It looked like a partying kind of acronym. Not scary at all.

A few years later, the pediatrician escorted my husband and me into the “Disney Room” at his office complex. Naturally, I assumed we were invited to a party. Until he handed us the worst party favor, ever….our son’s genetic test results.

This time, the SMS was short for “Smith-Magenis Syndrome.”

There was no confetti. You were the scariest acronym I ever saw. I would never dance again.

At first, I didn’t want anyone to know about you. You were not going to define us. And it worked so well that you had to rear your ugly head.

You showed yourself in his walk: a strange, wide gait.

You showed yourself in his speech delay: he talked with his hands. You showed yourself in his low muscle tone: he could not color or use scissors.

But most blatantly, you showed yourself in his behaviors. And we could not hide. Not even a little bit. Who could miss the little boy slapping his head and biting his hands?

Even after all of that, you would not let him feel relief. Nope.

You had to take it up a notch. He hit me. He hit his brothers. He hit strangers.

He threw his toys. Or his sippy cup. Or his shoes. He screamed. He slammed his head into any hard surface he could reach: the side of his stroller, the floor, the wall. You were in total control. I had none.

Worse yet, my little boy had no control.

So we had to reach out. To professionals: therapists, doctors and specialists. To educators: administrators, teachers and aides. To other families: special needs groups in our town and the international SMS support group, PRISMS.

Soon, I started rubbing elbows with the famous SMS names, like Dr. Elsea, the discoverer of the gene that causes SMS by mutation or deletion.

And I got to meet the researchers named Smith AND Magenis. In person! And they were kind. And they were caring. And listening to what I had to say.

When Dr. Magenis passed away last year, my husband and I truly felt as if we had lost a member of our family.

That’s just how much we love these researchers. And I will admit, I brag to my friends about how I know these amazing people. Like a groupie hanging onto the bumper of a tour bus, I drop their names: Ann Smith, Ellen Magenis and Sarah Elsea. That’s right. They are women!

I love that the doctors in control of your story are also mothers.

Somehow, that makes me feel stronger. And I am stronger when I talk to the mom who helped establish our support group PRISMS, the SMS moms who serve on the Board of Directors and the women on the Professional Advisory Board.

And I am stronger because of the women who organize the bi-annual PRISMS International Conference and the moms who present sessions; actual SMS lifelines that have guided me through my son’s first 15 years.

And our entire SMS community is stronger thanks to the moms who volunteer as Regional Representatives, contribute to the SMS Journal, “The Spectrum”, or raise SMS awareness in their hometown.

Thanks to you, I have a sisterhood that few others get to experience.

This SMS Sisterhood does define me.

I no longer try to hide you.

The SMS Sisterhood is where I found my control.

Thank you for leading me to them.

I can finally dance again.

Sincerely, Tina McGrevy

For more information about PRISMS, the support network for Smith Magenis Syndrome visit http://www.prisms.org/

It’s not that I wanted to put right any unfulfilled childhood dreams I may have had, you know the ballet lessons, Piano grade 5 or weekend Gymkhanas on the family owned pony.

Just I kind of expected to be able to teach my child to read and to ride a bike, to walk hand in hand to the park and eat ice-creams together.

Is that so wrong?

Part of the shock definitely came from the fact that neither my husband nor I had ever met a family with a disabled child and there are no disabled people in our families.

Apparently that’s unusual, we were told by the health visitor, although obviously not that useful. Did we think this was something that just happened to other people?

Probably.

Was I just the tiniest bit smug at having a ridiculously low risk of Down’s Syndrome for my age (the results came in at 1: 1,750 chance at 37 yrs old) I’m ashamed to say definitely.

But that’s when the only genetic disability we knew about was Down’s Syndrome.

The fact that it had taken us four years to have a baby, after two rounds of IVF (actually, the highly technical version ICSI where needles take over where nature should) plus a miscarriage, didn’t ring any alarm bells for us.

It should have done for the medical staff treating us, but that’s another story.

We didn’t know about other genetic conditions, ones that a baby could inherit, so when karyotyping (genetic testing) wasn’t offered, we didn’t know to ask for it.

Although most conditions are ‘de novo’ i.e spontaneous, not all are and I firmly believe that karyotyping should be offered to all couples going through IVF, sadly it’s not.

Nor did we argue when the ‘experts’ week after week reviewed the scores of ultrasound scans of our very slow growing baby, and said nothing was wrong.

We naively thought they knew best, or at least knew something, which was more than we did at the time. How wrong we were. How wrong they were, but again that is another story.

So nearly 6 years on since we became parents for the first and only time, I’m reaching a point where I’m accepting that things are not going to be the way I had hoped they’d be.

Or at least some of the parts may be, but they may take much longer to reach or need a different approach.

I can teach my lovely daughter to ride her amazing pink sparkly special needs trike, which a wonderful charity funded for us to make possible.

I do spoon feed her ice-cream when the mood takes her, the Mr Whippy type is her favourite, and I pray every night that I will still one day walk hand in hand to the park and everywhere and anywhere with her.

As for the rest, I was thrown out of ballet aged four for bad behaviour when my mood turned as blue as my tutu, and there is no room in the house for a piano (or garden big enough for that pony) anyway!

Perhaps in the end, our dreams are just what we make them and we are lucky to have any at all.

Stacy Warden, mum to Noah, traveled to the UK last year and says she fell in love with it. Here are some of what she said she desired most about what the UK offers for children who have special needs:

Television Programs

Just about all UK children’s programming features children with special needs. My first introduction to this huge difference in children’s television was while we were in our hotel and we turned it on to BBC.

I was so shocked when I seen not one, not two, but five children with different levels of abilities in wheelchairs gardening on a show called Something Special with Mr. Tumble.

It became and instant hit, so much so we bought a multi-regional DVD and imported the box sets. I thought maybe it was just one particular show, however upon further exploration other UK shows were equally inclusive, Balamory, and Mr. Bloom’s Nursery also featured those with special needs.

Here in the US we see the occasional child with special needs, but our programs are not nearly as saturated with children of different abilities like they show in the UK. It does our child the world of good to see other children regularly on television who are just like him.

Equipment Vendors & Equipment

Hands down you ask any US parent and we will tell you all the very best adaptive equipment originates and exists in the UK.

Many of us spend countless hours attempting to find creative ways of getting items shipped from across the pond.

It’s very discouraging when you know something exists but your child doesn’t have access to it. And it’s been my experience that vendors in the UK don’t just view what they do as a job, but as changing lives for the better.

They care, and they genuinely mean it.

Accessible Bathrooms

I almost thought I was on another planet when I landed at Heathrow Airport in the UK and experienced our full-fledged accessible bathroom.

Nothing like you could ever imagine. A changing table for older children and adults, a ceiling/hoist lift, huge space so the entire family could comfortably fit, height adjusted sinks and super clean.

I’ve never come close to experiencing anything like it. And it’s not just Heathrow Airport, Changing Places has hundreds of accessible bathroom locations all across the UK with more expanding each day. I have never even seen one anywhere that could even hold a candle to what the UK is doing anywhere in the USA.

Disabled vehicle and housing assistance

The UK also has a higher rate mobility (a disability state benefit), if you receive this you can apply for a Motability car.

Motability is a UK based charity. This provides for the cost of your car, car tax, insurance and maintenance is paid.

There is an advance payment which for smaller cars can be nil but for WAVs can be up to £20,000. You can apply for grant funding to help with the advance payment. This is a national program.

The UK also provides for disabled housing assistance. Depending on the disability your child (and home) can be assessed for a Disabled Facilities Grant – again a national program but interpreted differently within different counties.

This can mean anything from wet rooms, downstairs toilets to lifts, chair lifts and also full extensions to provide downstairs bedrooms, widened doors, ramped access etc.

Here in the US there is no such program whatsoever to help assist, much let alone cover the entire cost of an accessible vehicle.

And there are no housing assistance programs offered for families with special needs children.

For some select families who qualify some states offer Medicaid Waiver programs that will generally permit for one home modification every five years.

Terminology & Attitudes towards those with special needs

What I loved most about the UK was the attitude towards my child with special needs. Not once was a single person unkind.

We were approached often as if we were any other family to say hello or wave, people spoke directly to our son, never thinking twice if he was non-verbal. The UK has also gravitated away from using words like “handicapped” and now find the word rude.

The proper reference is the use of the word disabled.

It’s a much kinder and gentler approach to viewing those who are differently-abled.

Very refreshing and it left me feeling like my child was unconditionally accepted and loved by all.

Claire Smyth, mother to Daniel likewise has some features about the USA that she feels are desirable when raising a child with special needs:

I lived in Georgia for a year as a student and visited almost 20 states so feel I have some grasp of life in the States.

However, I haven’t been there since Daniel was born so my views in terms of special needs come from my online experiences and connecting with American special needs families over the years – so here goes…

Equipment Vendors & Equipment

I chuckled when I read Stacy’s list because in my experience, a lot of what I have wanted to buy for Daniel comes from American companies.

Few of which ship to the UK or if they do the shipping costs can actually be more expensive than the item wanted.

Therapy, types and availability

I definitely think American families have greater opportunities to access a wider range of therapies and different approaches.

Therapies that would be considered common practice in the States are often thought of as unconventional here in the UK with some therapists not even familiar with the various types.

There is also a lack of private therapy options available here.

So if UK families do have the funds to access private therapy they often have to travel quite far to do them which limits the opportunities to do them on a regular basis.

Genetic Testing & Medical Procedures

I struggled on the right terminology for this one so I am hoping my explanation is a little better.

I feel I need to add a disclaimer at this point, I appreciate everything the National Health Servicce (NHS) provides for my family BUT it can be infuriating sometimes.

Genetic testing is one area where we have a lot of experience. Our experience has been one test at a time with weeks if not months of waiting for results before moving on to the next test.

I fully understand the principle of reduce costs by minimising the testing to the most likely/common cause before moving on to the rarer causes of the disability or symptoms. But the experience of this first hand, has been an emotional roller-coaster pushing us to breaking point over a prolonged period of time.

I understand that similar tests would have been done all at once as standard practice in the States meaning families would get much earlier diagnosis even for rarer conditions, saving a lot of heartache.

I think it would be fair to say that similar to therapies, the US would be much further advanced than the UK for genetic testing.

So for example the microarray genetic test, which can simultaneously check multiple gene sequences has only recently become a regular part of the genetic testing programme and in fact is still patchy across the country but has been more widely used in the States for a long time.

Although we haven’t had the need for medical intervention with Daniel, my heart breaks for families who have had to raise significant funds to travel to the US especially for specific epilepsy treatments and Selective Dorsal Rhizotomy.

Holidays

So the UK is not known for it’s great weather especially here in Northern Ireland.

For British and Irish special needs families holidaying in warmer climates usually involves air travel to a foreign country – any one travelling with a disabled child knows the difficulties this can bring – and that’s before you even get there.

Once you’re there you then have the worry of needing medical assistance in a foreign language and within unfamiliar medical setting.

Living in Georgia, we regularly packed up the car going on road trips and experiencing so many new things – we skied, surfed, mountain climbed within neighbouring states. I completely understand why so few Americans hold passports – there’s a life time of experiences to be enjoyed in their vast country.

The First Ladies

Michelle Obama is using her position as the American First Lady to forge ahead with her own agenda to improve the world.

Her initiatives include better support for miltary families, education for girls, helping working women balance career and family, encouraging national service, promoting the arts and arts education and tackling obesity.

Samantha Cameron is the wife of the British Prime Minister, David Cameron.

But, more importantly she is mum to Ivan who had Cerebral Palsy and died aged 6 in 2009.

I wish Samantha Cameron was using her experience as a special needs mum and her position as the UK’s ‘First Lady’ to make the United Kingdom and the rest of the world a fair and just place for disabled children and their families.

Instead, special needs families in the UK are facing their most uncertain period ever, feel vulnerable and scared about the future plans of her husband’s Government.

The Firefly Garden would like to wish all our US Firefly Friends a fantastic Independence Day! Do tell us what you get up to to celebrate!