May 5, 2011 at 8:03 pm #73673Mainstream school?
I’m pretty new to this so I apologise in advance for any mistakes!.
Im hoping for some of your wisdom – My son is 3 years old and has MD, he is bright, cheeky, spirited, very mischevous and incredibly sociable – he uses a specialist wheelchair, has difficulty with swallowing so does have a number of eating issues and poor head control. He is able to use a specialist toilet but needs to be placed on it as he is unable to transfer as he has very limited strength in his arms.
my husband and I always assumed he would go to the same primary school as his sisters, but it is already being suggested by the professionals that perhaps a special school is the best place for him! We are slighly astounded as he has no intellectual disability and thrives off learning and being with his friends who dont have a disability. I understand special schools have fantastic equipment and trained staff etc. but most of the children in my experience have a learning disability.
Are we mad wanting our son to have the same educational chances as his sisters? I would appreciate any advice –I know we may have some time yet, but as it looks like there may be a battle ahead I feel we need to be aware of our rights.
Thankyou in advance for any help.woodstockParticipantPosts: 10Joined: 05/05/2011May 6, 2011 at 8:48 am #80264Re: Mainstream school?
Firstly, no you are certainly not mad. Every child is different and if you feel that a mainstream school is the best option for your son then you should keep on pushing for it. My parents were told that the best school for me was a special school but my parents disagreed and after visiting the local primary schools found a really encouraging one and a headmaster with a very positive attitude. I absolutely loved my time there and also my secondary school years.
We have discussed the mainstream and special school issue on this forum before. Some had really good experiences of going to a special school. I think mainstream was the best option for me and with a supportive school there are few obstacles that cannot be got round. I had a helper at school, lessons were moved downstairs when necessary and adaptions were made to the building so that I could access. I was one of the first children to come under the 1981 Education Act and my parents used this to fight for me to have a mainstream education.
You do have rights and if your local authority disagree with you, you can appeal and take things further.
Good luck with everything and let us know how things go.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsMay 6, 2011 at 10:37 am #80265Re: Mainstream school?
If you haven’t done already, speak to the school his siblings attend or if you don’t want to go that far yet, if he makes regular appearances at school drop and pick up times, get to know the teacher that he would have at the school and try to build a positive relationship. If you need the school to back you regarding his need to go to the same school as his siblings the more you have done to build that positive relatiopnship the better. Although our son does not have the severity of problems that your son does, we have found that children at his school have learnt an awful lot from him such as respecting others and supporting him when he needs help, your son will be an asset and a valued member of the school because of this, gone are the days of keeping able bodied and not so abled apart. Fight his corner, he has the right to enjoy being with his friends and siblings and you have the right to have peace of mind that he’s happytomsmum1ParticipantPosts: 13Joined: 29/04/2011May 11, 2011 at 7:52 pm #80266Re: Mainstream school?
My daughter Emily is 4 and has a type of congenital myopathy, she attends a mainstream nursery (which is part of the local school) and in september will move up to the same school as her brother, although she has many difficulties, feeding tube, limited mobility & speech difficulties she has been welcomed into school and loves every minute of it.
She had previously attended a specialised nursery for children with additional needs as it was suggested by the professionals that she went there. It was a great year and a fab nursery but since Emily has been attending a mainstream nursery she has come on leaps and bounds, I can’t describe how much she loves her school and all her friends who are great with her. Emily has no learning difficulties and mainstream was deffinately the write choice for us.
Carolinecaroline5ParticipantPosts: 1Joined: 26/04/2011May 14, 2011 at 7:21 pm #80267Re: Mainstream school?
Thankyou for all your very kind and helpfull responses, its good to know that we are not mad and that our hope is very achievable. We will continue to fight for what we believe is the best path for our son.
Best wishes to you all
WoodstockwoodstockParticipantPosts: 10Joined: 05/05/2011May 16, 2011 at 7:27 pm #80268Re: Mainstream school?
I’m 20 and have congenital muscular dystrophy and use a powered wheelchair fulltime. I went to special school full time until the age of 6-7, until the headteacher recognised that I would excel more in a mainstream school. She helped my parents find a suitable primary school for me, and she found one about 10 minutes taxi ride from my home. It was not the closest one, but the headteacher there was hugely supportive and accommodating which was why we chose it. It was not accessible at the time, but ramps and a disabled toilet/changing area were put in before my arrival. I began slowly in the mainstream school, going in one day a week for a few weeks, with the remainder of the days in the special school. I then built up to four days, just going to the special school for physio and then finally full time mainstream school. I had a full time 1-1 support assistant for my time in primary and secondary school, until sixth form, where I did not (they thought it would help me be more independent, I argued that how could I be more independent with a disability which meant I relied on other people for help, but they did not listen…anyway that’s a whole other story!).
I hope this helps a little, I definitely thrived in a mainstream environment! Please let me know if I can help any more.catherineParticipantPosts: 24Joined: 08/02/2011June 8, 2011 at 7:55 pm #80269Re: Mainstream school?
Hi Woodstock, I am also new to this. My son is 3 in October and like your son is a typical toddler with normal intelligence. His problem is a congenital myopathy, and he has started using a power wheelchair. We have a specialist school with excellent facilities and a hydrotherapy pool which we go to weekly as an outpatient. We have been told that this school is not suitable for him as he needs to be with mainstream children, which i agree with. He has recently started at the preschool which is linked to the school that my Daughter attends. He loves it. We have just arranged for his power chair to be transported to the preschool once weekly as we usually keep it at our local respite centre. So far I have to say it is doing him the world of good and I am glad that we have decided to follow this route. It does help when you have good community team support and we had a meeting with all of his therapists and the pre school staff before he started so that a suitable care plan could be drawn up for him. I would say push for it, and good luck.jasmine1ParticipantPosts: 16Joined: 27/05/2011June 9, 2011 at 4:43 pm #80270Re: Mainstream school?
Jasmine, it sounds like you have a really good support team in place, like you say it really helps and makes such a difference. Glad things are working for your son.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas AdamsJuly 27, 2011 at 3:21 pm #80271Re: Mainstream school?
My brother had Duchenne Muscular Dystrophy, he was very intelligent and he always attended main stream schools. Sadly he died at the age of 20, 11yrs ago. Back in December my son, who was 8wks at the time was also diagnosed with this. I am definitely sending him to a main stream school. Special schools are in my option better for mental/behavioural difficulties. Why should someone who is “normal” in every way apart from mobility be ‘held back” Sorry if anyone disagrees, this is just my own opinion.harrysmumParticipantPosts: 2Joined: 27/07/2011August 17, 2011 at 11:47 pm #80272Re: Mainstream school?
My brother had Duchenne Muscular Dystrophy, he was very intelligent and he always attended main stream schools. Sadly he died at the age of 20, 11yrs ago. Back in December my son, who was 8wks at the time was also diagnosed with this. I am definitely sending him to a main stream school. Special schools are in my option better for mental/behavioural difficulties. Why should someone who is “normal” in every way apart from mobility be ‘held back” Sorry if anyone disagrees, this is just my own opinion.
Harrys mum, It’s all good, I totally agree, my daughter has Ullrich Congenital Muscular Dystrophy and is of completely normal intelligence. I will be fighting all the way for her to go to the same mainstream school as her sisters did. Why should she not have the opportunities for a wonderful education as they have.
To be fair I think the school will be completely accommodating to her needs and sort out ramps and things, it still concerns me that people might think she’s too much to handle, it also concerns me that she won’t be able to do up the buttons on her coat, or get changed for P.E. in time but we shall tackle these things one at a time as they arise.
Abbi is awesome, so intelligent and knows what she wants and how to get it. I’m sure it will all work out!!mrssb1002ParticipantPosts: 3Joined: 17/08/2011August 18, 2011 at 11:18 am #80273Re: Mainstream school?
I think you need to make some noise on this issue, both my daughters had severely disabled kids in their school. I would have thought that special needs schools were for those with mental health needs.
Nowadays we expect disabled people to work and live independently. How could this be achievable, if we stick them in “special” schools, away from their peers? I wish you the very best of luck.ranaldParticipantPosts: 747Joined: 05/09/2010August 18, 2011 at 4:07 pm #80274Re: Mainstream school?
not all special schools are bad and I know folks who were happy in theirs but sadly they are often too far away from your home which doesnt help socially. I opted not to go to one not because of the social issue of being with kids with limited mental function but because it was 2hrs away.
I dont have kids but from what I have heard about my old primary in particlar (they currently have 4 kids with CF) the more disabled children that attend the more funding and services they can apply for. my old school in particular has 2 dedicated teaching assistants who specialise in the changing of clothing and one to one supervision during PE, class outings and lunchtimes (nasal feeding). one has also done the course to do daytime resp physio on kids with CF.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010February 26, 2012 at 7:55 pm #80275Re: Mainstream school?
Hi ive only just joined this forum..but my son TJ has duchanne and a full time user of an electric wheelchair since the age of 10 years. He is very intelligent and has been to mainstream schools and mainstream college and is now on his last year of mainstream uni. He is known to all the staff and everyone is aware of his situation. He seems to be happy but does get tierd. I was advise to send him to a special college where he would live in and be sent to another college during the daytime as they couldnt cater for his intellectual needs. I discouraged it and now he comes home everyday and is very much part of family life. Well we wouldnt have it any other way. Good luck and its your choices at the end of the day. You are entitled.sandylou12345678910ParticipantPosts: 12Joined: 23/02/2012March 7, 2012 at 4:31 pm #80276Re: Mainstream school?
I have a 9 year old son with Duchenne. He is in Year 4 at mainstream school, where his sister went. I wouldn’t have considered any other school. He has no learning difficulties, although he is behind his peers. He has some lovely friends and as far as he is concerned he is ‘normal’. Yes he does fall over a lot more now and we will have to consider an electric wheelchair for him in the not so distant future, but to put him in a special school with kids with mental/behaviour problems would not be an option. We are going through the process of getting him a statement at the moment as we feel he needs full-time support, so hopefully by Year 5 he will have 1:1 support. You really have to be strong and fight for your son. With such a short life expectancy you want to give them the best, in school and at home. We do everything we can for him, so we expect the same at school. He does go to the local special school for swimming once a week as they have a warm hydro pool which is good for his muscles, but that is with a group of children from his own school who also have physical needs. Hope this helps. Good luck.TrudiCarpenterParticipantPosts: 3Joined: 07/03/2012December 12, 2012 at 7:58 pm #80282Re: Mainstream school?
Some advice which I hope you will find useful.
I work in Worcestershire and my role is specifically to help and support students with additional physical needs in mainstream schools – we offer advice to teachers, train staff with hoists and other specialist equipment, we support students with alternative methods of recording if required and generally support the student to access a full curriculum entitlement in a mainstream school. We are also link to the council in terms of adaptations to the school if req. I would never suggest which school a student should attend but would definitely help parents make a decision by showing them round and providing them with impartial advice on all the schools in their area. Special schools tend to provide specialist education for those with learning difficulties and therefore might not be the place if a child does not have such difficulties. There used to be special schools for students with physical disabilities but I am not sure if many of these still exist, certainly not in my area.
Unfortunately I do not know if a similar role exists in your area but a good starting point would be NNATPIP website (google nnatpip) they will be able to tell you more. If it helps we are called physical disability outreach teachers but they might have another name in another area. It may be that there is no such team.
Feel free to send me an email if you are still deciding. MikeMikeeglesfieldParticipantPosts: 2Joined: 12/12/2012
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