Special Needs Families: Love Lift Us Up

The only problem is – as parents with a child in a wheelchair know – you can’t rely on love alone to lift you up where you belong.

Love doesn’t protect you from slipped discs, pulled muscles or lower back pain.

We know. We have been carrying Miss Z up and down stairs in our house for years, and the wear and tear is beginning to show.

Miss Z is now 5 1/2 years old and weighs 23kg (50lbs) and no matter how much we love her, it is getting harder and harder to carry her up and down the stairs.

And it is becoming less and less safe for everyone.

This is not a new issue for us. We live in a two-story house, with most of the living space located upstairs.

We’ve known for a while that there will come a time when we can no longer carry Miss Z up and down the stairs.

However, finding a solution has been a long and difficult struggle.

Initially, we thought that we could build a ramp up the side of the house (which is on the side of a hill).

Unfortunately, it turned out that the incline was too steep to safely push a wheelchair up and down.

Still hoping we wouldn’t have to make major renovations, we looked into the option of a stairlift.

However, it quickly became clear that wasn’t a good option. Miss Z can’t sit independently, so would need extra support and a harness to keep her safely on the chair.

She is also unable to stand, so we would eventually need hoists at the top and bottom of the stairs to get her in and out.

Not to mention a stairlift on our not-very-wide stairs would make it difficult for the rest of us to get up and down.

We were also advised – by a number of people – that we should simply move to a new house.

As if it was that easy!

But that wasn’t a good option for anyone in the family. Not only would a move be expensive, but it would also likely take us out of the area that we have lived in for years.

In fact, it made me a bit angry that it was suggested so glibly, seemingly without regard to important issues that would affect the whole family’s quality of life, like having to change schools and doctors and having longer commutes and less access to public transport.

After a lot of discussion (some of it quite emotional), some invaluable advice from occupational therapists, builders and equipment providers, and a lot of planning, we decided to install a small lift (elevator for those of you in the US) in our house.

It will run from the garage into what is currently the walk-in wardrobe in our spare bedroom – which will be converted into Miss Z’s new bedroom.

Work on the lift begins… tomorrow!

And it is both terrifying and exciting. Terrifying because is it very expensive.

There is very little funding available for home accessibility modifications for children with disabilities here in Brisbane, so we are paying a lot of the costs out of our own pocket. So the pressure is on to get it right and installed on budget.

But it is also exciting because it will transform the way Miss Z accesses the house.

She will be much more mobile, since she will be entering the house in her wheelchair – instead of being carried.

And all our other home modifications hinge on the lift being installed.

Once we can get her safely up and down, we can focus on making other areas, such as the bathroom, her bedroom and the family room, more accessible for her, too.

These changes will make her life easier and help her to engage with everyone.

Love may not be able to lift Miss Z, but Miss Z is going to love being lifted up where she belongs – with her family.

Special Needs Parenting: Enjoying My Boring Life

Being a mother to three boys is tiring and challenging. Lol!

I love each and every day of it though.

My nine year old (step-son but just as much my own as my other two boys) keeps me busy with sports and every-trying life lessons, my two year old keeps me on my toes with therapy and never ending conversations, and lastly my six month old just plain keeps me busy.

Feedings every three hours still, and his horrible, mean, aching teething gums.

Since last update, I am now able to call Aaron my husband. Woohooo! That sounds just lovely.

We have continued life just the same as before we were married, trying a little harder this time to make date nights happen though.

Once again, we are finding ourselves in the middle of a move. Relocation by choice.

Our family has also found ourselves to be the new home to a little kitten we chose to adopt.

We tried once before by fostering a puppy, and realized Oliver just was too afraid of the peppy little thing and would not adjust very well.

With the kitten, we have seen an amazing bond between Oliver and, “Brock Lesnar”.

You see, when you ask a two year old what he would like to name the new kitten, be prepared for anything.. and I mean anything!

My little WWE superstar blurted out the one name that came to his mind, and has stuck with it ever since. We like to call her KeeKee for short (don’t tell him that though).

To our surprise, Oliver took to the kitten like Mickey Mouse and Pluto. Best friends from the get go!

Although he catches himself in the midst of a few battle wounds (from playing around and accidental scratches) he gets right back to tossing around her feather toy and watching her chase it.

Other than another move and the new addition (yet again), things have been very chill around our house.

We are still on routine check ups for Oliver and nothing new has sprung up healthwise (knock on wood).

Therapy is still every Tuesday and Thursday for us, and Oliver has come so far already in progression towards possibly walking one day.

We are always hopeful, but never pushy nor relying.

I myself, have found more work (from home praise the Lord!) and am enjoying the opportunity to once again being able to help provide some for our family.

Plus being able to, ‘adult’, and make money is always good.

Just not always for the checkbook and spending. (Yikes!)

It is always a good thing being able to update family and friends with nothing but a few minor changes and see that my life has once again found the path of being nice, quiet, and boring for a little while.

I know it is not always going to be like this, so if you don’t mind me, I’d like to enjoy every minute of it while I can.

What Is MY Story?

What is MY story??!?

You know, my very own, personal, one-of-a-kind, highs and lows, rain and shine, story.

What has happened, where am I going, what do I like, who do I love, all the important stuff.

Would I sugarcoat the times of heartache and pain and disappointment and stress?

Just how I would tell my story would definitely depend on who my audience is.

I would tell my story very differently to my children, than I would say, to a new friend, or to my work colleagues.

I think I would be more truthful to another parent of a child with special needs when it comes to my child, our joys and struggles, and everyday life.

In this age of smartphones, WiFi, tablets and laptops, we all seem to have our social media/Facebook/Instagram, ‘face’, or image.

We all want to project our very best images, the happy, beautiful, ‘perfect’, images of ourselves and our loved ones.

We thrive on the, ‘likes’, and compliments. But is this really real?

Sometimes it seems so removed from reality to me, like we are paying each other lip service.

We all have a deep-down, innate desire for acceptance, friends, comradery and community.

How much stronger would our communities and our friendships be if we only let down some of our walls, shared what really mattered to us.

If we were brave enough to expose our struggles and weaknesses, and had a chance to support each other in everyday life.

If we made more of an effort getting to know each other’s stories.

It’s not easy telling your story.

Telling not only your accomplishments, but your weaknesses and fears, too.

You’ll find though, it’s only when we are honest and real with each other that we can really relate to each other and find true support.

Our children need to hear our stories too.

They are so thirsty for knowledge of the past- they want to know about their heritage, mummy & daddy’s background, the funny stories, the sad stories and everything in between!

Retelling family events, personal events, hopes, dreams, past mistakes with your little ones (as appropriate to their level), strengthens your bond and is really healthy for your parent/child relationship.

And it’s a good thing to encourage them to express themselves as well.

They are unique, complex, wonderful human beings and we should all celebrate our uniqueness and personal journeys in life!

Special Needs Families: Brothers

I looked at my big boy and asked, “Did you just stick your tongue out at him?”

He wasn’t sure how to answer me, but I prompted him to be honest, and he said, “Yes, he was pulling my hair!”

I laughed until I cried.

Ever since our youngest was diagnosed with a rare genetic condition, PMM2 CDG I have grieved the sibling relationship I wanted so badly for them.

They don’t run through the sprinklers together in the summer. They don’t tromp through the snow in the winter eating snow and happily falling backwards to make a snow angel.

They don’t blame each other for messes or mistakes. They don’t play cars or legos or make believe together. They don’t fight.

Our youngest son is globally developmentally delayed.

He is fed with a feeding tube nearly 24 hours a day and is still very much a, “baby”, according to his big brother.

The questions of “when will he be a kid?” are fairly constant in our home.

With daily private therapy he’s making progress, slowly. He is nonverbal but very chatty and has recently learned to tummy scoot to where he wants to go.

Their sibling relationship isn’t what I imagined. I imagined bubble baths together, car races in the basement, and yes, fights.

The scream of “MOM!” coming from the other room to tattle on the other brother for doing something they didn’t like, and the determined footsteps to come and tell me all about the wrongdoing.

All of the things I did with my siblings growing up.

I wanted them to grow up counting on one another.

I wanted them to grow up always having a best friend or at least someone to share, love, fight, and get in a little trouble with.

Before the sticking-out-of-the-tongue incident our youngest had scooted his way to lay next to his brother. And he pulled his hair.

Brothers. I laughed until I cried because here I am worrying that they won’t have the sibling relationship I dreamed of, but yet they may have just had their first fight.

After this incident I realized my ideas of what siblings “should” do needs to be replaced with what they are doing.

They love each other fiercely, my oldest makes up games that his little brother CAN do, and now, they fight.

And that, is something I have waited for for nearly 4 years.

I did have to tell my oldest that sticking out his tongue at his brother isn’t appropriate and tell my youngest not to pull hair, but the entire time my heart was bursting with joy.

I Cannot See Your Child Today

Being a stay at home mum has enabled me to look after my nieces and friends children from time to time.

I have loved every minute, being home with Zachariah and also getting lots of quality time with the other children I treasure.

However some days, I find myself not so welcoming.

There are days I just cannot face seeing other children, but instead I would lock Zachariah and I at home and spend the day hibernating.

I was confused with my own actions but knew that I couldn’t handle it.

One of my closest friends has a little girl who is just 2 days older than Zachariah, they have both been the bestest of friends since they were 3 months old.

Despite my awesome friendship with her parents and despite how much I love this little girl and enjoy her achievements, there were days I couldn’t face them.

I remember when she started walking, my two sided heart was overjoyed but also saddened, trying to imagine Zachariah also walking.

I recall one day her Mummy texting me, asking if I fancied a brew or for me to look after her daughter, and I quite blankly replied “No”.

The factors usually behind me not wanting to see other children are usually during long periods of illness or after big appointments, it was whenever I was feeling low I guess.

Just some days it can be too painful to make your child’s lunch whilst my son has his pumped into him.

It can be too upsetting to see your child play with my sons toys whilst he sleeps off a restless night.

It can be too hard to hear your child tell you they love you or explain to you what they would like whilst my son cries hysterically as I desperately try to find what is causing the discomfort.

Some days I just cannot see your child.

Most of the time however, I love seeing your child, I love how they greet Zachariah by coming up close, touch his hand and say hello.

I love how they bring toys to his tray, and I love how much they care for and love him.

Rather than comparing our children, I need to see how beautiful they’re friendship is and how much my son has taught your child.

Another time I struggled was seeing children significantly younger than Zachariah start reaching milestones.

Out of everything, it was the holding of a sippy cup that hit me the hardest.

I’m not sure if I was feeling extra delicate that day or if witnessing my friends little boy hold a cup was a real big deal for me, but it brought up so many emotions.

Milestones are something we’ve had to adjust, we no longer follow the typical milestones, but instead set small reachable goals within 6 weekly periods for Zachariah.

Since doing this, it has made it slightly better to handle, as I’ve put Zachariah on his own development path rather than sitting him on the graph with all the other children.

I think that is the key right there, I’ve written about comparing before and realised that the minute you put every child on their own development journey the minute you start comparing less and getting upset less too over what your child can and cannot do.

I have also realised that it is best to be honest.

By telling my friends why, it helps them understand me more, helps them see where I struggle, this then makes our friendship even more special and intimate.

I love and celebrate all children, but some days I just cannot see your child.

Searching for Others with the Same Rare Disease

In December 2012 I took my just turned 4 year old son to hospital to see a neurologist. A few months before he had had an EEG test and we were apprehensive about getting the results.

Six months prior he had been diagnosed with severe autism and global delay. We knew there were links with epilepsy and were expecting to hear if this would be the case for us too.

It was a huge relief to hear the doctor tell us it wasn’t epilepsy. But we had more to take in than that.

The specialist suspected there may be something causing the seizures, large head and learning difficulties so she asked about any birth marks.

My son had loads of them!

With a large head, multiple cafe au lait marks on his skin, learning difficulties, an abnormal EEG, and freckles under his arm pits the specialist suspected our son had a rare genetic condition called Neurofibromatosis type 1. 

His twin sister was with us but she had none of the signs.

I also had no signs so the doctor looked at my husband since NF1 is often inherited.

He had mild learning difficulties, multiple cafe au lait marks everywhere on his body, a large head, freckles under his arms and over a hundred neurofibromas all over his body.

The doctor was shocked that at 55 years of age none of these markers had ever been picked up on and he was diagnosed too with Neurofibromatosis type1 on the spot.

We went to hospital for one thing and left with half our family diagnosed with a rare genetic condition.

It took time for that all to sink in. My google search history was full of all manner of things related to nf1.

It may be a rare condition but in actual fact 1 in every 3,000 people have it.

The town I live in has a population of 53,000 people. If 1 in 3,000 people roughly have the same rare disease as my son and my husband this potentially means there are another 15 people in my town alone who may have neurofibromatosis type 1.

The population of Great Britain is roughly 65.1 million so that could mean there are as many as 21,700 people living with neurofibromatosis type 1 in Britain. 

What if like my husband they have no idea?

Neurofibromatosis type 1 causes tumours to grow on nerve endings throughout the body. It can cause serious problems for some including brain tumours, disfigurement, blindness, amputation and epilepsy.

For others it can be a case of having birth marks but having no idea of the significance of them.

Through charities and support groups I have had the honour of meeting other families who have NF1.

Of the possible 15 others in my town I have met two so far. I have met and connected with many others throughout my country but nothing like the 21 plus thousand estimated to have NF1.

I plan on keeping searching for others.

I remember feeling so scared and alone when my son and my husband were diagnosed and I wonder if others feel like that too.

I wonder if any other families struggle with so many appointments and doctors who know very little of your child’s condition?

Does anyone else continually feel their child’s body for lumps?

Do other adults struggle with their self esteem like my husband due to how they look?

When you live with someone with a rare condition connecting with other families in the same position brings a special bond.

We are in this together.

We know there are many more of us out there…even in the very town I live in..

I hope one day we might somehow connect.

Rare Disease and the Dangers of, “Dr. Google”.

That’s how we felt when my partner of 10 years was diagnosed with X – Linked Adrenomyleneuropathy (AMN) Yep, it’s a mouthful right?

We weren’t even told during an appointment, we were sent a letter from the neurologist, and discharged from his services because he wasn’t a specialist in it.

Then I did something that no one should ever do when in a situation like mine.

I hit GOOGLE. And I really shouldn’t have.

It took me to the very worst-case scenario and made me so anxious that I didn’t even tell my partner what this diagnosis meant.

We then had to wait for another team of specialists to pick up his case and explain this to us.

My anxiety skyrocketed.

AMN is a neurological disease that affects the organs below the waist. The nerve endings protecting the spinal cord were disintegrating, making it difficult for the brain to send messages down the spinal cord.

In effect, it was stopping his legs from working properly and causing him severe pain.

His mobility and balance and quality of life have been severely affected.

This genetic condition is so rare, that even the geneticists and neurological team are working on experience rather than facts, because there is little evidence of what works, or treatments plans available.

Each person that is affected by this is completely different.

It isn’t textbook stuff and so the medications used to treat his pain, or balance are trialed and discarded at an alarming rate.

Thus far he has been through about 6-7 medications with little or no benefit. Because the pain is neurological there really aren’t a huge amount of options, and we are nearing the end of possibilities to help him have a better quality of life.

As if this isn’t enough, our children are also diagnosed with autism and ADHD.

Our two girls are obligate carriers for X – Linked Adrenoleukodystrophy (ALD), so they are closely monitored for any changes in their health even though it is considered very rare for girls in childhood to show symptoms of this debilitating disease.

As the whole family seems to be hit by some kind of genetic abnormalit.

We have been referred to the 100,000 genomes project.

This is a study funded by the NHS that recruits 70,000 patients of rare diseases and cancers to have their whole genomes decoded and analyzed to find specific gene mutations.

This study is the first and largest of its kind in the whole world, and could pave the way for future diagnoses and treatments of people with rare diseases and cancers and those who are simply named SWAN (Syndrome Without A Name).

I feel privileged to be a part of the part of the future in this study and hopefully one day there will be more research and available information on the rare disease that my partner suffers with.

So that it can enable people like him to have a better quality of life.

If you are taking part in the 100,000 genomes project then please join this facebook Support group.

Special Needs Parenting: The Boy Who Defied Predictions

Far from being the non-interactive, non-communicating child we were not-so-gently warned to expect, he has grown into a gorgeous, happy little soul who can indeed communicate (very clearly too when the mood takes him!).

However, one area that we have struggled with has always been his mobility and muscle control.

Sams low tone means that its harder for him to support himself; his neuro issues mean that he experiences an alarming amount of abnormal movements, and struggles to make his body move in the way he wants it to.

This has increasingly led to frustration for him, and us.

He’s trying so so hard, but his brain struggles to send the right messages to his limbs. It has taken us the best part of 6 years to build his strength up enough for him to now be developing a sit-balance, so we always knew independent mobility for Sam was a distant future prospect.

I have no doubt that he will stand, and walk, in time.

So you will understand why, at our last Child in Need meeting at school, I ended up crying on his teacher, nurse and social worker (who has now sadly left the service… and what a huge loss it is).

As the meeting was at the end of the school day, Sam joined us with Amanda, his class teacher.

It was obvious to all that he was excited about something and Amanda kept grinning at him and telling him ‘not to tell!’.

Curiosity piqued, we had to know what was going on… Amanda then produced one of the school’s tablet computers and proceeded to show us a short video of my little man, trialling a power wheelchair and driving it BY HIMSELF.

This is a sight that we have longed for, and had not expected for many years yet.

He knew exactly what he had to do – he’s been watching the other children. Learning. Taking it all in and working out what to do, for the past 18 months!

I think I had tears coursing down my face all the way home, while one very happy, very proud little chap chattered away to me from the back of the WAV.

My little man, the boy who continues to defy predictions.

Reactions to the Wheelchair

Last year Brody outgrew his buggy and we found ourselves at wheelchair services being measured for our first wheelchair.

I’ll admit I had mixed feelings about it at the time.

Not because I was ashamed or embarrassed but because I was sad that we needed one.

It wasn’t something that I had envisaged as part of Brody’s future.

It was one of those little reminders that Brody isn’t following a typical path and one of those appointments that left me having a cry in the car afterwards.

But the wheelchair has been great. Pushing him in it is much easier than the buggy he was too big for.

And sometimes it helps by providing a quick explanation to strangers when he has challenging behaviour.

I suppose because with a wheelchair disability is quickly visible.

But it took a while to get used to having it because I wasn’t prepared for was the reaction of others.

Sometimes I have found people see the wheelchair before they see Brody.

And sometimes I’ve felt like I have to justify him having one.

The first time we took Brody out in it I couldn’t have guessed a piece of equipment could attract so many glances.

And whilst in reality sometimes it has been my imagination, you fast get used to people looking and learn to ignore it.

Sometimes it’s the same look that gets thrown your way when you park in a disabled spot by an ignorant passer-by who thinks you don’t have the right to.

The one before they see the wheelchair in your car boot or hear your child makes a noise that suggests that they aren’t a typical 5 year old.

There is a real lack of awareness of invisible disabilities and I think if you don’t have a wheelchair and your disability isn’t immediately visible, you come across a lot of rude people when parking your car in a disabled bay.

Sometimes it’s a child asking their parents about Brody, who mostly in hushed tones tell them to be quiet. I get this.

They are just trying to avoid awkwardness and are worried about being offensive.

Talk to us though.

Honestly no one ever minds polite questions and Brody loves other kids when we’re out and about.

Sometimes it’s a person who just stares…and stares. And I wonder if they realise they’ve been staring for so long or if they’re just incredibly bad-mannered.

Sometimes it’s because we are walking with Brody alongside his wheelchair. You suddenly feel like an Andy and Lou sketch from Little Britain. It’s amazing how many people think that all wheelchair users can’t walk at all.

Brody can walk but he can’t walk distances. His legs tire easily and they give way.

Some days they’ll just give way regardless of whether he has been active or not because he has low muscle tone and hypermobility.

He also has the tendency to refuse to walk and no danger awareness.

So we need the wheelchair for when he can’t or won’t walk because he is too heavy for us to carry him.

This means we need to take it with us everywhere.

At the end of the day a wheelchair just takes a little getting used to. But it’s a must have for us and really helpful.

And of course, the reactions aren’t all bad.

Sometimes, a friendly stranger just wants to say hello to a beautiful face and add a, “Nice wheels”.

I suppose when you first get a wheelchair, or at least when we did, you can feel at times like all eyes are on you and your child. And it can feel uncomfortable.

But the reality is we all look at one another and there are always going to be people who are ignorant to disability or just like to stare – whether you have a wheelchair or not.

So – we’ll just keep on rolling…