The Best Gifts You Can Give.

We have four kids, and over the years, they have gotten countless gifts on Christmas, birthdays, and sometimes randomly from friends and family.

I’ve gotten a lot of questions about gifts since my two special needs kids are hard to buy for. Unless you know them, a lot of things aren’t always appropriate for them, no matter what the age range on the box states.

Drawing from past experience, I have come up with a few suggestions and ideas if ever you are looking to buy a gift for a child with special needs or their family.

Don’t be afraid to ask the parents for suggestions first. I promise this will save you a ton of aggravation and money, and save the parents a lot of frustration as well.

Ask what they like and what they don’t. In the case of many children with developmental delays such as mine, their interests are not always on par with children their own age.

My daughter is 12 and still likes Elmo from Sesame Street.

Consider their abilities.

One year my daughter received a latch hook rug kit. Perfectly suitable for your typical ten-year-old, but not for a kiddo with dexterity issues in her fingers.

She became extremely agitated when she couldn’t handle the hook to make the rug. Sensory issues are also a huge issue when it comes to gifts of clothing.

Many children can’t handle the tags on the neck or certain fabrics.

When in doubt, gift certificates to favorite shops are a great option.

If the child is old enough, they can pick something special on their own. If they’re too young to choose, their parents will know just what to get them!

If you are trying to decide on a gift that the whole family could use, I can tell you from experience that parents with special needs kids are exhausted from the day to day care of their children, so not having to think about what to fix for dinner would be a blessing.

A gift certificate for take-out or food delivery or a homecooked meal will no doubt be much appreciated!

The gift of time or experience is also amazing.

Offer to come and spend some time with the child(ren), so Mom and Dad can have a little respite. Depending on the child’s abilities, tickets to a local event or museum is a different and unique gift that the whole family may enjoy.

The most important thing to remember when buying for a child with special needs is that the more you know about who you are buying for, the better off everyone will be!

If you’re not sure about what to give, take some time to get to know more about the child or family you are buying for.

Sometimes just taking an interest and showing that you care about their child’s needs is gift enough for any special needs parent!

The Christmas Party

There isn’t an email going around the office. There isn’t talk about who’s wearing what while dodging the boss.

There isn’t last years gossip floating above the crowded canteen making everyone anticipate this years gossip.

I miss it.

I miss the work Christmas party.

I miss the build up to it, the let down of it and the remorse of it all!

I even miss the hangover and the irrational fear that overcomes you when get in the next day.

There’s a social isolation that comes with being a full time carer, one that I’ve gotten used to over the years but Christmas seems to bring it to the forefront.

The isolation is more obvious. There is no Christmas parties for those of us who are carers. It would be a lonely old party if there were, I suppose.

What do people who work 24 hours a day, 365 days a year do at Christmas?

Well, most do the same thing they do all year round.

Others are lucky and get a break, get a bit of respite and get to go to their partners Christmas party or plan a night out, if they have the energy.

I am in the lucky bracket. I get respite in the build up to Christmas. I don’t get respite over the Christmas holidays but I do get to go out and enjoy some Christmas festivities. I get a break from my caring role.

I don’t have a workplace anymore nor do I have that many friends, to be honest.

I gatecrashed my husbands Christmas party, gatecrashed is not really the right word,I was invited but it’s not the same when you don’t work there (hence the feeling of being a gatecrasher) I did enjoy it and found my husbands workmates to be the friendliest bunch of people I’ve met in a long time.

Gathering friends to have a drink over the Christmas is a tricky thing,as they are all busy with their own Christmas duties and parties to attend.

I have limited free time, even with respite there’s never enough time. Sounds familiar to everyone,eh?

I often sit and think of the carers who aren’t as lucky as I am.

I think of the million reasons I don’t want to go out for a catch up or a coffee especially over Christmas.

Then I think of those carers.

The ones who don’t get asked anymore, the ones who simply can’t, the ones who don’t get respite and the ones who feel that Christmas is a spectators season.

I feel guilty sometimes that I have respite. I see so many carers without any and my heart breaks for them. It took us five years to get respite so I do know how hard it is to get; I also know how those of us who get respite feel ‘lucky’ to have it.

Fundamentally; every single carer on this island should have access to respite.

Everyone needs time off, a break, a rest…

For those of you who had or have a friend who is a carer, that friend you haven’t seen in months, even years…or a family member who can never attend a family gathering, I implore you to reach out this Christmas.

I know it takes two to communicate.

I know that they’ve shown no (apparent) interest and I know the millions of reasons why you can’t or why you’d find it hard but take it from this carer, who is very lucky to still have friends and family members that call, it matters.

That carer misses you.

They’d like to see you.

They wish they could see you but as hectic as your own life is (everyone’s is) they really, really don’t have the time to arrange and ultimately rearrange meetups.

They can’t nip in the car and spin out to you, not without organising and planning …it’s a different world, it’s a much more difficult world to live in.

It’s a world which most of you will never have to be part of yet, anyone can join.

No one is excluded, no one gets a ‘pass’- anyone can become a carer, even you.

No one is asked if they’d like to be a carer, people become carers due to love, nothing else. They are motivated by love, strengthened by love, paid with love and do it all over again and again because of love.

That carer who doesn’t get a break, who doesn’t show up to anything -they can’t, they simply can’t.

I know that’s hard to understand, especially when you’ve been inviting them and including them.

I think of these carers over the year but I admit, at Christmas I think of them more often.

Carers who are lucky to get the respite,(however little or however much,it’s all relative) still get lonely over Christmas, they still feel left out. I still feel lonely and left out- imagine how those with no respite feel?

So,my little wish this Christmas is for those of you who have a carer in your circle or family to call out, send a quick message or make a quick phone call and tell them you are coming to see them.

Trust me, they are just as nervous of you calling as you are of making that reconnection, but neither of you will regret it.

And to my not so many friends, thank you for including me for all these years, thank you for calling out to me and thank you for planning events around respite, I am very lucky x


It’s the sparkling lights,

Soft glows reflected in their faces.

It’s the busyness,hustle n’ bustle,

Meeting friends and some old faces.

It’s the smell of wood burning,

Memories of Christmas’ long ago.

It’s the presents wrapped,

With care; surprises all in a bow.

It’s the laughter at the table,

Brussels sprouts, crackers pulled,toys laying on the floor.

It’s the jokes we’ve all heard before,

Yet we listen in for more.

It’s the ‘smile for the camera’ time,

Cheers to family we hold so dear.

It is the most wonderful time of the year,

It’s the time which brings tears,worries & fears.

It’s the sneaky memories of yesteryear,

Causing us to pause,shed a silent tear.

It’s the memories that keep them alive,

Even if our hearts find it hard.

It’s the stuffed turkey,ice cold beers,

The funny gifts for all to share.

It’s the looking to the future.

Learning to let go of the past.

It’s the slowing down of time,

Sipping wine watching kids play.

It’s all the presence of those we love,

Giving presents & igniting imaginations.

It’s about music we love,

Which only plays once a year.

It’s about the hug, the kiss,

Yep, even that awkward near miss!

It’s about reflection..thankfulness,

Never ending to do lists!

It’s about that feeling,magical and awe,

Sitting with family reeling in the years.

It is the most wonderful time of year,

Which hardly goes by without a tear.

So take the pictures, sit in the chair,

Make the memories you’ll one day hold so dear.

Happy Christmas; pause and be present for those we hold so dear.

A Roll Tide Kind of Saturday

For those who will read this post and do not personally know our family, we are from Tuscaloosa, Alabama (USA).

That’s right…. title town itself.

I am a University of Alabama grad and returned to my alma mater a little over a year ago as an employee.  As my husband and I dated through college, we loved the atmosphere of this town.

It is simply electric during football season on a home game Saturday. You can feel it in the air days before kickoff.

Even before my husband and I walked down the aisle, we knew Tuscaloosa would remain our home.

We wanted to raise our children in the college town we had grown to love.

We knew we wanted our kids to experience the atmosphere of a brisk autumn day in Bryant Denny Stadium with pom poms shaking in unison and everyone united with one common goal … winning.

We wanted our kids to know Big Al personally, to run freely on the quad after watching the elephant stomp, and to experience tailgating with family and friends.

We had visions of enjoying family events like the homecoming parade, trick or treating at the sorority houses, attending gymnastics meets on a Friday night or spending a Sunday afternoon at The Joe.

However, our introduction to parenting was nothing like we had imagined and this college town, at first, was just one reminder after another of that fact.

Being parents to a daughter with special needs made our life seem so different than everyone around us.

We did not know how to navigate outside our own home. At first it hurt too much seeing children our daughter’s age doing things she should be doing but couldn’t. But as time passed we learned to cope with those feelings, and we slowly began to venture out a little more.

We started tailgating every now and then with family and friends. And we even tried attending a football game for the first time in 2017, but it was not the best experience.

Our daughter’s limited visual input made it hard for her to understand why people started cheering spontaneously and why the band would start up out of nowhere.

We just didn’t know if it was something she could understand and enjoy.

By the time the 2018 football season rolled around, our daughter had grown so much that she was in a wheelchair.

So, when the opportunity to buy season tickets arose, we initially thought there would be no way. We were concerned about wheelchair access.

We were concerned about having to take in medical things like mic-keys, medicine, and formula. We were concerned about people and whether they would be accepting. We were concerned about the crowd noise.

But the stubbornness in me decided that we shouldn’t just write it off as an impossibility yet, and I started to do a little research.

I learned we could get wheelchair accessible seating and we would have a reasonably close parking space.

After a few calls, I found out that we’d be able to take in all our daughter’s medical supplies and there would be first responders at all games in case of emergency.

Thanks to the wonderful company my sister works for, we would have a place to tailgate with people that already knew our daughter and would welcome us with open arms.

Last, I found some ear muffs that could help cancel out some of the spontaneous noise.

It was starting to look doable. So, why not try?

That’s the conclusion we finally reached. Our daughter, despite her limitations, is a people person. She loves to socialize more than anything else.

What better way to encourage that than with 100,000 of your closest friends and family? We figured, worst case scenario, we would try it for a season.

If she hated it then we wouldn’t do it again.

This past fall, we attended four home football games. And she LOVED it!

Our experience could not have been better.

We found that most of our Alabama family are extremely nice and welcoming to our situation. Our seats were great, and we had no problems with accessibility.

We were a little surprised to find out that the University really had things figured out and everything worked well. The stadium event people and first responders were amazing.

We even started looking forward to seeing Ms. Nancy, the event concierge assigned to our section, each Saturday.

We also found that by the end of the season, our daughter no longer needed her ear muffs. She had grown accustom to the spontaneous noise of the stadium and even seemed to enjoy it.

This past football season was an amazing experience for our family.

It reiterated the reason why we love our college town and why we chose to grow our family here. Sure, our original vision never had a special needs child in it. But that is only because we did not know what a blessing that would be.

And if I am being honest, time has shown me in more ways than one that our future never really goes according to plan anyway.

What’s that saying? “Life is what happens when you are busy making plans.”

It couldn’t be more true. While I’m still a major planner, life has shown me that to survive and be happy in this world, you and your plans have to be adaptable.

Sometimes you have to find a different way to accomplish the same goal. We are so thankful that over the years the University has adapted to the growing needs for handicap accessibility and does it so well.

We are also thankful for the family atmosphere the University brings to this town. We will forever be supporters of crimson and white.

Let’s bring home another championship to title town!

Roll tide!

The Expense of Having a Disability

There is one topic I could talk about for hours and that is the expense of having a disability.

Sounds a bit strange but anyone who has a disability or a child with disabilities will know exactly what I mean.

My son needs a lot of equipment, he can’t yet sit up or move around in any way on his own so as you can imagine, our house is full of different pieces of equipment to help him be able to play, eat and do anything he would like to really!

Luckily, we have the amazing NHS to provide us with some of these but there’s a lot they can’t.

He needs a therapy bench so I can do his physio at home, we really couldn’t do without it. A bench.

Seems pretty simple right?

I asked his occupational therapist about getting one and she said this is something I would have to purchase myself as unfortunately it’s not seen as “essential” so after a quick google I was shocked, HUNFREDS of pounds, for a little bench!

Now, I fully understand that with a lot of equipment for people with disabilities it has to be thoroughly tested and a lot of research is done into making these but some things I just can’t believe.

One example is a rain cover.

If I wanted to purchase a rain cover for the specialist pram that my son it is it was costing nearly £100, that was just for the cover too and didn’t even include the hood!

It just hurts me when there’s so much equipment out there to help but so many families who are having to try do without because they simply can’t afford it.

I just wish I knew why it was so expensive to have disabilities…

It sometimes feels like when searching online for a product and you type the word “special needs” it instantly doubles, triples in price.

I have come across a few amazing charities that help people access equipment they require but can’t afford and they do the most amazing work but there’s still a huge part of me that just wishes it was as simple to go out and buy something for my son when he really needed it.

There are so many different things that we don’t have that I know would help him and if breaks my heart that I can’t just go get it tomorrow for him!

Does anyone else feel this way?

Money is something we don’t often talk about, people often feel embarrassed to admit they can’t afford something but I felt like this was important to share.

There’s ALOT of parents out there that simply can’t go back to work due to their child’s disabilities and yes, there is carers allowance but that’s nowhere near enough to be able to not only live on but also purchase items for the child to help them with their therapies and just in general, and as a parent, that truly hurts.

…and a Happy New Year?

Christmas has come and gone, with all of its celebration, joys, and maybe some trials and tribulations thrown in for good measure…

Racing up next we say goodbye to the old year and cheer in the new; but how that makes you feel might well depend on the kind of year you’ve had, and any expectations you may have for the year ahead…

In the world of additional needs parenting, unpredictability comes as standard…

As Tom Hanks’ character reminds us in the film ‘Forrest Gump, “My mama always said life was like a box of chocolates.  You never know what you’re gonna get.”

Well, what did you get in 2018?

You may have had a year filled with blessings, with delightful and positive steps forward as you have cared for your child or young person.

Maybe they have coped really well with difficult situations, adapted well to change, or made a breakthrough in a previously difficult area for them.

Perhaps you look back on the year with relief, with tears of joy, with deep thanks for all that it has brought.

Or maybe you’ve had a hard year; a year of setbacks.

A year where it seems to have been a constant battle; one step forward, two steps back.  Maybe you’ve seen regression, challenge and struggle.

Perhaps you look back on the year just thankful to see the back of it; your tears are tears of grief as you think of all that has changed for the worse.

In reality, like me, you will probably look back on the year that is ending with a mixture of both of these feelings… recognising the good things that the year has brought, while touched with sadness for the things that have changed for the worse.

In our case, we’ve seen a year where James has developed his personality.

We’ve seen joyful times together, seen successes, and enjoyed seeing James growing up (he celebrated his 16th birthday in June).

This joy was tinged with sadness as James spent much of the year struggling to leave the house, including for school, although the last few months of the year have brought significant breakthrough with this.

With all of the emotions that looking back on the year stirs, it is easy to look at things only through our own eyes, in our own strength, from our own perspective…

And if we do that, we can be crushed by the hard things that have happened, overwhelmed by the challenges we have faced, allowing the good and wonderful things that have happened to be blotted out, erased by the pain of the difficulties we and our children experienced.

But let’s listen to what others might be saying to us, even through the pain, and be encouraged by the affirming words that they share…

Often it is others that see the positives that we can miss.

It is through the storms of life that we can see friends and family working in our lives the most, if we have a faith we may lean on that too, and it is through the challenges that life brings that we are molded into the person we need to be for our child. 

Are we willing to be molded?

Or do we resist, wallowing in our self-pity and being defined by the difficulties we and our children face, rather than thinking about how they might shape us positively to serve and help our child and others?

So, with these thoughts in mind, what will we take with us into the new year ahead?

Will we drag the chains of the struggles and trials of the old year with us into the new?  Will we allow the failures, regressions and setbacks of the last year define us and our child?

Or will we use these experiences to shape us positively for the year ahead…  to bear our scars as symbols of where we have been, what we have endured together, the experience we have acquired together, to take into the future to help us, our child, and others, to navigate through another year…

As the new year resolution slogan goes… ‘Be more awesome than last year…’

You were awesome last year, you are awesome now, you will be awesome in the year ahead…  and you don’t have to create all of this amazing awesomeness on your own… you journey with others on the same road as you too!

Of course, there will be tough times in the year ahead, there will be times of rejoicing too.

But whether we are crying tears of grief or joy, if we share it with each other, if we trust in each other, there are people who will be there with us, fighting for us, in our corner, that have got our back…

And that, for me, means that whether next year is a Happy New Year or not, I know that me and my family will make it…

How about you?

Gratitudes for 2018

I have THE best family and THE best friends. Ever. FACT!  2018 has been a truly amazing year, we manged to get in so many memories and firsts.

I’m grateful that this year we had our first abroad sun holiday.

We do go on holiday every year but we mainly travel around the UK or go to visit family in Northern Ireland. So, we had a two-week holiday to Corfu with some of our best friends.

Cameron was worried about the longer flight than he was used to and I was worried about the change in diet and the mosquito bites that he would have to deal with.

We hired a boat and went out on the open sea, he went to his first water park but he absolutely blew us away with his maturity and the way he literally took each new experience in his stride.

He said when we came home that “he had the best time ever!” and loves it when we are off work and all together.

I’m grateful that our jobs allow us the lifestyle we have and the ability to have been able to book a similar trip abroad again for next year.

I’m grateful for the first grown-ups weekend away to Prague that me and my husband were able to take with friends.

The first time in 10 years I have left Cameron with family for three nights.  He was in the best hands, spoilt rotten and although he wasn’t too impressed, he coped absolutely fine in his routine change.

I’m grateful to my parents for all that they do for all their grandchildren.

In the summer holidays Cameron then went away with his grandparents, aunts, uncles and cousins on a camping holiday down to Cornwall.

He went swimming, built new relationships, played out until it started to go dark and spent everyone’s money in the arcades winning his dad a fluffy dice for his car!

I’m grateful to my own grandmother who at her 67 years of age still looks after the whole family, by cooking or just giving her blessings and emotional support.

She looks after Cameron three afternoons a week until we finish work and ALWAYS has his tea ready for him when he gets in from school.

I’m grateful that my sister treats my son as her own.

Every day she takes him to school and picks him up three of these days when he is not at afterschool club.

She will always call me to see if he wants to join in any activity that they have ongoing whether it be park, cinema or MacDonald’s.

I’m grateful for the true friendships that we have.  This year we all went camping for the first time, our friends had spare equipment and we were told to “try it” and see what we though.

The hilarity that followed made it truly one of the funniest experiences ever.

Cameron again excelled in his coping and maturity, he didn’t thoroughly enjoy the new experience but said he was willing to try it again.

I am grateful that my siblings have been blessed with extending their families, my brother is about to become a father for the first time to a little girl and my sister is expecting TWINS.

The above were all the highlight stand out moments from this year but there are so many more, and we still have another whole month left.

I am grateful to Firefly in giving me this platform to be able to share our ASD journey with the world, in hope that our experiences help or give hope to at least one other person.

I am grateful for the love of my husband who is my best friend and life partner, father to our beautiful son and whom without I don’t know how grounded I would remain.

Here’s to 2019!!


As the year comes closer and closer to an end, I can’t help but look back and reflect.

I know how corny that sounds, but for everything my family and I have gone through this year, it is a given.

I have yet to blog about it, but I actually finally broke the four year streak of being a stay at home mom and started working outside the home.

Before working, I never knew how it would be possible.

With Oliver’s therapy appointments, doctors appointments, and just all the other miscellaneous activities I did with him and the other kiddos, the idea of adding an 8 hour block to my schedule each day was impossible.

Or so it seemed.

But here I am, almost 2 months in and I can say it IS possible!

Of course deep down I always knew it would be, as I am not the first mom of a special needs child to go to work. Lol!

It was just the right time for me to be able to do it.

So I made the leap.

To add the cherry on top, I get to work in the field I am going to school for and have been blessed with an amazing crew and supervisor to work with.

People who understand that we are more than a body set out to do their duties for their shift and nothing more.

That we are real humans, with lives and unique ones that require a little more or a little less than others.

But don’t get me wrong, it sure did not start off easy.

Within my first weeks of working, I had Oliver come home multiple times with the stomach bug and RSV, the youngest Theodore come home with strep, and my oldest Aaden come home from injury as well as his round in the stomach flu.

Without my husband and a few other lovely ladies that have helped me tremendously, I don’t know how I would’ve got through it all.

So as I reflect on all that has ended, begun and happened this year, I am oh so grateful for it all!

Life has a funny way of teaching you lessons, when to slow down, when changes need to be made, and even when new paths need to be taken.

Most of us just forget to take the time and reflect on it all.

Not just take a bad day for being a bad day, but how we could learn from it.

How we can appreciate so much more, the good things in our lives.

SO if you are reading this, I am grateful for you.

Please Don’t Park There

Dear Fellow Driver,

Those few parking spaces at the front of businesses and buildings you see, with the blue marked lines and handicaps signs, are more than just a “quick” stop.

You may be in a hurry and thought to yourself, “it’ll just be real quick and then I’m gone”.

There may not have been a handicap sign and you failed to see the symbol on the street.

You may have even parked a little wide and are parked over the marked lines for the handicap spots.

It usually doesn’t matter the reason, and I am sure I have heard them all.

But if you do not have the appropriate license plate or placards for using such a space, please do NOT park in the designated areas.

My son is young, and actually does not realize there are special spots like these made for him, but I do.

I am the parents that has to cross her fingers hoping that a spot is available for us when we need it.

I am the parent that has to see these parking spots abused by people who feel more entitled than those with the legal right to them.

Getting my son in and out of the car and in to his wheelchair is no easy task.

It will only get harder and he gets older and heavier to carry.

The lines are marked to allow people like myself and others, the appropriate amount of space needed for ramps and such to extend allowing us or the person to be able to get in to their own car with an accessible device.

Of course, I am only speaking on my behalf and those that I know with wheelchairs as accessible modes of transportation.

There are so many other reasons people need these parking spaces.

So please understand that my son’s needs are so much more important that what is convenient for the moment.

Please understand that if I approach you, it is only with intent to better educate you on the purpose of a handicap spot and why it is so important for families like my own.

I do this, with hope, so that my son will not have to deal with this on a daily basis as he gets older and more independent.

With hope, that he can see people who respect the true purpose of these parking spaces and uses them accordingly.

So next time you are in a hurry, please remember that my son’s needs are not to be used for your convenience.