One mum’s tough decision – Mainstream or Special School for her daughter with Down’s

As a mum of a daughter with Down's Syndrome, I understand at first hand how hard it is to make the decision over whether to choose mainstream or a special school for your child. Today, I'm bringing you a guest post from mum, Michelle Bailey, who talks honestly and openly about the heart-rending decision to move her daughter, who has Down's syndrome, to a special school. She understands the issue both as a mother and from her perspective as a  school Special Needs Coordinator (SENCO)

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The choices we make

Around a year ago, I started to admit to myself that something was amiss. Georgia (then 9), had gone from being a happy go lucky little girl, an eager student who couldn't wait to enter the classroom each day and declare “I'm back!” to being somewhat withdrawn. Sometimes she cried before school; this was new and heartbreaking and as a Mum, I struggled to deal with the anxiety I felt all through the school day, waiting for her return so I could squeeze her and know she was OK.

I knew she was unhappy, but while Georgia has good speech, it was difficult for her to tell me what the problem was.

young girl
Georgia

With my 'detective' hat on, off I went to meet with Georgia's school team, as well as the educational psychologist and learning support worker from the local authority. I had contacted them prior to the meeting informing them of the issues we were having, so they may carry out their own observations of Georgia in the classroom setting before we got together.

Any angst I felt as a parent melted away as I entered the meeting. As I do in these situations, I replaced my 'Mummy' hat with my 'SENCO' hat. That's just the way I deal with things. The tears often come later.

I spoke to the professionals arranged in front of me and of my concern for Georgia's well being. I enquired as to what their views of the situation were and what their advice would be. Georgia was in year 5, and while her classmates were being coached on SATs papers, she was working with her teaching assistant on letter formation. She obviously found this frustrating. She was separated from her friends, metaphorically and physically. She wasn’t part of what was happening in the classroom and I knew she would feel this keenly. We discussed differentiated curriculums, small group work and limiting the time spent out of the her class group. Each suggestion seemed to have been implemented, and her progress had still slowed to an almost stop. Over and above this, for me, her behaviour was declining as quickly as her well being.

While everyone in the meeting was open and willing to discuss Georgia's progress, one thing was made clear – any decision to move Georgia from her mainstream school was mine to make.

And what a burden that was to bear. But carry it I must.

Sleep was fitful at best. Every single scenario swam around my head until the wee small hours; Georgia hating a new school and withdrawing further, stopping speaking, even. Georgia loving the new school and thriving. Georgia not being able to make new friends and spending the rest of her school life lonely. There was no stone unturned in my nocturnal world of 'what if's'.

Waking hours were tired and anxious. It was too much for me to carry, I was literally terrified of making the wrong decision for my little girl.

There was something else as well, niggling me, but I couldn't, at this point, put my finger on what it was.

I arranged to go and visit a local special school for children with moderate learning difficulties. As this is the only such school in our locality, I was worried that it wouldn't be suitable and I would be left scratching my head as to a next option.

My initial sense of dread was quickly replaced by the infectious sense of positivity within the school. A new build, the classrooms were spacious and bright, the class numbers were very small, the staff were bubbly and enthusiastic. The children were engaged, well mannered and seemed happy. The first classroom I visited saw a group of seven children of Georgia's age learning about insects, the thing that struck me was that they had little plastic versions of the bugs they were discussing in front of them, to touch and hold and see. I felt for sure this was how Georgia needed to learn and that she would blossom in the environment.

Once I had toured the lower school (primary age) with the Head, we went on to see the Upper School – the comprehensive age provision. If Georgia attended this school she would be there until she was 16. This was another point to consider. I had already been thinking long and hard about whether Georgia could and should attend main stream Comprehensive. My feeling was that she would not blossom with that environment. Having also got a teenage daughter who attends the local Comprehensive School, I aware of the fast pace of the school day and the maturity level of the students. I felt the provision at this SEN school was far more suitable and it gave me peace of mind to know that if Georgia did excel in a subject or subjects, she would still be put forward for GCSE's in them.

Leaving the school I felt a little lighter. It was a nice place, a place I felt my Daughter could be happy. Yet, there was the niggling again. Something nagging at me. A little knot twisting. After some soul searching, I realised it was my ego talking. So long had I spent saying “Yes, she's in the same main stream school as her Sister” and talking about the importance of our children being part of the local community, that I felt I was back peddling. Somewhere deep inside it felt like we were admitting defeat, I may as well have been carrying a banner saying “She couldn't cope!” as far as I was concerned.

But, that was MY ego talking. Of course our children should be part of the local community! And Georgia most definitely is. Of course she had done wonderfully well at her mainstream school since the Foundation Stage where she found her confidence and built a friendship circle that would last until she left the school and beyond. But Georgia needed to learn in a different way, and still feel part of her class. Due to the pressure to perform placed on teaching staff and schools the classroom environment changes from year 5 onwards, and it no longer supported Georgia's style of learning or right and need to be included.

From the moment I realised what the knot of anxiety was, I began to refer to the new school as a 'school for children with learning differences' rather than difficulties. This slight shift changed my perspective and gave me the positive mindset I knew I needed in order to be able to support Georgia with the transition. It wasn't that she couldn't cope, it was that she needed to be somewhere that could support the way she learned and still ensure she was a part of the school community

The next step was to take Georgia to the school and see how she felt about it. Discussing matters which are obscure to Georgia is difficult, however I knew once she had visited the school I would be able to work out how she felt about it. After some initial shyness, she had a whale of a time walking into the various classrooms and introducing herself! The children were all so welcoming, each room asking whether they “could have Georgia” in their class! We left the school and I drove home in silence, giving Georgia the time I know she needs to process and mull over an experience. Once at home we cuddled up on the sofa together and I ask her whether she would like to go that school. After some initial concerns about leaving her friends, Georgia said she liked the school and it looked fun. High praise indeed from Miss Georgia!

My best friend came with me to the follow up meeting at the current school. I needed a hand to hold. The meeting where I would officially tell the professionals involved with Georgia's care and education that it was my intention to take her out of mainstream provision. I was nervous and tearful and shaky. Not for the first time I questioned my ability to cope with these matters. Once in the meeting my professional persona took over and I dealt with the matters to hand. Two of the teachers, and my friend cried. I did not. I gained answers to the list of questions I had in front of me, thanked everyone for their time and left.

Then walked to my car and cried. I cried for my little girl taking such a big step, I cried for my own ego, I didn't want everyone to see the move as a negative, I cried because the stress and pressure of decision had worn me out. I was emotionally spent. But there were also tears of relief, because I knew in my heart of hearts I had made the right decision for my little girl, and I knew we had come through the hardest part.

The process of moving a child to new setting requires a stand alone post, I feel, but the one thing I will say here is that the process for us was made all the easier by befriending as many people involved in the procedure as possible. Phone calls just to thank someone for their time, or doing something so quickly paid dividends.

Six months later and Georgia is settled in her new school. She has already taken part in an athletics championship – in the long jump event, no less! (she may be small, but she's springy). She has new friends and is back to being a happy-go-lucky little girl. She skips off to her school bus in a morning (I'll need an entire other post about the school bus!) and waves goodbye with a huge smile on her face and my ridiculous little ego dances, because I know I made the right choice at the right time. More importantly, my heart dances, because seeing my children happy really is the be all and end all. Being inclusive and ensuring our children are part of the community is so important, but that doesn't mean every one of our children will stay in mainstream education. It isn't a one size fits all system, and to leave Georgia in her primary school would not have been inclusive practice. To be inclusive means to treat all children as individuals, and ensure we meet their needs to enable them to thrive and fulfill their amazing potential.

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Hayley Goleniowska

Parent Advocate/Blogger at Downsside Up
Hayley Goleniowska is the author of the popular blog, Downs Side Up, where she writes about life with her daughters, one of whom has Downs Syndrome, and other issues surrounding disability.
Hayley Goleniowska
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14 Comments

    1. I think some kind of ‘professionalism’ prevents them from favouring one school over another. I learned a lot from what they were not saying, and eventually took the hint and visited a school they all mentioned that I hadn’t previously considered. My best support was from other parents who felt passionate about inclusion and the team at Parents for Inclusion were and remain amazing. There are examples of inclusion working for every possible kind of ability and disability. The key is to find a school that believes in it and has the courage to work with you and respect your expertise. That’s not always possible. Mainstream school has worked pretty well for my daughter, but I can clearly see different benefits we would have had from choosing the other option.

    2. Hi David, I think the professionals are there to support but not advise. As a parent I found this unbelievable frustrating, I really did want someone to tell me what to do! But as a SENCO I understand why this has to be the case. I guess some of it is avoiding any fall out if the provision proved to be unsuitable, but also it’s about respecting the fact that the Parent is the expert. I hope things go as smoothly as possible for you all David. Shelley

  1. This is such a difficult decision and one I have faced three times with my daughter. At reception it was easy, mainstream was the obvious choice. Half way through primary it was hugely painful, an emotional roller coaster. She stayed because the tiny school was able to do a bit of juggling, and a child with similar needs joined the class.

    Secondary school was another roller coaster, our local school was not an option which I found painful. The special school was generic so the range was as wide as mainstream. A resourced school was not close enough to home to make friendship easy. In the end my daughter chose the resourced school because she was alarmed by some of the behaviour at the special school.

    None of is has felt like a choice between right or wrong or between a range of good options. All children and schools are different. Whatever choices we make as parents or support our children to make the key ingredients are inclusion and peer support. Where each are found is a pragmatic and personal decision. Meanwhile, onwards with the joyful work to build community and inclusion for us all.

    1. Absolutely onwards and upwards Liz! For me, it definitely made me question my decision making abilities, and for that reason it did feel like could (and at times I was sure I definitely would) get things wrong. Another lesson though and we all come out a little bit stronger I think. Thank you for your comments, so interesting to read everyone’s experiences. Shelley

  2. StephsTwoGirls

    There were tears in my eyes as I read this, as I can already easily see myself in that same position you were in a couple of years’ time. It won’t be an easy decision, and I’m just hoping that I will find a suitable school – I like your phrase ‘Learning Differences’ and I think using that myself from now on will help change my mindset and help me choose what my girl needs, so thank you very much. So nice to hear Georgia is happy – I hope the return to school went well! x

  3. vicky allen

    Thank you! It was a really great article and gave me lots to think about my little girl is still too young for school, but I think it’s an important question to raise! So glad she is enjoying her new school, and it’s a shame that all schools can’t have different ways of teaching rather than a one fits all approach. The plastic bugs idea to teach about insects sounds really fun!!! thinking outside the box! Your honesty about how you felt brought tears to my eyes, your daughter is blessed to have such a great Mum, doing her utmost to help her develop, learn and be happy! I do hope you’ll write us another article about the school bus! thank you for sharing your and Georgia’s story.

  4. Thank you very much Haley for your blog. I was recentlyapproached by a social worker concerning my son who is in the process of being assessed for ASD to consider special school as he is struggling so much in school. I was and still torn to hear that but still trying to process it. At the end of the day, his happiness and wellbeing is what is important.

  5. dee griffiges

    Great post, I could completely relate to your story as, being a SENCo myself, I find it so hard when it comes to talking about my own daughter. She is currently in special school but I don’t feel they are supporting her enough to reach her full potential, after a year of contemplating I now have to think a bit more carefully about what really is best for her. She is happy and loves school, but I feel she would be happy at any school. The provision available isn’t great and my options are limited but I have decided that I do need to do something, as that niggling feeling just will not rest.

  6. Inclusive philosophies can be missing even within special needs environments – so that is something to watch out for.
    From a sociological point of view though, entirely separate places of education for children with learning differences is probably unwise. I think special education needs to be further established within the mainstream – maybe as schools within schools. Otherwise wider communities do not get accustomed to having people with disabilities amongst them. Extra curricular activities are not enough and will become less accessible if children and people are not otherwise exposed to learning differences. And children with learning differences need to find their own groove in a big bad world for their own freedom. Otherwise, on leaving school the options remain limited: remember that employers are the very children your child are growing up alongside.
    I would like to see happy student with learning differences but I would never like to take my eye off the full picture…because the full picture affects a whole life and a whole community.

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