I Will Not Drive a Van

It is always the odd things I seem to have trouble really accepting.

It is rarely the overly obvious things that most people see and feel sorry for us for.

Nope, it is always something crazy, something you don’t expect, something completely random.

And it usually comes out of nowhere.

It’s been well over a year ago, maybe even closer to two, when my sister and I were out shopping one day.

We were in the kids clothing section, and I walked a little too far into the older girls clothing.

I was trying to make my way back to the infant section when I happened to notice a stand with little girl’s underwear.

For some unknown reason, I stopped in my tracks and just stood there staring at them.

My sister finally found me and asked what was wrong.

I tried to shake it off like it was nothing.

But being the persistent person that my sister is, there was no changing the subject, and I finally confessed that I didn’t think I’d ever be able to buy our daughter underwear.

She assured me that it was too soon to know that.

I agreed with her, but for the rest of the day all I could think about was the real odds of ever being able to potty train our daughter.

It was quite unlikely I’d ever be buying her underwear.

This really shouldn’t have been that big of a revelation.

At the time this happened, I had already come to accept a lot things: our daughter would never leave the nest; we would never celebrate her wedding day; if we didn’t have other kids, we would not be grandparents; walking would be very hard for her but maybe not impossible; speech would come a little over time, but most likely it would be limited and aided by a device; and a wheelchair would be a necessary part of life.

Potty training was just another to add to the list.

So, naturally I wasn’t expecting to be thrown that day in a retail store walking past underwear in the children’s section.

This same kind of thing happened to me again recently. I’d been driving around a Jeep Grand Cherokee for several years.

For just me, it was all I ever needed in a vehicle.

It sat up high enough so that if I ever “accidently” ran over a curb I would not tear anything up.

I loved the way it drove (even after a few encounters with the curb). The seats were comfortable and I had the radio presets like I liked.

I knew it inside and out and I was completely content.

For longer than I should have, I fought the need for a different car that could actually fit our special needs lifestyle.

So what if we were breaking our backs trying to get our 30 pound daughter in and out of her car seat.

So what if we had to take the wheelchair completely apart to get it in the car.

So what if we had to put everything in just right if we wanted to also get her gait trainer in there.

So what if we were crammed into the car like sardines every time we took a trip.

It was MY car. The reasonable side of me knew we needed a van. I knew a van made more sense than anything and it would make my life easier.

But it felt like I was giving up the last part of me that felt normal. I knew that once we bought a van, that is what I’d drive for the rest of my life.

And I wasn’t ready to accept that.

Even if it was my reality.

But you know the interesting thing about normals? They can change and adapt.

And if you give it long enough, almost anything can become a normal. Like having a child with special needs for instance.

After you’ve done it long enough, you don’t really know what life is like without it.

So, I finally broke down and we bought a van.

And you know what I’ve figured out?

This van suits me better than any other vehicle I’ve ever owned.

It’s really my spirit vehicle because I’m an extremely practical person.

On top of the van being ridiculously functional enough to handle all of our special needs requirements, it’s also just functional at everyday life.

I’ve always been notorious for buying something big and not having a way to get it home.

This has happened on more than one occasion and has caused a few small fights throughout my marriage.

But the same weekend we bought the van, I was able to haul home a piece of furniture (that would not have fit in my jeep) with ease.

And just the other day, I made a trip to the home improvement store to get 8 foot boards.

They were no match for the van.

I didn’t even have to hang them out the back window, and they weren’t up in the front seat with me as I drove home.

Sometimes I think when we are hit with something out of the blue, it helps to try to change perspective a little.

That’s what I’m working on with my van.

Sure, it’s not my Jeep, but in a lot of ways (and not just for special needs) it is better.

This Mama is now a van owner (even though when I was much younger I swore I’d never be), and it is really not so bad.

Life is all about accepting the things we really can’t change and embracing the things we’ve been given.

I’m sure six months from now, my van will be my new normal.

And I think I’m going to be okay with that.

Looking Back at 2018

It’s that time of year where we look back and reflect on all that’s gone on over the last 365 days.

Often as special needs parents we don’t take the time to look back.

Our lives are so busy, so hectic, we’re always focused on the future and what lies in store for us and our family.

But I think it’s important to take stock every now and again, to look at what’s gone well, and maybe even reflect on what’s not gone so well too.

Doing so can help you plan the future more clearly, figure out what it is you really want to focus on and help your children achieve.

This year, like the last few, has been a bit of a rollercoaster for me and my boys, but luckily with more highs than lows.

They’re both autistic, non-verbal, attend a special needs school, and really struggle to be around each other.

Life can be pretty unpredictable, all going smooth one moment, and full of meltdowns and challenging behaviours the next.

Here’s some of the key moments I’ll always remember from 2018

Tommy learnt how to use the toilet.

This was the biggest milestone of the year for us. After many failed attempts over the last few years, around his 7th birthday he just nailed it over the space of two weeks and never looked back.

It’s a life skill that many take for granted, and definitely makes life a lot easier.

We have a new weekend routine

We’ve found a special needs swimming club on a Saturday afternoon, and a SEN friendly trampolining session on a Sunday morning.

Having two activities to do on a weekend where you can have fun and be around others who understand our lives has been a blessing

Jude is happy around and interacting with his classmates

Over the last year Jude is becoming more and more comfortable around his peers.

The boy who used to be so anxious around other children has started to interact, turn take, join in activities with his classmates.

When we go swimming or trampolining he smiles at the others, and rather than trying to avoid them he watches them, interested in what they’re up to.

Maybe one day he will actually have friendships

Jude and Tommy have spent some time together

For the last 3 years, most of the time my boys have lived apart. I look after one, their mum looks after the other, and we swap every couple of days.

They both need 1-1 care, but more importantly Jude finds it impossible to be around his brother.

This year school have started to integrate them a couple of times a week, doing activities they both enjoy.

We’ve managed a few trips out together, and we’ve had a couple of nights where they’ve both stayed with me.

They’ve been challenging for all of us, but there’s definitely signs that it’s getting a little easier.

We had a holiday

I took Jude away for a weekend, not once but twice, and it was a success! We managed to stay with some family and friends and all share a house near the beach.

There were other kids there, and although Jude often kept to himself, the longer we were there the more comfortable he became.

Some of my happiest memories of this summer were of me, Jude and his cousin spending hours bouncing on a large trampoline together.

More happy social interactions for Jude!

Tommy said “Daddy”

Not only that, I caught it on video! He said it clearly 3 times and laughed each time.

He’s not said it very often since, just like Tommy seems to do with most of the words he’s ever said, but he is developing.

It feels like he’s on the brink of being able to talk, he understands so much, he just struggles to connect it all up.

Maybe 2019 will be the year he breaks through

So that’s what I’ll be taking from our year.

Maybe you should take the time to do the same, reflect on what’s been and gone this year.

Just writing those moments down and playing them back through my mind has made me smile.

It’s reminded me that we have so much to look forward to as well.

Looking Back: Positivity in Spite of Disability

I know it’s a bit typical at this time of year to see a review of the year, but it can be a very helpful thing as looking back is the best way to see how far you’ve come.

Here’s a little review and 3 thankful things:

Last Christmas we escaped hospital on Dec 24th the year before was 23rd and the year before Lydia was critically ill in PICU.

This year, as I type, we have had our first run up to Christmas avoiding the hospital (hopefully it continues).

January we were in our closest hospice with Lydia for a stay as she was well, and we enjoyed a supported stay for a few days

February was pretty quiet.

March took us back to Bristol hospital (about 2 hours drive from home) and we were there into April

This time Lydia had a really bad bug but Bristol children’s hospital were excellent with her, however Lydia had to be shipped back to our local hospital before she was ready for no reason other than political hospital finances.

Eventually she came home at the beginning of May.

We were back in the hospital on May 20th as Lydia aspirated onto her lungs (filled with milk feed) and another stay in hospital began.

Although hospital is rubbish you get to know the people you see frequently, and Lydia had a friend called Alfie (John) who was staying in the hospitals about the same time, so we were able to spend time with him and his parents – friends in similar situations just make these things easier.

In what proved to be a really dark and difficult period Lydia’s little friend Alfie sadly died – this tough little rock star shocked all who knew him as he was so full of life – what can you do or say?

Nothing, you can only cry.

The bleak winter seemed to be extended for us this year but in August the sun began to spring a little bit.

We got a new chair fitted for Lydia and we managed to take her and her sister to West Wales for a week where she got her cool new cap as pictured.

Since then we’ve thankfully avoided emergency hospital admissions as Lydia benefited from some of the changes to her care and help and now, we’re enjoying our first full Christmas build-up for Lydia.

Three things to be thankful for:

The good treatment Lydia got at a difficult time and effective ongoing care

Having the joy of getting to know Alfie and his family

A calm second part of the year and a clean run up to Christmas