Special Needs Parenting: Elephants in the Room

But in my case it is true. I am an older mother; I was already in my forties when Freddie was born. Which leaves me with an elephant in the room.

No, two elephants in fact.

The first elephant is one that a few (rude) people do occasionally point out – the ‘what-will-happen-to-him-when-you’re-gone elephant.

The second is one that no one ever mentions, even though it is a great, grey and wrinkled matriarch that sooner or later casts its shadow across every woman. It is the elephant of change.

The Change.

Yes, I know it is an issue for all ladies, but, as I am discovering, it is a particularly troublesome one for mothers of children with special needs.

Take my own case. Freddie is six, but developmentally he is still a toddler. Developmental Delay does not just mean that a child will hit the milestones later, but also that each stage of the process happens much more slowly.

Freddie gets frustrated for pretty much the same reasons as any two-to-three year old does, and his behaviour is challenging because of that.

But he’s been going through the ‘terrible twos’ for three years now, after effectively being a baby for three-and-a-half.

Any parent will tell you that the baby and toddler stage can be physically and mentally draining.

We special needs parents have added emotional stressors too. We have been going through this most demanding phase of childhood for an extended period, at a time when my resources are at their lowest ever ebb.

In a few short months I have gone from being someone who thought nothing of walking for a brisk hour to get to town, and then trotting up six flights of stairs to her tutor’s office, to being a woman who barely has the energy for a ten-minute stroll to the corner shop.

At night I am restless and burning, and by the time Freddie wakes me up I am even more exhausted than when I went to bed.

He can be uncooperative when it comes to the necessary routines of the day; playing or reading is far more interesting than going to the toilet or having a wash.

Often the only way to get him to the bathroom is to carry him there, squirming in protest. When I do, every joint below my shoulders nags me painfully. During the day I am so physically shattered that I could sleep on a washing line.

My brain is so tired that the thought of planning a meal that Freddie can manage, and everyone else is prepared to eat, seems like an insurmountable challenge.

I have lost count of the times I have served up beans on toast recently.

But even warming a can of Heinz and singeing some bread becomes a major task when undertaken alongside the supervision of Freddie – prompting him to think about whether he needs the toilet, then taking him, wiping his nose, preventing him from eating the tissue, or nibbling the corners off books, and retrieving him from various places where he gets ‘stuck’ (purely for dramatic effect).

My formerly pre-menstrual headaches now strike randomly, bringing with them nausea and a mental stiffness so acute that I struggle to recall even commonplace words.

I cannot plan around them anymore, because they no longer conform to their accustomed pattern.

The only painkillers that worked are now forbidden to me because they clash with the medication I take for the horrendous mood swings that almost saw me single again.

Poor Freddie must have been so confused by my inconsistency; it is no wonder his behaviour deteriorated. I think it is time to start taking the advice that all special needs parents give to one another, but ignore themselves: take care of yourself.

So, if you’ll excuse me, I’m off to do some research into the menopause.

I need to find ways to stay as well as possible for as long as possible – so that I can put off tackling that first elephant for a little while yet.

Special Needs Family Life: Moving House

Lucy has profound disabilities both physical and learning, the house is swamped with her equipment, and it has no downstairs loo.

As she is showing promise in the toilet training department, a downstairs loo, as unglamorous as it sounds, is top of our housing priorities.  Bungalows would be the sensible option, but largish ones are sadly lacking in our town & budget so a house it has to be.

Two years ago, the Occupational Therapist from Social Services visited us and bluntly declared that our house was too small to adapt, she suggested instead that we put our names on the Council housing list.  Being home owners for more than 10 years that came as a shock and we resolutely set about proving her wrong.

Applying to charities for a stair lift and bath lift, we muddled through, but our needs as a family have now outgrown those efforts. Looking for a new house is supposed to be fun, but we have to exclude so many as even if they do have the holy grail of downstairs loos (big enough for disabled person and carer) the house also needs so many other elements.

Level access, ideally off road parking near to the house, no steps to the garden, a floor plan that allows for a lift, a ‘flow’ around rooms for a walker to manoeuvre and a bathroom that can keep a bath lift in it and a separate shower.  If that bathroom is near to a bedroom big enough for Lucy’s special high low bed then all the better, as tracking will probably move in with us at some point too. If I thought the house searching part was disheartening it has nothing on the house selling part and dealing with viewers.

Yesterday in the space of three minutes the woman walking around my home asked, “Who uses this?” pointing to the stair lift, “What’s this?” pointing to the high low bed and eventually the inevitable “What’s wrong with your daughter?” none of which were her business but in what felt like a hostage situation I garbled answers.

A home is also more than just bricks and mortar, it is a sanctuary and vault of memories both good and bad.

Our current home has welcomed an army of therapists, social workers, and carers.

It has repeatedly allowed in ambulance staff in the middle of the night to whisk us off to hospital, stood sentry over us and buffered our overspill of emotions when needed.

It also welcomed our tiny baby when she finally came home from the special care baby unit.

It has provided a safe haven to our family and been a port in every storm we weathered.

It has hosted family celebrations, delighted in being dressed up for birthdays and Christmases and evolved with our taste in decorating.

Those memories are hard to leave behind and we will miss this home, for all of those reasons, but it is time to hand it over to someone else to love it and it to nurture them too.

As for us, the search continues for our next sanctuary and place to grow in as a family, I know it is out there somewhere just waiting to be found.

Special Needs Holidays and Travelling: My Top Tips for Holidays and Days Out

1. Stop listening: to people who try to tell you that you can’t go on holiday when you have a child with special needs

What do they know?

Most of them have never had to try.

You know best what is possible for your family.

Take it from me – you can and should have a holiday.

You deserve one.

You just might have to do things a little differently.

There are organizations which specialise in adaptive holidays for families/individuals with disabilities, but they aren’t necessary for everyone, it depends on your child’s specific needs.

2. Throw away the ‘rule book’: and any preconceived notions that you may have

Think about what ‘holiday’ actually means – ‘an extended period of recreation, usually away from home: a break.

In other words, spending time relaxing, doing enjoyable things, and making memories.

Apart from that there are no set elements to what constitutes a ‘holiday’.

Now you’re ready for the next step:

3. Do whatever works for you

My parents once tried to tell us that a three-day city break in London was completely inappropriate for our children; the only suitable holiday for them would be a week at the seaside.

It was Easter – too cold for the English Coast.

Going abroad was out of the question then, as was being away from home for more than a couple days, as our eldest son struggled to cope outside of his familiar surroundings and routine.

So we ignored my parents … and had a fantastic time.

Three-day city breaks became a regular thing for us, always spent in a Premier Inn, because they all look pretty much the same and our son knew what to expect.

4. Play by ‘Australian Rules’

What I mean by this is don’t be too reticent about having to do things a little differently in order to make things work for your family (within reason).

This is where your thick skin will come in handy, as we special needs parents so often have to do things which seem counter intuitive, or just odd, to other people.

This may include, but is not limited to:

– Brazenly taking your own food in an electric coolbox if your child will only eat certain things.

– Rearranging the furniture in hotel rooms if necessary. In family rooms with a truckle bed we used to push the truckle under the dressing table to make a little ‘den’ for our eldest son to sleep in. It made him feel safer.

– Asking for music in restaurants to be turned down. We’ve done this, and when we explained why, one place even pointed out a cool, quiet space we could use as a refuge if need be.

– Taking your own (portable) toilet seat for your child to use.

5. Don’t assume the ‘posher’ places won’t welcome you

Many such places pride themselves on their standards of customer service and will bend over backwards to accommodate their guests’ needs.

In one upmarket hotel not only was Freddie treated like a little prince, but, seeing our special needs buggy, they unhesitatingly offered to change our room immediately if the steps would be a problem for us.

Happy Holidays!

Why I Chose to Put My Son in Special School

A lady, noticing him, struck up a conversation with me, explaining that she had an eight-month-old grandchild with Down’s Syndrome.

She told me how well the little one was doing; how, now that mum was back at work, they went to an ordinary nursery.

She also told me, enthusiastically, about the family’s plans to enrol the child in their local mainstream Primary school.

I told her about the nurseries Freddie had attended, one of which was a dedicated special needs nursery.

She shot me a stormy look.

‘No, no, no!’ she shouted. ‘I don’t agree with that at all. They should be educated with everybody else!’

Before I could reply the nurse came out and called the lady in for her appointment. Clearly that lady was under the misapprehension that Special school is about segregation.

It’s not.

It’s about appropriate education.

Freddie has a Statement of Special Educational Need.

It states that he requires twenty-five hours of additional one-to-one support a week – out of a school week of approximately thirty hours.

That’s a lot.

But it’s not the whole day.

There would still be at least one hour a day when he would be without additional support.

When would that hour be?

When he started school Freddie was still struggling to self-feed, and to chew and swallow some foods.

He needed help and supervision not only to ensure that he ate, but to ensure that he did not choke.

He still has no sense of danger and is an enthusiastic absconder.

He needs supervision at all times, including play times, to keep him safe.

Freddie wasn’t toilet-trained when he began school, because he wasn’t physically ready to be.

He needed someone not only to clean and change him, but to be able to help him learn in a way that he could cope with.

It was explained to me that if he went to mainstream school his support would come from either a teaching assistant with no specialist training, or, worse still, one of the mums, who just needed to earn some extra money.

The District SENCO told me, unofficially, that neither of the Primary schools in our catchment area would be satisfactory in meeting his needs, because neither really fully embraced the idea of inclusion.

Within (brisk) walking distance of where I live, though, is the local Community Special School.

Here, the staff are very experienced at educating, and caring for, children with a wide variety of physical, intellectual, emotional and behavioural issues and needs.

Here, Freddie would follow a curriculum based on the National Curriculum, but differentiated to meet his needs, to ensure that he could access it effectively.

They also focus on helping the children to develop their self-help, social, emotional and play skills.

They support the children in learning to follow rules and routines.

They have a toileting programme.

There are currently eight children in his class and three staff.

Freddie’s learning needs fall outside the mainstream.

That’s why they are referred to as ‘special’.

And that’s why mainstream school is not appropriate for him.

Good News! Tesco Tries the GoTo Shop Disability Trolley

Tesco will trial the GoTo Shop in three stores, Bury St. Edmunds, Kettering and Faversham.

Tesco will assess the GoTo Shop’s suitability in-store and its popularity with families, who will have one day to try the GoTo Shop in each store.

The news is a huge boost for the Firefly’s GoTo Shop Campaign, as it aims to make shopping easier for parents of children with disabilities.

Although many supermarkets have disability trolleys, they are often not supportive or secure enough for children.

So it is fantastic news that Tesco is taking steps to make shopping more accessible and convenient for families.

The GoTo Shop Campaign’s goal is to get at least one in #EverySupermarket in the UK and Ireland.

Claire Smyth, Firefly’s past Community Manager, said:

“We are delighted to hear Tesco is trialling the GoTo Shop.

It’s another step forward towards making shopping accessible for all families.

There’s a long way to go in this campaign and we need all the support we can get, but a breakthrough like this is very encouraging.”

You can support GoTo Shop Campaign when you download the campaign leaflet and hand it in to your local store.

#EverySupermarket

Pramhead – Find the perfect Special Needs Buggy or not!

If I’d been able to learn from that then maybe I wouldn’t have become such a drama queen about them myself!

To say I had a ‘thing’ for a set of baby wheels is really like saying Imelda Marcos liked shoes – you see I was ever so slightly addicted!  I gave up counting around the twenty mark…

For the first few, I reasoned with myself (and my husband!) that our daughter’s needs were not being met by the previous ones.

Lucy was diagnosed with hip dysplasia at 6 weeks old and put into a restrictive harness keeping her knees bent and hips flexed in what’s endearingly called a ‘frog like position’!

The reality is ‘normal’ clothes didn’t fit and nor did her new profile in the lovely pram I’d bought for her.

Then a year on and the hips still not in the correct position, we moved onto major surgery and the addition of a hip-spica cast, which kept the legs splayed out solid from chest to ankle – much more like a spatchcock chicken.

However I was now aware that part of the new pram purchases were also driven by my need to ‘compensate’ myself for having a baby with disabilities.

I went all out and bought the lovely Quinny Buzz I’d drooled over when pregnant but couldn’t justify in price.

And I got it in bubblegum pink, to coordinate with her purple cast, you see not just practical?!

The shape did allow for her unusual position, helped with a cushion, but like many of the brands at that time, the seat was always a bit reclined.

By the time she was two years old and her low tone was more of an issue, the permanent recline became a constant frustration for her.

I embarked a long journey of pushchair discovery and at the peak of my little habit, I was literally spending all evening every evening trawling the internet and researching my fix.

The ‘buzz’ came in the hunt for the perfect set of wheels, with just the right seat positioning, fold mechanism, colour/pattern fabric and matching accessories.

The hit lasted shorter and shorter amounts of time with each purchase until the ‘down’ came with opening the box on delivery.

I was no longer even getting satisfaction from the deal as it became a reminder of what I was denying.

Luckily I had bought popular brands that held their value well and I always managed to sell them quickly (once within 48 hours of my getting it!) and even made money on some of them.

But eventually I reached a point where I had to admit that shop bought, mainstream whatever you want to call them, pushchairs really were not what my beautiful disabled daughter needed.

By the time she was four, she was also starting to outgrow the size and weight limit of ‘normal’ pushchairs and we started to get ‘those looks’ from other parents assuming that a child of her age should be able to walk.

Quite simply coming to terms with her disability, came at around the same time as coming to terms with her need for equipment designed with her special needs in mind.

It was a stepping out of one world and acknowledging ours and embracing it.

I still squirm now and again with the frustration that her special needs umbrella fold stroller doesn’t recline, which she needs for naps.

I also dream of designing the perfect compact special needs pushchair, because lord knows I’ve got enough experience of them now, but I’m relieved I’ve kicked the habit and can now see them for what they are, a mode of transport and piece of essential equipment, not a status symbol.

Special Needs Parenting: The Judgement of Strangers

It has never happened to me.

Then, one day, I experienced a revelation, a small moment of epiphany which threw a rather unexpected light on the matter.

It happened on the road to the check-in desk at Manchester Airport.

Myself, Daddy, Big Sister and Freddie were part of a long and winding queue of people and baggage that moved with glacial slowness across the departure hall.

It was an adventure for Freddie, who had never been to an airport before, but he was surprisingly content to sit in his buggy, munching raisins and watching the world go by (probably because it was stupid o’clock in the morning and he wasn’t quite fully charged yet).

This gave me rare leisure to take full notice of what was going on around me – it was a long time since I’d last been in an airport, so it was a novel experience for me, too.

After a while I realised that a particular woman was gazing very intently at us.

At first I told myself I must be mistaken.

But no, she was definitely staring.

Then I realised something else – that I had absolutely no feelings whatsoever about it.

It was just a fact that I had noted but had no particular interest in, like the fact that she had grey hair and a pink jacket.

I was completely at peace.

Maybe she wasn’t aware that she was staring.

Maybe she was just curious.

Perhaps she imagined that babies with Down’s Syndrome weren’t being born anymore because ‘there’s a test for that, nowadays.’

(My answer to that: the test is not compulsory, and neither is termination in the event of a positive result.)

Did she think I was misguided, trying to take a ‘disabled’ child on holiday?

(Excuse me, but I think I know best what is, and is not, feasible for my family. I live this life day-in-day-out, you do not.)

Was she inwardly hoping that we weren’t on the same flight, expecting that Freddie would be disruptive?

(Do I look like a novice? See that monkey-shaped bag – it’s crammed with toys, gadgets and snacks. He even has his own portable toilet seat. Your loud jewellery is more likely to disturb people than he is.)

Freddie wasn’t acting up, so it didn’t seem likely she was about to give me a piece of her mind.

My response to anyone criticising my parenting skills is this: ‘are you an expert on raising children with Aperger’s/Down’s, because if you are I would be glad to hear any advice you can give me. But if not, might I respectfully suggest you keep your opinions to yourself.’

I have been a special needs parent for a long time now.

It has made me resourceful and resilient, and given me confidence in my abilities as a parent.

It didn’t matter what she threw at me, there isn’t much I can’t handle.

It was a liberating, empowering moment.

If I don’t care what people think, then they don’t have the power to make me feel bad.

They don’t have the power to make me feel that I need to apologise for bringing my children into the world, or taking them out into it; or for sometimes needing to do things differently to everyone else.

My children have a place in this world that they are entitled to, without apology.

Maybe we have been the subject of stares and comments, but I just haven’t noticed, because I just don’t care what other people’s opinion is of our situation.

Perhaps I should care more, after all, ignorant prejudice will hold our children back far more than any disability or condition.

But for now, not caring is the right thing for me, because it means that I have no inhibitions about living life the way we need to live it, about introducing Freddie to the world, and the world to Freddie.

I hope that in our small way we can demonstrate that, in many ways, we are all more alike than different.

Special Needs Schooling: Tips for Transitioning Before and After School

That has never been more evident than when he leaves and returns from school. Below are some methods that we have found to have been successful.

1. Try to encourage independence. For the longest time, I could not understand what was upsetting Garrett in the mornings.

He was fine getting his things, leaving the house and holding my hand as we walked down the driveway. But as soon as I spoke to his bus driver, he would scream, slap his head and turn on the “meltdown mode.” In those days, he was non-verbal and unable to express what was upsetting him.

I called his bus driver and hatched a plan to have him walk to the bus alone.

When I said goodbye at the door, he was ecstatic. I was amazed at how well he was able to walk down the driveway and navigate the bus steps without my assistance. Best of all, he didn’t have to “share” the driver’s attention with me and the behaviors improved.

2. Have an action “TO DO” at the time of the transition. Garrett found this solution while waiting on the porch for the bus.

He would pick a bloom off a flower or even leaves off a bush…and hold it tight until the bus arrived.

He was so pleased to be able to give the driver a “gift” each morning, but I think that there was more to it. He needed something “to do.

A job that could be repeated every day and establish a routine to the process.

3. Duplicate what happens in other situations. When winter arrived, there were no more “gifts” to pick for the driver. Garrett returned to his “meltdown mode”, but this time the screaming and slapping started at our front door.

Since there was no chance of my black thumb growing flowers indoors, I had to find a quick solution.

I just happened to have a roll of raffle tickets left over from a fundraiser.

I told Garrett that it was a bus ticket, like the one Calliou used in a recent episode. This trick has worked so well that Garrett still uses it, ten years later.

Seriously, one roll of raffle tickets goes on forever!

4. Have a positive reinforcement waiting after school. I hate the word “reward” because it implies that Garrett had to earn it. After school, no matter how extreme his behavior was getting off the bus, Garrett received the reinforcement.

Just like the examples above, I was trying to create a routine: get off the bus, walk down the driveway, enter the front door and obtain the reward. Unlike the bus ticket, I have not found a consistent object that has lasted for longer than one or two school years.

Here are a few examples:

Prize Box: I took a small box (the ones the new checks are mailed in) and wrote “Garrett’s Box” on the outside. Inside, I would place cheap trinkets (band aids, tattoos, yo-yos, etc.) and wave it above my head while Garrett was getting off the bus.

He was so excited to see what was in the box.

Rarely did he even want what was in the box. In fact, I kept re-using the same 20 prizes over and over.

Stickers: Eventually, the box lost its appeal. Garrett’s very kind bus driver offered to give him a sticker when he got off the bus.

She would put it on his shirt and he ran to the front door to show me.

Stickers in an Envelope: After a few months, Garrett would start to have a meltdown each day at “sticker time.” He would get overwhelmed at the choices and change his mind…back and forth…until he worked himself up into state where I would have to carry him off the bus.

And again, with help from the driver and bus aide, they started cutting the stickers apart and putting them in a plain (SEALED!) envelope. Garrett was not allowed to open the envelope until he was inside our house.

Hot Chocolate: When the novelty of the stickers started to fade, I reached out to other SMS parents. One of my girlfriends told me that she was buying boxes of individual packets of hot chocolate and sneaking them to the bus driver.

Each day, her SMS child would get a packet from the driver and walk straight to the kitchen to make his drink.

Chocolate Milk: My son does not like hot drinks, but he is obsessed with chocolate milk. I bought small snack bags and filled them with 2 tablespoons of chocolate milk mix.

The driver gives Garrett his baggie and he goes inside to make his drink. Keeping it down to once a day makes the treat more “special” and a reason to go into the house.

Trying to stay one step ahead of Garrett continues to be a challenge, so I am always looking for new ideas. What methods have helped your child work through transitions?

Please share your ideas in the comment section.

Charlotte’s Web: Medical Marijuana

I believe that if people truly understand the potential that medical marijuana has to overwhelmingly improve the quality of life for so many, including little children suffering with catastrophic epilepsy and other painful and debilitating illnesses, they just might change their minds about legalizing marijuana for medicinal purposes.

There is a plethora of anecdotal evidence suggesting that marijuana in all its many forms is stopping the seizures of many individuals. It has also been reported to ease anxiety and aggression in some autistic people. Medical marijuana has even been accused of shrinking tumors!!

It is my strong opinion that these very real experiences of very real people being helped by marijuana should not be ignored or overlooked!

It is also my strong opinion that very sick children and adults should be allowed the opportunity to see if medical marijuana will help them!

Most of the people I spoke to about medical marijuana object to children using it because they are concerned it will make them high and damage their developing brains. Both understandable objections.

But not all forms of medical marijuana make people high and whether they potentially damage the brain is debatable.

In any event, medical marijuana certainly does not do nearly as much damage to developing brains as most of the common medications being prescribed by doctors today.

While it is my personal belief that all forms of marijuana, including those with high THC content (the stuff that makes you high) can be useful and beneficial in the medical realm, the two types that I want to discuss with you now are Charlotte’s Web and THCa.

Charlotte’s Web and THCa are very special types of medical marijuana that are actually considered hemp.

They were developed by the Stanley brothers, who were experimenting to see if there were any benefits from the plant’s compounds for people who didn’t benefit from psycho-activity of marijuana as well as for the suggested potential anti-tumor properties.

The Stanley brothers began the Charlotte’s Web breeding project after meeting 5 year old Charlotte Figi in 2012, and discovering the dramatic success she experienced in her battle with epilepsy.

Charlotte’s Web and THCa have low enough THC to be considered Hemp. Currently, only certain phenotypes are commonly used for the CBD infused into Charlotte’s Web™ Hemp Products, due to the high success rate of these specific cannabinoid profiles in intractable epilepsy.

Hemp oil also known as Cannabidiol is considered to be safe. There are no known recorded deaths or illnesses associated with hemp in its thousand year history of use. Rarely, users may experience short lasting mild stomach pain or a slight sedative effect. Rarer still, users may experience Dysphoria, an unpleasant emotional state.

So you see, There is nothing psychotropic (which means that they alter the consciousness, mood, and thoughts of those who use them) in Charlotte’s Web or THCa hemp oil that will make anyone high. Most of the THC has been bred right out of them.

There is much, much, much less of a chance of Charlotte’s Web hemp oil destroying a child’s developing brain than there is in the approved medications that most children with seizures are being pumped full of today!!

My daughter, Bethany has been suffering with debilitating seizures and seizure medication side effects for fifteen years. She has ingested every kind of epilepsy medication known to mankind and combinations of thereof and still the seizures plague her. Below is a list of potential side effects common to just about every one of Bethany’s seizure medications, most of which are also psychoactive drugs.

Many of her seizure medications will also eventually destroy her liver.

Drowsiness and sedation, slow thinking and impair motor skills.

Common adverse reactions may include somnolence, sedation, fever, drooling, constipation, cough, urinary tract infection, insomnia, aggression, fatigue, upper respiratory tract infection, irritability, vomiting, problems swallowing, problems with coordination, as well as bronchitis, and pneumonia, mood or behavior changes, anxiety, panic attacks.

Trouble sleeping, impulsive behavior, agitation, hostility, aggression, restlessness, hyperactivity (mentally or physically), depression, suicidal thoughts or thoughts of self harming,confusion, hallucinations, fever, chills, cough with yellow or green mucus.

Feeling short of breath; feeling like you might pass out.

Pain or burning when you urinate; urinating less than usual or not at all; or severe skin reaction — fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

While it has been obvious when Bethany was experiencing some of these side effects, including a couple of life threatening ones, she is not actually able to tell us if she is suffering with any of them because tragically, her cognitive functioning, memory, and ability to communicate is in decline due to fifteen years of taking these dangerous psychotropic medications and her brain being bombarded with uncontrolled seizures.

I truly and honestly believe that medical marijuana is my daughter’s last hope for a happy, healthy, seizure free life and that it is the last hope for many other children too.