Halloween in a CP World

Halloween used to fill me with so much excitement – I’m not even sure why.

I don’t like sweets that much, fake blood makes me feel sick, my eczema does not allow face paint, my anxiety makes me jolt with surprise every time someone knocks on my door.

I think it is the “rock chick” in me… the darkness, the time of year, the nice leaves and so on.

It has kind of taken on a new meaning for me now I have a child.

When I was pregnant I even imagined how Halloween might look for my future child and me.

When I was a child I used to typically dress as a witch or a vampire and I would get taken to various neighbours houses and also to trick or treat my grandma. It was all very exciting (except for the time I got a banana as a treat. Or the time the vampire blood made me be sick and then I was too ill to enjoy my treats).

Of course, fast forward a few years and here we are in the world of cerebral palsy.

A world I did not expect to become a part of. A world I am still finding my feet in and trying my best to navigate myself and my child through this turbulent venture.

I would be lying if I said my heart doesn’t ache a little at these events… I would very much like to enjoy Halloween how “typical” families do, but in a way it’s kind of cool finding our own way of having fun and learning.

Also, in some ways I think it’s a bit of a silly thing to celebrate… a bit like bonfire night and Valentine’s Day.

But I suppose back when I was a child these traditions held a real place in my heart and brought great excitement to my life, and we need to continue that into future generations.

This is our third Halloween together. Last year was great.

Amy’s respite centre had a Halloween event on… there was sugar skull decorating, a buffet, and generally an amazing atmosphere.

I like any event where there is an equal number of wheelchairs to mums.

I like it when I’m in a room and you’re wondering whose feeding pump is alarming. It brings me comfort… this is normality, this is our community, and we are very lucky.

This year I expect I will dress Amy and I up, and await trick-or-treaters.

Amy has lots of cool lights so I plan to light up the front room bright green.

I don’t think cognitively Amy understands these seasonal events yet. I am already trying to teach her Christmas songs so there are no sensory issues in nursery when songs she doesn’t know start to be sung. (Honestly, if you sing the wrong song there WILL be screaming! So far Jingle bells is accepted.)

I have seen so many people talking about taking their child out in their wheelchair trick or treating and so on.

I know for a fact that there will be huge temper tantrums if I even try to leave the house with her after 6pm…

..also I don’t always like the thought that we might scare someone or annoy them by knocking on their door.

I worry too that if I did take her she would find it pointless that she is being given sweets when she is unable to eat. I certainly can’t go round insisting people hand out electronic switch adapted toys now can I?

This year we have a few really cool all singing and all dancing Halloween toys. One sings the monster mash and the other walks around and does a spooky tune.

She seems to really like them. I am hoping that these are toys we could maybe bring out each year to remind her of this particular event.

We’ve had a lot of fun in the supermarkets looking at all of the noisy, glittery, spooky decorations;

It is like a free sensory treat going to shops and garden centres at the moment and I think I love it as much as she does!

I do find that with each year the range for Halloween becomes more and more extensive.

We have managed to buy so many light wands… the sort you would use for visually impaired children and pay triple the price for on some websites.

The same goes for Christmas decorations… the beads, lights, tinsel… perfect for children with visual impairments like Amy and so good for exploring textures and sounds.

So I think this year it will be a quiet one… stay in, hand out treats, most likely watch videos on the iPad.

But I hope we get to carve a pumpkin together… a good sneaky opportunity for messy play.

Any new activity that we do will be helping shape Amy’s understanding of the world and it is so important for us special needs parents to really nurture their curiosity…if they can’t get out to the world we do need to try everything in our power to bring it to them and make sure they are included like everyone else.

I hope that by next year she has a better understanding of it all as she will be older.

I would love to be one of those parents you see that has decorated the wheelchair in a really elaborate costume that looks really cool.

Maybe one day we will trick or treat like other families do.

I hope that further into the future she will share my love of cheesy Halloween films and will sit and binge watch the lot with me!

Who knows?

Whatever you do this October, have a great one!

I’d also love to know what other families similar to ours do at this time of year?!

Our Little Boy Starts Big School!

When I started my campaign to secure Jenson a place at Victoria Education Centre to be honest I didn’t know exactly what I was fighting for.

I just had a feeling that this was probably going to be the most important fight of my life…..

Well, Jenson started in class Explorers in September this year, and now half a term in, I now know EXACTLY what I was fighting for.

And yes, it really was the most important fight of my life!

People would ask me “Why do you want him to go to that school?” and I would babble something along the lines of ‘integrated therapies’, ‘inclusive approach’, individualised learning’.

But to be truthful these were just abstract phrases, the meaning and importance of which I had not fully appreciated at that point in time.

Seven weeks into Jenson’s school life at the tender age of three, I can wholeheartedly confirm just how crucially important these factors were in choosing a school for Jenson and also in getting him a place at this school at such a young age.

I am staggered and overjoyed with the enormous progress he has made in this short time he has been attending.

Equally, none of the improvement Jenson has made comes as a huge surprise to me because from the moment I met Sue, Gill and the team I was absolutely certain that great things were about to happen.

I guess I always just pictured school as a place for learning the conventional things in life, albeit in our case tailored to Jenson’s special requirements.

I had pictured him in the Explorers classroom making glittery pictures, bashing a tambourine, learning the names of farmyard animals, maybe even swimming with armbands.

What I had failed to realise was that his, ‘learning’, journey was destined to be so much more holistic than that.

Jenson’s teachers have developed his behaviour, his patience, his social skills, his choosing and communication.

They have taken it upon themselves to get Jenson drinking water and eating a rounded selection of foods, a feat that, for anyone who knows the battle we have had with Jenson’s extreme psychological aversion to feeding, is nothing short of incredible.

Every little issue I have thrown at them via the student planner and my incessant emails and phone calls (spot the obsessive mother!) they have taken my requests on board and addressed my questions and concerns.

Nothing is too petty or too bothersome for them.

In the mornings we are awoken by Jenson exclaiming, ‘Ooool!’, through the baby monitor (his version of ‘school’; his speech is improving too, thanks to Nicky!).

The journey to school is filled with anticipatory excitement, and as we pass Tesco and approach the school, the excitement mounts; ‘Ool, ool!’

When waiting in the entrance hall for his teacher to collect him Jenson cannot contain his excitement and often slips in through the automatic doors, much to Chris’s frustration!

Typically half a dozen staff members will pass by and without exception exclaim, ‘Good morning Jenson!’ and he will often reciprocate with a cuddle and kiss.

At first I would be slightly embarrassed and apologise while peeling Jenson away from his embrace.

But the Victoria experience has taught me that our kids are accepted for who they are; diversity is a great thing!

To name a few notable milestones, in the past seven weeks Jenson has learned to feed himself, drink water, swim with armbands, walk confidently with a walker, answer simple questions, and abide by routine and structure.

If these can be achieved in half a term at three days per week, I am very excited about the future!

As far as proud-mummy-moments go, they don’t get much better than seeing your child receive a Student Achievement Award, and over the past seven weeks Jenson has accumulated five!

These are presented during the lovely Lower School assemblies which have been an honour to attend.

Yesterday was the beautifully delivered Harvest Festival.

Next month, we have the Christmas Fayre. I have joined the Friends of Victoria group and plan to become involved in the Parents’ Participation Group.

My calendar has never been so full! I have met some lovely mums and carers, and some amazing children.

Each and every member of staff without exception has made us feel like their sole purpose in life is to advocate for our child, to develop him, protect him and achieve the very best for him.

For the best part of Jenson’s life we have felt like we are on the outside looking in.

Now for the first time, Victoria has made us feel like we are part of a family, a community, and that we are protected, accepted and cared for.

I look forward to being able to write again in a few months about more new milestones that Jenson has achieved, and to continue this exciting story.

Has Anxiety Stolen My Little Girl?

I can’t help but wonder why such aggression and violence and inconsolable hysterical crying can overcome her tiny little body in a fraction of a second.

Her body wracked with sobs, her face and hair soaking from sweat and tears, her body and soul have been taken over by this crawling clawing anxiety that robs her of rational thinking and bodily control.

Her arms and legs flailing, kicking anything she can, just to release her mind of the pain and feel it in her body, slapping her own face and pinching and biting her
arms as if she’s trying to release this harrowing, inhumane feeling to rid herself of some kind of excruciating pain.

She screams like something is inside of her cutting its way out, tearing her flesh.

She thrashes and throws and trashes and smashes anything or one in her path.

She is lost, she is not herself, she is someone else. I wish I could help.

She’s incoherent; a black fog has descended over her body and stolen her soul. Ripped it to shreds and it lays strewn across the room.

Tiny little pieces of my child, quivering and fragile, shaking on the floor, red faced and blurry eyed, the energy has been sucked from her body and as she lays, sobbing and you stroke her hair, she folds into your body, snuggling into every curve of your being, fitting perfectly, connecting to you like a long lost piece of puzzle that has crumpled at the edges.

All you want to do is lie here with her for an eternity, hold her close, take away her struggles and her fears, release her of her unforgiving anxiety and free her soul.

She needs a rest, her tiny body is tired, and hurt, and she needs to be released from the clutches of anxiety that grip hold of her so tight it’s squeezing every chance at happiness she has and crushing it to a pulp.

It’s taking my child.

Every week, every month that passes it gets stronger and stronger, as she grows so do its clutches and so does its strength.

It will not release her. It will not give up, for it has taken away the fight in my child and left me with a shell.

Broken. I want her back, I want my child.

But forever I shall fight.

And forever I will hold her close.

I will cherish those short moments that she laughs, I will hold the memories of those brief smiles dear to my heart, I will never let them go.

And I hope that one day, those clutches on my girl are loosened and she can wriggle out of them to me, becoming mine again to wonder absolutely free.

The Simple Pleasures of a Special Needs Parent

 Our normal isn’t so normal. But we label it as such.

When you ask parents what their idea of a luxury might be, you might think that special needs parents would come up with ideas grand and bigger than life.

That we’d ask for all inclusive vacations, a brand new wardrobe, a $5,000 shopping spree, or cosmetic surgery to erase the added worry lines from our face and bodies…

But in reality, you’ll find special needs parents wish for nothing grand, overly spectacular or even expensive.

I asked a group of special needs parents to tell me what their simple pleasures would be and here are their responses:


Finishing 1 cup of coffee without having to microwave it four times before I finally give up and throw it out.

Pattie Ruwwe

Just having the time and space to breathe, without fearing or knowing that I am needed.”

Matthew J. Cerrato

Using my work PTO for an actual day off instead of a doctor’s appointment!!

Carrie Berry Paul

Expensive iced coffee, and by that I mean a large, maybe a flavor shot, from Dunks or a regional chain, Heavenly Donuts.

Nora Lyons Sauter

I want a day to lay on the couch under a blanket, watching Netflix.

Jennifer Cunningham

A quiet dinner date at home with my hubby. Simple… but impossible! 

Caren Sue Evans

Shower and a hot cup of tea for me – pure luxury.

George Morgan

In the face of adversity special needs parents wish for the smallest of pleasures.

Perhaps that comes from a place of wishing for all of their economical resources to go towards helping their children, perhaps they’ve come to understand what matters most in life, so small rewards feel huge in the larger picture of their days.

Perhaps we’ve learned the art of needing less so our children can have more.

When a special needs parent is born, a kind humbleness moves in.

And you’ll soon find special needs parents find happiness in small, unique and unexpected ways.

What is your simple pleasure?

A World Without Down’s by Sally Phillips

Everything has a crack in it, it’s what lets the light in.

The reaction has quite literally overwhelmed me.

A World Without Down’s? is a beautiful film, which not only tells Sally’s personal story of parenting three boys, one of whom, Olly, has Down’s syndrome but also explores society’s attitudes towards disability as well as the ethical implications of the way in which non-invasive prenatal testing (NIPT) is being delivered.

The film was beautifully put together, combining humour, heart and fact.

It weaves a vast array of experiences together with interviews from scientists, ethicists, champions with Down’s syndrome, parents and those who have experienced or offer support following a termination.

It also provides a disturbing look into a possible future without Down’s syndrome when Sally visits Iceland – where they have experienced 100% termination rate for babies with Down’s syndrome in the last five years.

Is this where we want to be heading as a society, with other genetic conditions following suit?

Is Down’s syndrome just the canary in the mine?

It was always going to be an emotional and emotive subject, and in discussing its themes the more vocal of opinions reflected perhaps viewers’ personal experiences and thoughts before they had watched.

These ranged from cries for support, guilt, regret, certainty, a need to be heard, requests to work together, frustrations at lack of information, fear of choice being removed and relief that at last someone was putting a spotlight on our minority group.

Every media outlet covered the story, from every possible angle.

Many tears were shed. It was a cathartic week for many.

Having watched a World Without Down’s? several times now, I have gained something new with each viewing. The piece works on so many levels and Sally succeeds in maintaining balance whilst bringing emotion to a topic that, sadly, has often had that crucial human dimension removed as it is debated like so much hot air, with unique individuals reduced to a list of characteristics in a medical book.

A feminist, Sally is not against screening, nor terminations, ‘there are no bad guys in the film’ she told me.

But this high-profile Mum saw the introduction of NIPT and public debate around late term abortions as a pivotal moment in disability history in which to assess and redress the balance of information given to women during pregnancy, for only with the full picture can prospective parents make fully informed choices that are right for them.

Her film pleads for greater public debate…

…for stereotypes to be challenged, for the medical profession to listen to families’ narratives and for those with the condition to also be consulted.

As one GP Steve Laitner wrote to me, “Choice that is not informed, but moulded by societal discriminatory pressure is not really choice at all.”

And in just one hour of television Sally and film maker Clare Richards have certainly succeeded in starting those important conversations.

One parent wrote:

“I think what the programme portrayed beautifully was that science and the test are simply tools which we can use.

Our ethics will design how we use them and our humanity will choose how we help each other.”

And yes, the film has cracks in it, it is a start point and could have been easily extended into a comprehensive series, but just as Sally quotes Leonard Cohen towards the end, we all have flaws.

It is the cracks, dear reader, that lets the light into our lives. And that is very illuminating indeed.

Watch A World Without Down’s Syndrome?

I’m Sorry

I’m sorry I didn’t have the time to fill out all those parent questionnaires or online surveys, for the school.

I’m sorry I’m always late with dinner money, and trip fees.

I’m sorry I never manned a stall at the summer Fayre, or even attended to support you. We really wanted to come I promise we tried.

I’m sorry to my child for forgetting to print those important family photos that you need for your topic, “all about me” I feel really bad I could’ve cried when I saw all the children bringing theirs in and you were empty handed.

I’m sorry I forgot your PE kit again, I did bring it back for you though. I tried.

I’m sorry that I forgot it was your class assembly this morning, when you got a certificate for settling in to year one really well. I told you a little lie. I wasn’t standing at the back; you see my life has been taken over with Special education meetings and hospital appointments. I forgot. It hurts.

I’m sorry that we forgot it was your friend’s birthday party on Saturday, I wrote it down, and I RSVP’d, and somehow the weekend just passed us by. I’m sorry I made you miss you out.

I’m sorry I sent you to school in non-uniform, a week early. I didn’t get the memo that it had changed.

Again I’m sorry I sent you in uniform when it was, Dress-as-your-Hero day, I must not have got that memo either…….

When you both were waiting for me on the field in school for our family picnic day, I’m sorry I didn’t have a chance to tell you I wouldn’t make it, I was called to an urgent meeting and it was vital to attend, I made sure you had another parent to sit with though, but it still doesn’t take away the guilt I felt that day.

I’m sorry I never made it to your trip with preschool, I was supposed to come but I had to work that day, I was told you had a good time.

I’m even more sorry that when it was your sister’s turn for that trip two years later, I had to arrange for her to go with staff because yet again another VERY important appointment was made at the chosen SEN school and I HAD to attend.

I’m even more sorry that because she didn’t have an adult with her she was allowed no ice cream, she was not allowed in the splash pool, and she burnt to a crisp! I was very sad that day.

You see, being a parent of a special needs child impacts the whole family. Not just the child with special needs.

There are lots of things I could have written here; lots of things I’ve missed out on, my children have missed out on.

I feel very guilty for not being able to fulfil everything that is required of me as a parent.

But most of all I’m sorry that this has to happen at all. I’m sorry for every other parent of children with disabilities that feel like me on occasion, or even for some people every single day.

You shouldn’t feel guilty. And you shouldn’t feel inadequate.

You do your best every minute of every single day. You are a GOOD parent.

You see, the reasons that I missed loads of these things. Or forgot to do others isn’t because I’m a bad parent; it isn’t because I don’t care or I am lazy or just so damn unorganised.

It’s because I do care, and you do too. Because each time I’ve forgotten or missed something, is because I was advocating for my child, or working to provide for them, or just simply because there was so many things to organise in my brain for all of my three children, two with disabilities and a disabled partner that I don’t get to enjoy you as I should.

I want to enjoy you; I want you to enjoy me. But I need to protect your future. I need to advocate so strongly that I’m missing out on your happiness.

I’m hopeful that this is beginning to change now we have the appropriate schooling for you all. It took a few years, and a lot of hard work. But the impact it’s had already is immense.

I love you all, and I will never give up. But while things are settled, we will have fun and we will enjoy each other.

So if you feel like a failure, just remember that while you were missing that assembly, you secured an EHCP for your complex child with numerous disabilities.

And when you couldn’t make that summer fayre, you’d just spent two hours trying to calm an anxious child in the middle of a meltdown.

When you forgot to bake those cakes, it was because you were reading soothing stories to your children who couldn’t sleep that night, and placating the others because of the violent outburst that ripped through the whole family.

When you missed those school trips, and family school gatherings, you were accompanying your disabled partner, or your disabled child to a very important hospital appointment for an MRI scan.

Be proud of yourself, be proud of your children and remember, that love is what is important.

And above all else, give yourself a break; stop being so hard on yourself. You’re doing an amazing job.

V Is For Voice

But then there have been the odd occasions, the seemingly random pure miracle moments when we have heard her voice.

Not the joyful babble, or that constant stream of jumbled consonants and vowels that resembles a difficult round of countdown, but an actual voice with words.

In seven years here is what she has said:

“Elephant” whilst sat on my lap at Grandad’s and looking at a copy of a colour supplement I pointed to a photograph of one on the cover and she repeated my word. Only once mind and nothing else after that.

“I’m a good girl” whilst sat on my lap the day before my sister-in-law’s wedding. Luckily my husband walked into the room at the time and heard her, otherwise I doubt he’d have believed me.

“Yes” shouted emphatically into my mother’s face when she asked Lucy if she was bored, my poor Mum promptly burst into tears.

“Yes” shouted straight into my husband’s face when he asked if it was time for her to go to bed.

“More” for her favourite petit filous fix, but she has since given up saying it verbally and now signs “more” in Makaton instead.

“Love you” which punctured the air like an arrow at 4am on our first night on holiday when my husband and I were so shattered with her staying awake all night. Needless to say we forgave her instantly!

“Really?” said this weekend as she was sat in her activity chair in the kitchen. I was unloading the dishwasher and nattering to her about our plans for the day ahead.

Lastly, and perhaps most surprisingly…

“Planet Earth!” whist watching Mr Tumble (or rather Justin) on the TV as he and two children went to the Planetarium.

She repeated their words and I very nearly ironed over my hand that was gripping the ironing board in shock.

When she speaks, or shouts, it is with a clear little voice free of any impediments and quite grown up. #

It happens very infrequently, seemingly randomly and she won’t repeat it so I can’t film it as proof!

I think it’s odd, to say the least, that she clearly can hear, understand and form words not always in repetition but in answer to a question. It’s “odd” because all the evidence from her speech and language sessions would suggest she is way, way behind being able to do this.

As beautiful as those moments are, they are also frustrating as, if it’s possible once why isn’t it possible always?

I battle with feeling hugely grateful that I have ever heard her little voice at all, with feeling angry that there must be a way of helping her to speak daily.

It would make all of our lives so much easier.

I guess we will just have to wait and see what happens, time as they say is a great healer.

We have all the time in the world (or planet) for her to find her voice.

How To Avoid a Sensory Nightmare at Halloween

Costumes adding to the challenge with children who cannot handle hats, Halloween make-up or textured outfits can cause a child to want to scream, cry, itch, gag and in even extreme cases, vomit.

It’s a holiday celebration that can be complicated for the child with SPD. Yet children with SPD sometimes still very much ache to participate, they just need avenues to pursue in order to help them do so.

Here are four tips on how to help your child with SPD through the Halloween season:

Pick Sensory Friendly Costumes:

This could be as simple as a Superhero or Disney themed set of pajamas. Don’t be afraid to think outside the box for physical comfort and practicality.

Sometimes a simple sweatsuit set with a cape can work. In extreme SPD cases, trick-or-treating is also fine without a costume.

Maybe even a simple temporary tattoo on their hand is all your child can handle or needs. There is no rule that says costumes are mandatory to participate in Halloween activities.

Avoid Unnecessary Scares:

Try to remove the fear from the fun. Try to find fall activities that don’t have the potential to scare, but offer a light autumn feel instead.

Work on making good memory associations with the season, perhaps a warm cup of apple cider stirred with a cinnamon stick on a crisp fall day, craving a happy pumpkin or stenciling a sweet design, or sit on a bench, feel the breeze and watch leaves fall from the trees. Find soothing parts to the season that your child enjoys.

Decorate Lightly:

While the scents of pumpkin spice candles and cinnamon and nutmeg speak tall tell signs of fall and Halloween on the horizon, smells can be particularly bothersome for the child with SPD.

Sometimes trading out the scented candles for pre-lit colored and patterned is easier to have in your home with a child with sensitivities. Excessive bold colors can also be overwhelming. Instead of coating your house in head to toe shades of orange, seek easier colors like blonde or white pumpkins. Avoid gruesome décor, and focus on an autumn inspired theme.

And if all else fails do not even flinch or give it a second thought if you forgo Halloween or fall decorations in your home altogether.

Avoid Halloween Parties:

As much as children love great parties, sometimes saying no this time of year is best.

Halloween parties often come without controlled environments, children in a variety of different costumes and hyped up on loads of sugar is enough to send any person without a sensory challenge over the edge sometimes. Plan your own family participation party at home.

Designate a special night where immediate or close family gathers together for your own Halloween party in the comforts of your own pajamas. Maybe that’s watching a fun Halloween Mickey Mouse show after you make popcorn balls and candied apples. Make the party tailed to you and your child’s needs.

Guaranteed it will also make for some fantastic memories to last through the years.

Feeding Your Child, “Real”, Food On a Pureed Diet

When your little one has multiple disabilities and lacks the ability to chew, seriously unique challenges are posed.

In fact, before we found our Ninja Blending System, mealtimes were completely stress-filled and would send me into a tailspin.

LUMPS…they were the dreaded culprit that almost always led to vomiting; thus ruining her entire eating experience.  Food aversions always followed and we’d have to mark off another food that our daughter would not tolerate.

“What is she going to eat?”  “How can she survive on only yogurt and applesauce?” and “How will she ever gain weight?” were questions I would beat myself up with on a daily basis.

Sure, store bought baby food was an option, but while convenient, it severely lacked taste, excitement and most importantly, calories.

They were virtually just bland vegetables and water.

Healthy, yes.  Substantial enough for a five year old, no.  We have always supplemented her diet with Pediasure, but we wanted her to take in plenty of REAL food as well.

When a child has growth restrictions, and an inability to chew, you really have to get creative.

Thanks to our awesome Ninja, I am able to transform everything from homemade lasagna to roast beef and potatoes into a lump-free meal that my daughter can enjoy.

Pasta with chicken and asparagus blend well with some water and a little olive oil for added calories.

Chicken and rice with mushrooms become a perfectly blended puree with the right amount of heavy cream added.

She LOVES to eat, and it brings me great joy providing healthy, calorie packed meals for her…her way.

We have a letter from her pediatrician on file at her school, requesting that the cafeteria puree her meals.  Sometimes, they get it right, and she is able to eat what her classmates are having for lunch.

Other times, to save her from having to endure a pureed hotdog (yuck!), I will prepare her lunch for school. Sweet potatoes with chicken, heavy cream, cinnamon and a dash of vanilla is one of her favorites.

Low muscle tone and poor coordination may have delayed her chewing ability, or possibly even permanently prevented it.

However, I don’t let that stand in her way.

I am grateful that she has the opportunity to relish wonderful things like spaghetti and meatballs.  I even sneakily hide squash and carrots in the sauce for extra nutritional punch, as the mother of a typical toddler would.

My daughter is a very special little girl, with a vast array of very special needs.  Food is an area that we can easily work around.

It does my heart good seeing her enjoy real food, even though she is on a pureed diet.