Independence When He’ll Always Be Dependent 

Parenting is for life, there’s no doubt about that, but having your child live with you, be financially dependent on you, and caring for them throughout their life is another level altogether.

That’s the level of lifelong parenting so many parents of special needs children like mine have to face.

My child will always be dependent on me.

He’ll be dependent financially as even if he somehow managed a supported job (very unlikely) he has no concept of money and he can’t manage a bank account.

He can’t even sign his own name never mind type numbers into a chip and pin machine.

While he will likely receive benefits in his own name that will always require to be managed by someone else, mostly likely myself.

He’ll be dependent physically as at ten he still can’t jump, catch a ball or dress himself.

He will need support to choose appropriate clothing and dress, see to his personal care needs including toilet needs, teeth brushing and hair brushing, eat, drink and remain clean.

It is unlikely he will ever be able to cook a meal, clean or keep a house.

He’ll be dependent on me socially as he has no awareness of others, safe places to go and he he has no speech.

He is vulnerable in every way and always will be.

So, what is the point of helping and supporting him to be independent in anything if he’ll always be dependent all his life?

Well, despite his complex and severe disabilities it is in everybody’s interest for my child to be as independent as is possible.

Just because my son has significant disabilities he has the right to be included and given the ability to do all that he can.

So when dressing him I give him a choice (unless school uniform as he would never choose this) and encourage him to participate in dressing by raising his arms, stepping into trousers and pulling jumpers over his own head.

He may not have an understanding of, ‘inside-out’, or, ‘back-to-front’, etc. but he can still help where possible.

When cooking for him I let him choose by showing him photographs or packets before cooking.

At bath time, I let him choose his own toys and put these in the bath tub. He also gets to choose his bubble bath and pyjamas.

When he can do something, like feeding himself with a spoon, I always let him. It’s great for his self esteem and allows me to do something else at the same time.

I start the zip on his coat and leave him to do the rest. He delights in pulling his own shoes and socks off when he comes in the house.

It would be so easy for me to do everything for him.

After all, he’ll always be fully dependent so why bother?

Well, the more he can do for himself the better he feels about himself and the better I feel too.

It will take much longer for him to master basic skills but the process of teaching him is so worth it.

The excitement on his face when he managed to get a sock on his foot for the first time was worth its weight in gold.

He’s not a, ‘lost cause’.

No child is – ever!

Even the most disabled child needs to be encouraged to be independent in whatever areas they can.

It’s worth the effort for them and for us.

My child will always be dependent on me for sure but if he can do something it’s my job to help him learn it to the best of his capabilities.

It’s about believing in them.

I believe in my son and always will.

Our Family Has A Lot Of, “Stuff”.

I was laying in bed with our 8-year-old reading bedtime stories when I remembered I wanted to remind my husband of a medication change for our 5-year-old.

I quickly ran to the top of the stairs to let him know we were increasing one of his night-time meds and ran back to the bedroom with our older son.

When I hopped back in bed my 8-year-old asked, “Mom, is it harder having a CDG (congenital disorder of glycosylation) kid than a regular kid?”

I asked him what he thought?

“Yep. You have his tube and you have to think about a lot of stuff.”

A lot of stuff.

We do, we have to think about a lot for Christopher.

We have to think about medications, specialists, therapies, appointments, illnesses, and so much more.

We have to remember to administer medication multiple times a day, watch for the warning signs of low blood sugar or an illness brewing.

We have to do daily therapies to help him make progress, inch by inch.

We have to juggle life with our elementary age son and infant, along with getting Christopher to his private therapies after his few hours at kindergarten.

There’s also the IEP, communication with his intervener and school nurse, paperwork for the county, and always fighting for what our son deserves and needs.

But we also have to think about how having a child who is severely developmentally delayed and medically complex affects our other children.

Our 8-year old’s questions keep coming.

He knows his brother was born differently.

He knows that he’ll never grow up and live alone after a conversation when he talked about life when Christopher is an adult and has his own house.

I had to shatter his vision of that when I told him that Christopher won’t ever live without mom and dad.

The response to that was a, “hmmm”, followed by, “I don’t want to know more,” as he hid his head in his pillow.

I worry so much that he’ll resent the time we need to take to care for Christopher.

I worry he’ll feel the weight of the future on his young shoulders.

I worry that we aren’t doing enough to show him he matters just as much as his brother who requires much more.

I worry that he won’t know how much he’s loved.

When I asked him if he thought it was harder having a brother with CDG I anxiously waited for his response.

“Mom, you’re the greatest, *insert kiss*, and I think it’s more fun.”

I know that being Christopher’s brother comes with a lot more.

More patience, empathy, and experiences beyond his age.

I know that our family has, “a lot of stuff.”

But included in that, “stuff”, is love beyond measure.

And fun.

Where Would We Be Without You?!

Today is a day for eating pizza in front of the telly, drinking coffee and attempting to persuade the stress of the year to bog off for just 5 minutes.

I believe it’s called picking your battles.

Until relatively recently, I didn’t really appreciate how important this was – since Sam arrived and I discovered what I was really made of, I’ve often had to battle on multiple fronts, usually over equipment and therapies.

But, never in all my life have I had to battle as hard so over the last 12 months.

It is a depressing fact of SN life, that the very people in place to support families and help them are more often than not the very ones creating the biggest obstacles.

I’ve waxed lyrical about the DFG process, and how it has come close to breaking far too many desperate and exhausted families.

It is THE most appalling process ever devised and it is getting worse.

Over the last 12 months we’ve been pushed to the very edge on a weekly, if not quite daily, basis.

But even in the darkest times, when we were battling for support and equipment while at the same time sitting by our little boy’s hospital bed praying for him to make it through the latest bout of life-threatening illness….

There have been pinpoints of light in the pitch black:

  • Sam’s team of  doctors, who never give up on him.
  • The nurses who remember him as a tiny, critically ill baby with the courage and determination of a lion.
  • The amazing hospice who have managed to fit us in for emergency respite stays when our health broke down utterly, while slaving away behind the scenes pulling strings and applying pressure to various professionals to ensure that what we and Sam needed was put in place, asap.
  • But most of all, I am blessed to have a close network of friends who are family to us.

Who will drop everything and get on a train or drive, without hesitation, from where-ever they are in the country because they recognise the strain in the voice on the phone, or the heartbreak in the words of a text.

Those people have our back.

They do not necessarily have easy lives, many are also SN families and are used to battling themselves.

They are a lifeline and loved more than they know.

So, today as I try to relax a little bit, I want to take a moment to salute those who love us despite the battle scars.

Where would we be without you? x

What Goes Up Must Come Down

It’s true isn’t it, what goes up must come down.

That includes feelings too.

One of my social media friends put a post on recently asking if any other special needs parents ever felt down the day after a good day.

I was like, “Me, me, me!!”

I didn’t think anyone else ever felt like that so never brought it up or mentioned it, I thought it was really silly so I buried those feelings.

But after that post, I wondered how many other parents feel that way?

For example, my son has quadriplegic cerebral palsy so he can’t sit up, stand or walk without any support but recently he’s been doing so well with his sitting positions, he managed to sit on the stairs himself with his big sister and sing and I was SO proud, this is a huge milestone!

We were all on a high that day, laughing and praising Wilson’s amazing achievement of not only being able to balance himself on the step but also doing some actions to a song with his sister!

I couldn’t stop talking about it all day and I took videos too that I shared for everyone to see.

Then the next day I woke up and just felt a bit low and this seems to happen every time after something incredible is achieved.

I’ve been trying to work out why but I haven’t quite come up with an answer yet but I think I’m pretty close.

I think it’s because when something big happens, you’re in the moment and the pride you feel is just like no other and when the next day comes it’s like reality hits you.

Although that milestone was achieved, there’s still that feeling of sadness and guilt that if there were no disabilities involved then your child would be able to do all these things anyway.

I feel bad for even writing that down but it’s true.

Like my example I gave of my son sitting on the step, as incredible as it was (and I’ll not take that away because it really is amazing) he still can’t sit without support, people will see the picture or the video of him sitting and comment how amazing it is that he can do this without support!

But I won’t write down that I wouldn’t be able to leave him, I have to still help him with his balance or he will fall and he still requires support 99% of the time.

I hate being negative and I try my best to see the positive in every situation but I felt like I had to write this down, to let other parents know that they aren’t alone in feeling that awful low after that amazing high.

Doctor, Doctor

I read recently about a study that found that while male doctors were introduced at conferences they were almost always called, “Doctor”, while female doctors were more likely to be introduced by their first names.

The study, published in the Journal of Women’s Health, looked at 321 introductions and concluded that when men introduced speakers, professional titles were only used 49 percent of the time for female doctors, compared to 72 percent of the time for male doctors.

The article got me thinking about how I refer to my daughter’s doctors.

Miss Z has a complex medical background and we have had no shortage of doctors in our lives over the past seven years.

It’s rare for us to go a month without seeing at least one doctor.

Currently, Miss Z regularly sees a General Paediatrician, Neurologist, Endocrinologist, Respiratory Specialist, Orthopaedic Surgeon, Gastroenterologist and Ophthalmologist.

We are fortunate that we see the same specialists every visit, so I’ve got to know these seven doctors fairly well over the years.

Of the above group, three are women and four are men.

I call two of the female doctors by their first names, but refer to all the men by their titles.

Am I accidentally not giving the two female doctors the same level of respect as their colleagues?

If I’m speaking to someone else about the doctor – for example, a nurse or receptionist – I always refer to them as, “Doctor So-and-so”.

But when I’m having a conversation with the doctor, I definitely tend to use the female doctors’ first names more than the men.

Honestly, I’ve got enough to worry about with Miss Z’s health, but, as someone who wants to set an example for her daughters, the more I thought about it, the more the issue concerned me.

And it still troubles me now.

I don’t think I’m inadvertently discriminating against Miss Z’s female doctors.

Nor do I think I’m unconsciously belittling their expertise.

And I have referred to several of Miss Z’s male doctors by their first names over the years.

In fact, I only know the first name of our favourite (male) doctor in the Emergency Department.

I think how I refer to the doctors has more to do with my relationship with them.

Miss Z has very complex health issues and is diagnosed as palliative.

As a result, I see some of her doctors – particularly the two that I call by their first names – more than I see most of my friends and family.

And I’ve had more intimate, emotional, brutally honest conversations with these doctors than with anyone else.

We’ve discussed resuscitation plans, quality of life issues, and high-risk procedures and surgeries.

They’ve seen me cry and they’ve seen me put my foot down and demand action.

The doctors I call by their first names – male and female – are the ones I trust and respect the most.

They’re the ones that I turn to when I disagree with one of Miss Z’s other specialists.

I consider them to be part of, “Team Z” – working with us to keep our daughter as healthy and happy.

It is far from disrespect.

I just hope they know that.


Pearl has moved to a new school.

We’ve moved to a new house.

In the process I have inherited, temporarily, a utility provider I wouldn’t have chosen.

One of the big four.

Impossible to get hold of on the phone unless you have an entire day at your disposal.

The house has been tenanted and I have also inherited all manner of hoo haa about the month it was empty and who was responsible for the gas and electricity before we completed.

I have had two months of letters, increasing in the level of threat, about an amount that I have paid.

All the friendly people I’ve spoken to have assured me. It’s all fine.

But the letters keep piling up.

After six weeks of Extreme Special Needs parenting style summer holidays, tonnes of change of address notifications, DLA and Blue badge renewal application, this extra admin is not sitting well with me.

I am angry. And not, slightly whingey, and passive aggressive, but incandescent with rage.

I am also organized.

More than a decade wrangling with the Local Authority about provision has prepared me for any and every, eventuality.

I have bills, dates, names of customer service providers and a free morning.

I am itching for a fight and ready to wave my disability by proxy card.

I’ve even started a shaming blog post and am prepared to use the full might of my twitter and Facebook followers. (Not as many as all that, but how are they to know?)

Then Sadia answers the phone.

She is delightful, friendly and concerned.

“Oh no,” “I think.

“I don’t really want to get angry with her”.

She utters the magic words.

“I am sorry Jane. Can I call you Jane?”

She’s lovely.

Of course, she can.

“This is not good enough it should never have happened.

Stay on the line, I’m going to sort it out right now”

Local authorities, Service Providers, Governments take note.

Sorry is a word rarely used, it may admit to legal liability.

Sorry though is, ‘the soft answer that turneth away wrath’.

Instantly, I feel listened too and valued.

The rage begins to ebb away.


There is, however, still some anger remaining, and I am determined to voice all of it.

“The thing is, I have a daughter with significant special needs and, I have enough to do over the holiday without phoning you every other day. She needs constant supervision, chasing this has been impossible.”

There is a pause, and a sigh of recognition.

“I’m sorry, I know exactly what you mean. I have a child with special needs too”.

The connection is made.

The problem is shelved while we discuss, trying to juggle work and family life in the endless six-week break, and the sheer exhaustion we both feel.

Sadia goes off, sorts everything out in a few short minutes and returns.

 I thank her and tell her she has prevented a complaint by her decisiveness and swift resolution of the problem.

“They are lucky to have a staff member like you.”

She laughs.

We both agree that patience, resourcefulness and problem-solving skills come as standard after a few years of parenting a non-typical child.

We briefly exchange stories about new terms, new schools and taxis, and wish each other well.

That is the story of how I made a phone call to a huge faceless corporation and came away having had an authentic moment of real connection, because she was good at her job, a great communicator, and because without realising, we were family.

This post comes with a heartfelt thanks to Sadia.

I wish you and your son all the best in the new school term.

Back To School

“Are you excited to go back to school, baby? Big boy now – year 6, this year!”

“Not really, mum.”

Cameron has not found primary school easy if I’m totally honest, I can only imagine what it’s like for him as he’s not one to moan or meltdown to express his emotions.

When I try to talk to him about it he has said, “I can’t think of the words that I need to explain how it makes me feel, mum”!

When I think back, it was year four where things last seemed simple.

He was at this point communicating, well, his speech had come on amazingly and he was now reading exceptionally well.

He had friends and was, “emerging”, as the school reports said.

This was fantastic, he was by no means the best in his class but he wasn’t at the bottom either.

Last year; year 5, was a really rocky road for us as a family.

It was early on in the school year that we were advised to tell Cameron about his autism as he was starting to realise he was different and other children were and I quote, “starting to become less tolerant of him”.

Please don’t think he’s aggressive or difficult – he just is quite vocal; his ticks tend to be car noises or train horns.

He is getting much better at this but understandably he was doing this when he shouldn’t have been and was causing disruption within the classroom.

It was during this year that we were prewarned, emotional maturity steps up a gear with most typical children and there was still going to be a delay within Cameron which meant that him being, “different”, was once more going to become more prevalent.

Now I pride myself in being a supportive mother both to school and my child, I would say, “just ring me whenever there is ANY problem” – and they did!!

It got to the point where my heart would sink when I saw, “Cam’s School”, pop up on the call ID.

The worst thing though – it was mostly really petty things and it was so frustrating that he just couldn’t stop himself.

Time after time I would get in from work and chastise him within 5 mins of being there, setting a dull tone for the evening ahead.

So, this year – his final year – we have the anticipation of finding out our high school choice and if we will have to appeal.

The SATs tests that will set out his start of high school.

Trying to get him to be less naïve and think if there is any possibility that I could actually get him catching a bus or walking a short distance home with some friends…

In all honesty, if someone was to actually ask me:

“Are you excited for him to go back to school, Zowie? Year 6, this year!”

“No, not really.”

What’s Not to Love?!

Now, when I’m asked to describe myself, the first thing I tell people is that I’m a mom to an amazing three-year old daughter with special needs.

However, that has not always been the case.

Several years ago, if you would have asked me that question, the first words I would use to describe myself would be an attorney.

It is a career I worked hard for and am very proud of.

One of my favorite areas of practice has always been estate law.

And while I was pregnant with our daughter, I helped a special needs mom gain guardianship over her adult daughter that has Cerebral Palsy.

As part of my case prep we discussed what brought about the medical condition… complications during the child’s delivery.

It broke my heart to hear that my client had a normal healthy pregnancy, and if her delivery had been different, she would not have been sitting in my office that day seeking a guardianship.

It shook me that something so routine could change a healthy child’s life in a matter of moments.

I prayed that night for God to protect our child from this type of situation because I didn’t think I had it in me to be the amazing parent and person that my client is.

I did not think I was strong enough to raise a child with special needs.

Sometimes it doesn’t matter how much you plan, life has a way of taking over and reminds you that you are just a long for the ride.

Three years into parenting a special needs child, and I wouldn’t change it for the world.

It still amazes me how time and experience can change us.

Sure, most days it is not glamorous, but in reality, no form of parenting is truly glamorous.

No one is ever really ready to have child with special needs.

Especially, when it comes as a complete shock from an illness after birth.

When it comes to children with special needs, you mainly hear and see the bad side of it.

But there is so much good too.

To people who ask the question, “How do you do it?” I typically tell them that raising a child with special needs is not bad, it’s just different.

And everyone has something hard in their life they are dealing with … this is our hard.

These days, I wear my, “Special Needs Mom”, badge proudly, and I have truly grown to love it.

My daughter is, “non-verbal”, but you wouldn’t really know it.

One of my favorite things to do is have a conversation with her.

Sure, most of the time I don’t really know what she’s saying.

But you can tell she means it and it is serious.

Then, there are those rare times (that are becoming a little less rare) when she calls for me or answers a yes or no question. Those times give you hope that there is much more to come.

I also love her smile, and something that is fairly new, her laugh.

I wasn’t sure she would ever smile, but at eight months old it started and it is rare to see her without one on her face.

And the sound of her laughter brings my heart pure joy.

It was a sound I did not think was possible.

But now it’s even becoming a regular thing, and that is the best feeling.

Good things also take some adjusting to at times.

Having a child with special needs requires me to be more personal and conversational with people.

Years ago, I rarely talked to strangers and I would never be caught striking up a conversation with someone I didn’t know.

Not anymore.

Our daughter loves personal interaction, and this draws people to her which in turn draws people to me.

But I have grown to love that too. I am so proud of her, and I love to share her progress and accomplishments with others.

It gives me a chance to educate people on things like therapies, speech devices, and wheelchairs.

I’d have to say though, that what I love most about parenting a child with special needs, is that it has shown me time and time again that I can overcome things I never thought possible.

My husband and I both have come a long way from receiving bad news in a PICU room.

It hasn’t been an easy journey, and there is still so much more to go.

But it has been the best journey of our lives, and I could not image our life without our daughter.

She pushes us every day to be stronger and it is inspiring.

Who couldn’t use a little more of that in their life?

I think about it sometimes and wish I could go back to that conversation with my client several years ago, knowing then what I know now.

I would make a point to tell her what an awesome mother she is, and this time I would not take pity on her because I now know that she doesn’t need it. I would also pray a different prayer that night.

I would still ask God to protect my unborn child, but I would also pray that he guide me to my inner strength that I now know I have, to raise a special needs child if that is his will.

The most rewarding part of being a special needs parent is the capacity at which you find yourself able to love and the compassion that it allows you to have for other.

It is truly incredible.

Goodbye To All That

Hello and congratulations!

Made it through the school holiday?

Feeling smug?

Or, like me utterly exhausted and considering out sourcing your parenting to someone more qualified and altogether calmer?

Is the undoubted joy of handing your child over to someone else, tempered by fear of the consequences?

Then you are probably the parent of a child with additional needs.

Perhaps you love someone spectrumy who is managing in mainstream, but struggles with change and has to enter a new class, with a new time table, and new teachers?

Maybe your small significant other has complex needs and you have to trust someone to keep them safe, well, clean and alive, along with the curriculum?

Do you love someone moving from Mainstream into Special Education, and fear that there will be associated stigma?

Or is your small special person moving into Mainstream?

How do you balance the relief at having time to go to the toilet alone, with the concern that someone else who doesn’t have a parent’s eye is caring for them?

How do you relinquish control?

Pearl is now 11 and has left her beloved Primary School and is heading off somewhere new.

To be honest Pearl, although apprehensive, is excited and looking forward to making friends.

I do however, expect an increase in challenging behaviour and mood swings over the next fortnight.

And Pearl may have some too!

There is always a wistfulness to this time of year.

Taking the dogs out early this morning mist hung in tunnels over the fields.

The blackberries are going over (they have, “the devil’s claw”, an old term I particularly like for the fusty, past their best ones).

There is a feeling of change in the air.

Change of weather, change of season.

Shortening days and cooler nights.

I have been involved in the education system for 45 years, pupil, student, school therapist and mother.

Autumn is intertwined so tightly with the new school year it’s impossible for me to extricate my emotions from the season.

Tomorrow when Pearl puts on her new uniform and gets on a new taxi, to go to a new school I will be tense.

Will they understand her?

Will she fit in?

Will they see how wonderful she is?

Did we choose the right school?

I know I’m not alone.

From experience, I know this season will be replaced by the next, routines will be reestablished, and life will go on.

So fellow travellers, let them leave, take a deep breath, put the kettle on.