Is there still a place for special needs schools in the age of inclusion?

My heart beat faster than it should, my palms were sweating and my head was spinning.

Finally I had in my hand that small brown envelope with the return address of my local authority on it. I knew what was in it but I could hardly dare breathe as I opened it up and read the first paragraph: I fell onto my couch and cried.

My son had a place in a special needs high school for the coming academic year.

In my whole area there are now only two such high schools and two primary schools that exclusively take children with complex needs.

The vast majority of children with any disability (or additional support needs as my authority call it) are now educated within mainstream schools, albeit in some cases smaller classes often referred to as ‘units’. It’s part of a bigger picture of ‘presumption of mainstream’ which is about inclusion for all.

I must admit I love the idea and principle of inclusion, I just know it isn’t (yet) right for my son.

Had he been offered a ‘unit’ or a mainstream High school I would have appealed to the highest level possible.

My son isn’t mainstream-able and to place him in such a setting would be detrimental to him and every other child.

Yet that goes against all current thinking and policy.

So let me explain: my daughter is disabled. She’s autistic, has an eating disorder, diagnosed with generalised anxiety and selective mute.

Yet she is thriving in an inclusive mainstream setting where her needs are met and staffing is manageable.

Small adaptions such as earlier lunch, communication cards, allowed to eat whatever she’s comfortable with and classroom assistance when required are enough to keep her safe, healthy and learning.

But no amount of extra staffing, small accommodations or adaptions in mainstream would be sufficient to meet the complex needs of my son.

He isn’t just ‘a little delayed’ or in need of ‘extra time to go over something again’ or with support is able to access the curriculum with small adaptions’.

My son is YEARS behind, in fact he’s working at age 2 in some areas and age 1 in others while his chronological age is almost 11.

He’s non verbal, doubly incontinent, with severe learning disability and severe autism.

Even with a one on one support worker he can’t write his name himself let alone access the standard curriculum for his age.

Then there’s his significant medical issues: should a class of mainstream children have to have lessons disturbed while he has an epileptic seizure?

Would there be an on site nurse to keep a close eye on his alertness, muscle strength, and pupils to adequately and safely monitor him after major brain surgery for a brain tumour last summer?

Even the smaller classes of a ‘unit’ for children with additional support needs or autism wouldn’t quite be able to fully meet his needs.

It wouldn’t be safe for my son to be in a busy playground with minimum supervision as he is blind in one eye and has a tumour on the other plus he has no awareness of danger or other people.

He wouldn’t cope with the noise or the sudden movement when the bell rang or the volume of transitions needed in a mainstream high school. He couldn’t ever cope in a dinner hall full of noise and bustle with minimal supervision.

It wouldn’t be safe for him or anyone else.

I whole heartedly agree that for far too many years too many children were excluded from mainstream and sent miles from home to schools for ‘special children’ and excluded from their own communities.

For thousands this needlessly limited their future prospects and isolated them from the communities they lived in, which in turn perpetuated the feeling that anyone with any sort of disability was to be shunned.

I don’t in any way wish for us to return to such things.

But we need to also balance that with the absolute fact that in this current age of inclusion there will always be some children whose needs are so complex that for their benefit, and the benefit of everyone else, specialist provision like a school specifically for additional support needs IS the right setting.

There is a level of need that mainstream, with all the best will in the world, is unable to ‘include’ enough that it is of benefit to the disabled child and the rest of the community.

This isn’t about having wheelchair accessible toilets or a classroom assistant signing the lesson, this is children with complex health and development needs that need major adaptions to the curriculum and structure to the day just to make it into school at all.

As my son starts transition to high school, totally unaware of the day of the week let alone that he will leave his school next year, I am so grateful that even in an age of inclusion that special needs schools still exist and that my son has a place in one.

Art is for fun…but it can also be therapeutic

Art is a fun activity that can foster bonding between friends, siblings, parents and children.

More importantly; it’s just another opportunity to have fun and create memories!

As a pediatric physiotherapist, we try to create sessions that are full of fun, filled with age appropriate activities, which also serve a therapeutic purpose.

There are many ways to help a child actively participate in creating their own little piece of art.

If a child can sit independently or if they’re able to move their hands away from their body while in an adaptive seat, there are several ways they can create a master piece.

One way to set up this activity is to get a giant piece of paper and lay it on the table, or post it on the wall.

Draw a line down the middle, and model what the action is. Strokes can be long, straight, diagonal, or just scribbled.

Of course, the most common way to draw is with chalk, markers, crayons (which now can come in different shapes) or paint, and paper.

A child can finger paint or hold a paintbrush, a bingo marker, a sponge, newspaper scrunched up, or material scrunched up and even taped to the child’s hand if they cannot volitionally grasp the material.

Throughout this activity some things to note are whether the child can maintain contact with the paper.

Some additional benefits include: hand eye coordination, grasp, upper extremity strengthening, range of motion, standing, sitting, weight shifting and even communication.

A fun suggestion: turn on different types of music, and ask your child to color according to what they hear. The strokes may be slow, rhythmic, long strokes or short, sporadic, choppy strokes.

This is always a fun and exciting activity.

During warm weather, you can also use finger paints on a sheet of plexi glass outside, and then spray it off with a hose.

You can paint the bottom of the child’s feet and have them stomp on the floor, paper or grass.

If the child is non ambulatory, a parent can hold a trifold up and have them press against it with their feet.

I even had a little guy roll across a roll of paper with washable paint and he created a beautiful masterpiece!

Art is fun, but can also benefit motor, visuospatial and communication skills. So, seek out washable paint, a variety of shapes and sizes for the crayons, markers or brushes, and try a variety of positions. It changes the whole experience.

Trip to Etihad Stadium

We went on quite a few adventures over summer, as well as trying out new things. Volleyball was a particular favourite of Zachariah’s during a stay and place session at the Hospice.

However, sticking with the sporty theme, there is one day that has really stuck out,the VIP trip to the Etihad Stadium to watch a Manchester City match!

This huge opportunity came as a big surprise over the summer as the sports coordinator from Zachariah’s school was seeking out families who would like to try out their new box.

The school has a special connection with City, they come in and do sessions with the children regularly, therefore the sports coordinator has been involved in making this new box as suitable for children with disabilities as she could.

We would be lying if we claimed to be huge footy fans, but we’ve always enjoyed both Mens and Womens World Cups, especially this year as I went to school with one of the England players and didn’t shut up about it to Zachairah who was very excited.

We do however, have some very close friends who are huge Manchester City fans, and therefore Zachariah was naturally a supporter whether he liked it or not.

The day itself could not have gone any more perfectly, we were treated like royalty from our very first interaction over the phone, to waving goodbye in the carpark.

We arrived a few hours early to avoid congestion, had designated parking and were very quickly greeted at the car by some extremely friendly faces who welcomed us wholeheartedly.

They introduced themselves, one grabbed our bags, whilst the other took control of Zachariah’s wheelchair. It was so lovely!

Getting into the stadium was a swift as could be, we were fast tracked straight through after a sharp bag check (Zachariah could have got the memo and come with less baggage.. 4 packed bags!). We then skipped through the VIP lounge and headed to our Box..The Sensory Box.

We were utterly blown away as the door was opened. We could not keep the smile of our faces as we stepped inside a beautiful space to watch the game. The was a huge window to look upon the match, article grass for flooring, clear walls for simplicity, kitchen accessories, refreshments and place to put equipment and meds.

It was warm. It was safe. It was quiet.

If this was not perfect enough, there was another door. Behind was a sensory room. Lights, interactive floor, bubble tube, vibration. There was a stock of sensory toys and ear defenders. It was perfect. I felt at last we were understood as a family.

In addition to this we also had our own seating in the stadium if Zachariah was able to sit outside and get the full atmosphere of the match. Which he did!

He absolutely loved every single second of it! With so many anxieties leading up, which had previously made going to a football match seem impossible, we felt at ease.

Zachariah shouted when everyone cheered, and laughed when everyone booed. He loved the atmosphere so much.

Although Zachariah was able to watch the game outside, it gave us comfort knowing that if it became too much, we could just pop inside and sooth him in the sensory room.

Having Zachariah’s needs understood and met in such a beautiful way has meant the world to Tim and I.

But we were also able to give feedback and help make it even more accessible, with this new partnership, we can help give other families a time of their life!

We had such an amazing experience and cannot wait to go again, I mean Zachariah has his full kit now, must make use of it.

Kids Like That

Dear Sir,

I heard you refer to my children who happen to have some additional needs as: Kids like that.

In fact, I have heard these words tucked within tainted opinions multiple times when referring to my children, their classmates, or other individuals who have additional needs.

“You must be such a special person to adopt kids like that.”

“What’s the life expectancy for a kid like that?”

“I would never take a kid like that on vacation.”

“I’m just not used to being around a kid like that.”

I can’t quite know what you mean when you use this phrase that attempts to define my children and categorize them with pre-determined worth and purpose polluted with dashes of ignorance and close-mindedness.

Therefore, I must ask: Are my children truly kids like that?

To answer this question I must pose a different question: Kids like what?

If by kids like that you mean individuals who are as beautifully unique as each crystal snowflake that graces the earth with its glorious presence….then yes.

If by kids like that you mean abundantly brave warriors, thrown into the midst of battles they would never choose but navigate while still spreading kindness like confetti and hope like rays of the sun….then yes.

If by kids like that you mean children who often understand the most important things, who are unafraid to cry when life is hard, laugh every chance they get, and love loudly…then yes.

If by kids like that you mean humans beautifully and wonderfully knit together by the hands of a good and creative God…then yes.

If by kids like that you mean the little ones who have grown their mama in endless ways and added every kind of color, magnificence, and meaning to her life….then yes.

If by kids like that you mean the ones who remind me each and every day to extend grace and unconditional love to “people like that”—people like you—who use words as daggers whether knowingly or not…then yes.

So yes. I suppose my precious children are kids like that.

I will always fight for my kids like that.

And despite your ignorance and lack of tact, I will fight for you—the “people like that”—too.

By people like that, I mean people who sometimes say really cruel things.

By people like that, I mean people whose ignorance has deeply cut the hearts of my children and me.

By people like that, I mean people whose own experiences have shaped their hurts and their need to lash out.

But by people like that I also mean the people who are worthy of the grace and understanding I advocate for toward my children.

People like that who are human.

People like that who are worthy of unconditional love.

People like that who are still created by a good God and gifted a unique personhood and purpose to pass on to the world.

The truth is we are all people.

People just like that.


Mama of the kids like that

Our diagnosis journey

From the minute Ryan was born it was clear to the professionals that there was something going on with my newborn baby.

Unfortunately, things were pushed under the carpet and they focused on working towards sending us home as a family and not telling us the full picture of what had gone on.

For the first 4 weeks of Ryan’s life, I was under the illusion that he was healthy! we were in a bubble of happiness, he was settled, he never cried, he slept.

I was waking him up through the night to give him a bottle, I was checking him to change his nappy. He made no signs he was ever unhappy.

Being a first time, young mum I had nothing to compare him too. I thought I had a laid back easy going baby.

After these 4 weeks, everything was beginning to change. He failed his hearing test. He was screaming throughout a bottle, he wasn’t meeting his milestones.

There was something extremely concerning going on. I googled everything, I worried myself sick.

I had convinced myself there was something wrong with his little brain, I just knew there was damage but I never expected to ever get the answers I did.

My GP doctor referred Ryan back to the hospital he was born at and expressed her concern for his delayed development.

We were offered an MRI and a few days later I was told to come back in for the results. My 13-week old son was diagnosed with Cerebral palsy. At that point, I felt as if my life had fallen apart. I didn’t know what this condition meant for us I honestly couldn’t have even told you what ‘Cerebral palsy’ was and here we were as parents to the most beautiful baby boy who was living with the condition.

The paediatrician asked me if we had any questions and the only question I could ask was ‘does this mean he could die’.

This question will always haunt me because I know his life will never be guaranteed, I can’t prevent infections I can’t wrap him up in bubble wrap and keep him safe forever.

That day when I went home I sat and stared at him. I cried.

I was angry that this happened to us, that this happened to him. I questioned if I would be fit enough to be his mum and at that moment I knew that he was given to me for a reason.

I promised him I would be the best mum he could ever hope for. He deserved a family that loves him and that’s exactly what we have given him.

Fast forward a bit and bottle feeds turned to NG feeding because he was aspiration on his milk. I never learned how to pass that NG tube because for me personally, it was a step too far.

I couldn’t bring myself to be responsible to change that tube. I couldn’t bring myself to be the reason my son was screaming helplessly, I wanted to be the person who cuddled and kisses him and reassured him he’s was okay.

The NG passing was the job for our community nurses. This later changed to button feeding. Bolus feeds has turned into pump feeding.

When Ryan was around about 1 we discovered that he was epileptic, so we have learned to adapt our life’s round unpredictable not so often seizures.

He now also has a dislocated hip which is another worry on top of everything else going on.

As he has gotten older we have come to accept that with his condition his body can and will change.

Things that were never once a problem because of a problem. One diagnosis always at one point leads to another!

Our whole life will be around management for Ryan. Making sure he’s got the essential equipment for postural management.

Making sure he gets the support he needs he regular physiotherapy he needs. Making sure his needs are always known and forever being his voice.

Being a special needs parent – I love it because:

Special needs parenting is demanding, exhausting, chaotic at times but it’s also rewarding, life changing and I love it because:

It’s all an adventure: every day is different; it’s all about what you make it.

Not every day is necessarily an exciting adventure but I find at the end of every day there is something positive to take away and if I think about our lives over the last few years it’s definitely been an adventure full of challenges, new experiences and it’s changed our whole outlook on life for the better.

It’s made my faith stronger: I believe in miracles, I believe in proving medical professionals wrong, I believe in achieving milestones that were never thought possible.

I believe that my boys are here for a reason and I believe that I’ve found my purpose in life.

We get to see real kindness in action: we’ve had volunteers come to help with our boys, we’ve had people support our charity fundraisers, we’ve had people ask after our boys and we’ve had people give up their own time so we can have time out.

In the whirlwind that we sometimes live in as special needs parents we get to meet people we might never have come into contact with, the world is full of the loveliest people and we get to see that on a daily basis.

We celebrate the small stuff: every tiny milestone for us is a big deal so in our house we celebrate.

We appreciate the small things that maybe others take for granted and I love that we get to be free of the comparison stuff; our boys are different, they aren’t like everyone else.

I love that we get to parent in such a way that removes the pressure – we tell our boys daily that they are unique, they don’t have to keep up with everyone else’s achievements because they are amazing in their own way, they will achieve different goals and that is absolutely ok with us because they make us proud daily.

I’ve learned to accept: I love that I’ve learned not to waste time thinking about what might have been but that I focus on the now and that I can trust that however things turn out, it will make me glad that what might have been never came to be.

In my “Former Life”

When I was in High School, I aspired to someday become a Special Education Teacher. As part of the curriculum of my 11th grade Psychology class, we spent time assisting in a Special Ed. classroom.

As much as interacting with those amazing children fed my soul, and left a lasting impact on my heart, I realized quickly that it probably wasn’t my true calling.

I felt that I lacked the patience to be an effective teacher/caregiver. I feared that I was without the fortitude to teach such vulnerable and completely wonderful individuals with disabilities.

As much as I treasured my time volunteering each week, as a career, I knew I wasn’t going to be cut out for it.

After college, I loved my job in the field of Human Resources. I always found satisfaction in advocating for employees.

A day’s work included contacting insurance companies and assisting employees in their battles to have medical claims approved.

I was well-versed in FMLA, HIPAA, 401k, and EOBs. I distinctly remember a situation in which an employee needed help acquiring vital Durable Medical Equipment; we fought together to ensure that he received it.

Who would’ve predicted that in ten years, I’d be living out the same frustrations on a very personal level?

In that former life of mine, I never could have envisioned that I would someday be an Autism mom or the caregiver of my own child with disabilities and complex health care needs.

Suddenly, I found myself knowledgeable on a whole new list of acronyms: PT, OT, IEP, 504, MRI, IDEA, KAFOs, SLT, FAPE, and so many more.

Autism and genetic disorders were never on my radar and I thought I had my life’s plan all mapped out.

There was no crystal ball. I could not foresee that I’d be trading in insurance arguments from my office desk to hashing out similar conversations from my own kitchen table.

I couldn’t have anticipated that I would someday be pleading with insurance companies and DME providers over necessary medical equipment, and advocating on every front, for my OWN children.

Becoming a Stay-at-home Mom wasn’t ever part of my plan. I hadn’t prepared myself for a future that included becoming an expert on my son’s Autism Spectrum Disorder or an authority on my daughter’s rare chromosomal disorder.

But, I also never knew that my heart could hold SO MUCH LOVE and dedication for the little people that mattered most in my life.

Looking back, there were various moments, snapshots from my former life, that were actually stepping stones. They helped paved the way a bit for the uncharted road ahead.

It’s hard to remember exactly who I was back then.

Parts of that girl are still in me; I’ve retained my drive and fire to help others, and I wholeheartedly use them to try to be the mother that my children deserve.

I wouldn’t trade the life I have now for my past, or for any other life.

Sometimes when your path veers drastically in a different direction, and you feel you’ve gone off course, your eyes become open to what is TRULY important and meaningful.

Life throws you curves that reveal to you how strong and patient you really are.

I have a beautiful son and daughter; they are my life’s greatest work.

I’ll pour my heart and soul into fighting for them, as long as there is breath in my lungs.

This role is harder than any other that I’ve ever taken on. Yet, it is hands-down the most rewarding and fulfilling. I wouldn’t want to go back to my former life.

I count my blessings in this life that I lead now and know greater joy than I ever thought possible.


The ever changing self

I have felt so much hurt and pain in my lifetime. I’ve been through abandonment, heartbreak, loss, family struggles and so much more.

These have all shaped me and changed me along the way. I mean we can never truly stay the same as everything around us changes from day to day.

Events, people, and experiences all contribute to our growth and our personality. Going to University, getting married, becoming a Christian, leaving home.

All these things helped form another version of myself contributing to who I am today.

That all being said, no change has been as dramatic and fast paced as becoming Mummy to a severely disbaled child with ongoing health needs.

Being a mother and carer to Zachariah has been my biggest change to date. More so the last 12 months.

I struggle to know who I am. I feel slow in the adaptations as I struggle to keep up with my own emotions throughout the change. I have lost more, but gained more over this period of time than ever before in my 29 years of life.

I have extreme highs, where I have so much to give. I feel on top of the world and feel purpose.

This summer has been a particular highlight, as I had my boy home with me,  felt in control.

We had fun together, we did new things, we relaxed together, and we stayed healthy! I felt I had the power to keep Zachariah well as I was his sole carer.

I knew everything and could intervene from just the smallest of symptoms.

I felt purpose of being his Mummy and carer, I knew what my role was and who I was meant to be.

Then came September. Second year of school. My boy, who I had spent so much time with was now going to be away from me 7 hours a day.

The walls literally came crashing into me, making me feel claustrophobic and anxious. I was in my head too much, I felt anxious as I thought about Zachariah at school. I lost my identity.

I began thinking about finding a hobby, finding a job.

As before the summer I had dropped everything due to the struggles of juggling everything, I needed time out as I began to feel traumatised from Zachariah’s recent health scare, which I blamed myself for, as I took my eye of the game and became too busy to keep up with all of his needs.

I was exhausting myself. I still am!

I’m confused as to what I am meant to be doing with myself. Where do I begin? Who is Rochelle besides being Zachariah’s Mummy and Tims Wife.

I feel like I have exhausted my friends with my constant need to feel worthy, I have become a bit too much for those around me, as the need to care for someone whilst Zachariah’s in school is overwhelming.

I can’t get a job. I’d either be fired or I’d experience a huge mental breakdown.

I’m struggling to take up hobbies, as errands tend to get in the way or the walls come crashing again and I panic about leaving the house.

Friendship is all I need right now, and I will never take this for granted.

I know I’ll be OK. I know this is a season. And I know I am not the only one feeling this way. So please reach out to friendly face if you do and talk through it.

Find your identity once again, it’s there, it’s just ever changing.

*Think wheelchair*

We went to the Bristol balloon festival recently. We set up our space 2 hours early. We were behind one other group who also had blankets and then there was a couple at the front sat in chairs.

We had a great view of where the balloons were going to be. This was on Ethans bucket list to go to the balloon festival and see the night glow.

About half an hour before it was due to start a couple arrived and stood right in front of the picnic blankets.

Soon people followed suit. The family in front of us stood which blocked all our views. After kindly asking them to move over a bit. They did and apologised.

Within 10 minutes we were surrounded by people standing up. Which resulted in our view in the picture above. We could no longer see anything at all.

Now me Steve and the kids could stand, Ethan and my mother in law who are both in wheelchairs couldn’t stand so therefore couldn’t see.

Not one of those people looked to check whether there was room for them to stand at the front, no regard for anyone who had set up early and certainly no thoughts about those in wheelchairs that cannot stand.

I want to encourage you to ‘think wheelchair’ wherever you are. Especially when you are watching performances of anything.

Tell your friends, teach your children. Spread the word to check where you are and allow those who can’t move to be able to see and enjoy just like you can.

Now unfortunately this is not a one off situation. This happens wherever we go.

Being in a wheelchair or pushchair or anything that stops you from fully seeing what’s going on around you is not unusual. There are lots of people who need different access to situations.

When was the last time you thought about what others can see when you’re out watching something.

Maybe you’re at a carnival, or a show. A talk at a zoo or just simply admiring the animals at an attraction.

Have you ever looked around you and wondered whether your actions or position affects anyone around you.

The answer is probably either never or not recently. This is my job to bring this to your attention. Wouldn’t it be fantastic if we all were included. If we all had access to everything. I am starting a new campaign called “think wheelchair”.

I want to encourage everyone to think whether a wheelchair user can access things around you.

Being in the wide world is not easy as it’s not set up for wheelchair users. Why not help me spread the word and start to change to minds of those around us to thing of others before themselves.

Let’s get everyone involved and allow everyone the chance to experience everything in a level appropriate for them.