Why can’t things just go back to normal!
I am really getting sick of medical appointments. I seems lately we are lot living our lives but months or seasons or years but by medical visits. If its not the Hospital its the GP if its not the GP its the Education Psychologist. Not that I don’t really like the services were getting -I also think the NHS is one of greatest things in this country. No that any of the political figures in this country care for it that includes labour they think they do but all they really care about is there legacy.
Nevertheless, It’s has come to a real surprise to me that I am looking forward to the next appointment for Kai as I guess I am hoping its the last. Well I am sure its not. I have not liked any in the passed as we have seen our poor boy prodded and poked around. He has been examined and explored in so many ways, so many countries and so many health care workers that any other appointment just comes natural.
Kai again will see the occupational therapist and also the Eye doctor, he will then go to see the neurosurgeon again about his fits. So this month is rather busy.
We also need to go to see a school st Philips on Friday I think I have talked about the school in the passed. It comes to something when us parents have to decided the school for our children. I am sure my parents had the same thing for me when I was young
Do I send to a normal school and go through all of this outside and Kai being prodded around or does he go to a special school and he get all the help he needs and prodded around at school rather than outside.
The other question is do I send to a normal school and Kai may or may not get bullied?
well not sure this is the post for that but some food for thoughts.
Getting back to all these appointments I feel most of them came to nothing and, whilst I’m glad such services are in place, felt like ticked boxes on a list rather than anything helpful. well not sure I can help how I feel. If your in the same position how did you feel. I thought in a special needs department of a school in Putney so I massively support catching the signs of learning difficulties and getting the help one needs as fast as possible. I can also see that so many children have no difficulties but for some reasons are going through the same assessments and I guess this makes so much pressure on the system so its not as good as it should be. I guess this is one issue of social systems, if its free (so called paid for by tax) We must class everyone as having LSD rather than looking at the underlying behaviour issues.
Maybe I am just paranoid, and its not the real case, nevertheless, I did not see the same issues in many other countries I have lived and where we must pay for the services. Maybe they are just indenal or cannot afford to pay. What do you think?
The funny thing is getting back to Kai and the occupational therapy(OT) appointment. I know how it is to have poor motor skills I have very poor skills myself and cannot write for toffee. To be honest, I did not have much interest and was not even sure I understood what it was. As far as I was aware,
Kai is clumsy falls all the time, holds cutlery like it’s the first time he’s seen it even to this day with all the help he has had. He still walks and has a slightly awkward gait but in my mind it has never added up to a physical problem that needs intervention. If anything, the invisibility of autism stems from an absence of physical indicators. To look at Kai, unless he speaks you would not really be able to see he has a disability.
As I have probably said on many occasions Kai will play alone and will walk out to people and watch but will not play even in the playground he has started to make a few friends now but still won’t play he watches them awkwardly.
recently my wife and I went to a screening of an Autistic movie and a talk by some renowned OT therapists. We got a lot of handouts and asked a lot of questions. It is amazing what you see and what you are told and wonder why we have never been told these things before? Again is it because the NHS is to busy with so many people with LSD or thinking they have. We have a look at the leaflets and notes.
OT will teach you there are Seven Senses, Sight, Sound, Smell, Touch and Vestibular and Proprioception. Well all know the 5 senses and the two others are to do with balance and awareness of your body in the space it has around it.
Were you aware of these two? if not I was defiantly not too but it does make sense. As I know for myself I am not very good at space awareness.
Also if you don’t have these two you will defiantly have issues with learning and attention.
this is also unsurprisingly liked to the sensory processing disorders found in most people with Autism(ASD)
some of the things we noted were how we crave touch, like rubbing, feeling, bashing and and playing or fidgeting. Kids with ASD might not feel pain or hot temperatures as well as kids without. As I said will have poor motor skills and might rock, flap, they may not get as dizzy and love to spin.
They may not feel danger and have poor attention span they may go right up to the TV and press against it.
Well these are all the things we have learned from OT. All the other appointments I am also feeling like an Eye Dr and now also know all the terms from an MRI scan. I am beginning to feel I should of been a Dr well if I was not so stupid lol. I sure do have Dr handwriting.
nevertheless, all of the information I have gathered with Hiroko has really helped us to understand what Kai has been going through and also helped to to understand my own difficulties. I find it has also helped me to write about it and hopefully get some of the knowledge out there for people struggling to get the correct help.
The next thing to feel out which I was doing today was Kai’s DLA form. We have been unable to do it and have been rejected so many times as we have not been in the country long enough. Well hopefully now we are hear now for the right about of time so today we were gathering all the forms and taking the last OT session report adding it and hopefully we can send the DLA form again next week. If we get DLA in the end it will allow us to be able to do more for Kai. As we all know there will never be a cure of ASD but I am glad Kai is getting all the help his getting now and I know the beginning sounded like I hate all the hospital appointments but I do understand them and I’m glad its getting the support his getting and thank you to all the NHS staff that help him and to the UK for the tax system that allows this. we all complain in the UK but atleast we can get this help without being rich.