Therapist (SALT) told me she was going to set up a special sensory group I wasn’t expecting anything much. To be honest I wasn’t expecting it to even get of the ground and that it would just remain a suggestion. She wanted to start the group as she couldn’t believe that there was nothing local for myself and Isabella to go to, that focussed on Isabella’s needs. I explained that there was a group started previously in the next town along, but that very few people attended and there was no focus, it was just like a coffee morning. I did raise this point with the person who ran the group but very little changed. I personally found that my time could be better spent with Isabella taking her swimming. Needless to say the plug on the group was pulled. On hearing this she was keen to get the wheels in motion and true to her word she set the group up as promised.

I missed the first two sessions, as we were on holiday and when we went last week Isabella and I were very surprised.  On entering the room we were surrounded by several smiley faces. In fact there were more adults there than children. It was just Isabella, her friend Tyler and another little boy. The rest of the group was made up of Isabella’s and Tyler’s Physio, Isabella’s Advisory Teacher, an Early Years Inclusion Teacher and 3 assistants. The room itself was a sensory heaven, with brightly coloured walls and windows, beautiful decorations on the ceiling and an abundance of special needs and sensory toys. Isabella’s speech therapist was playing the guitar and could actually sing! Isabella’s Physio made suggestions on what body parts we could work on whilst we were singing the songs. Isabella was smiling away, as I mentioned before she loves Music! She kept looking at me smiling, letting me know she was having a good time and she wasn’t the only one.

During the hour long session we got the opportunity to go in the black out sensory tent and use a light panel to explore jelly and coloured stones. I have played with jelly with Isabella before, but there is something to be said about exploring it in the dark with a light panel, it really heightens your sense of smell. Isabella got stuck in there and was having a good feel around with both her hands and feet. There were switch operated toys namely a bubble machine, disco balls and a vibrating cushion. Isabella impressed both myself and her speech therapist, as she pressed the switch for the bubbles with such accuracy and determination.  Added to this there was a big tray with Cheerios in it, which Isabella took great pleasure in turning upside doan and throwing it all out all over the carpet. We had cheerios coming out of all sorts of obsecure places when we got home! There were so many toys and things to look at, it really was like a sensory sweetie shop! We sang a goodbye song and Isabella and I were presented with a collage of photos of the activities that we had undertaken since it was our first time. It was a lovely idea and perfect, as I try to document and take pictures of everything we do with Isabella. It was a thoroughly enjoyable session and I really hope it continues, as I know the Speech Therapist mentioned that groups had run here previously and she was surprised to learn that they had stopped, hence her push to start one up again.

Since attending the group both Isabella’s Physio and Advisory Teacher have been in touch to book their next visits and to see if we enjoyed the group. I explained that we loved it. They both were impressed with the group also and I could sense they really wanted my seal of approval on the group, as I have raised issues with them previously about the lack of groups and support locally. While I am not taking anything away from the group, it still frustrates me that we have waited over a year to go to a group like this.  There clearly is a need for this group, they have a wonderfully suitable location and abundance of sensory and special needs toys, plenty of staff and yet nothing was done sooner. Having a group like this is the way it should be and this is exactly what I was hoping for back on the 7th March of last year…..

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