New Rule – No Comparing: Special Needs Parenting

He was 5 months old and still very much an infant.

He couldn’t reach his arms to grasp a toy and no matter what we did he couldn’t hold his head up.

I recall telling her that at his age he wasn’t too far behind and if we closed the gap early it would all be okay.

Comparing him to his peers he wasn’t that too far off.

At this point in his life we had no primary diagnosis, only ‘Developmentally delayed.’

I would look at milestone charts and see where he should be.

I would quickly google ‘What should my 5 month old be doing?’

I would compare to his big brother or whomever else had a baby his age.

If there was an exercise on the Internet to increase neck strength you better believe I did it.

As each month went by I did the same thing.

I held the checklist in my hands at his well-baby check ups and I would sob.

Not one.

I could never check off a single thing on those lists.

I still can’t.

Heartbreak after heartbreak.

Comparison after comparison.

I wanted so badly for him to catch up.

The gap between him and his peers has progressively gotten wider. It has taken him 3 years to get to the same place a 5 month old is at.

Three years of extreme hard work and dedication. Three years of immeasurable tears.

He is one of the hardest working kids I know, he’d be the only one if I didn’t know other children with Congential Disorder Glycoslation (CDG).

These kids have to work for e-v-e-r-y-t-h-i-n-g.

Giving up is not an option.

I am in awe of our son and other children affected by CDG. I can honestly say I have never worked as hard as these kids do to achieve a goal.

As I thought about the conversation with my friend I realized that the game of catch up is over.

I’m done.

No milestone charts for me.

I’m finished comparing.

I honestly couldn’t tell you what a typical 3 year old is doing because that no longer matters to me.

The only thing that matters is him and who he is.

It goes without saying that we will never give up.

We will keep pushing forward trying to achieve more, but checking off ‘the list’ isn’t on my list anymore.

I simply want him to thrive.

Instead of focusing on how far he has to go I’m focusing on how far he has come.

Instead of sobbing at the check lists at his check ups I’m bringing my own list filled with what he CAN do.

Instead of googling milestones I’m celebrating progress.

He will continue to work harder than anyone I know. For every. Little. Thing.  And because of that, I can’t compare him. There is no comparison.

Special Needs Parenting: What I Think of Equipment

Not only was I lucky enough to get to attend a workshop/presentation about 24 hour postural care… but I also attended the Kidz To Adultz event at Event City in Manchester.

The whole thing kind of filled me with mixed emotions. My relationship with equipment now is somewhat different to how it used to be.

Each new piece of equipment hauled into our home was a stark reminder of the severity of Amy’s disability and postural care needs.

These days I actively seek out new ways to vary her positions and keep her secure.

It is almost exciting getting a new piece of equipment, especially when it has for example a good tray table or a really effective head support.

From the professionals involved in Amy’s care I always seek out answers – they have seen children with movements like Amy’s for decades, for me their expertise fills me with confidence and I aspire to make them proud in trying to do all of the exercises and therapy we need to do.

I remember when we first got a standing frame and I thought it was to help her learn to stand!

How far I have come since then –  I know now that it is to keep bone density, strengthen muscles, and to maintain good posture (not to mention help with motility issues!)

Before last week I hadn’t realised how important posture throughout the night is.

I know from experience that sleeping on my tummy gives me a bad neck and back.

However if Amy were to sleep that way she wouldn’t be able to counteract it or think to move to a different position.

I learned about scoliosis and hip displacement – things I live in fear of with Amy.

Amy has a lot of dystonic (involuntary) movements and literally does not ever stop moving.

When she experiences a heightened emotion these movements are further exaggerated and can set of a pattern of movements she cannot control.

This can result in pain, frustration, feeling insecure and unstable.

It does upset me a lot sometimes that she isn’t able to just relax and be still like we would; however we play the cards we are dealt and must pro-actively seek out ways to help lessen the possible negative effects.

So it has resulted in Amy being assessed for a sleep system.

It is basically a big sheet on the bed and you slide in foam wedges to ensure her back and legs are straight.

There is also this contraption that looks a bit like medieval stocks that holds her legs straight.

I am told to absolutely not expect this to be tolerated but that if we even managed one hour per night of her in this good posture then it is better than no hours and that hopefully we can build up the time spent in the system.

Personally I am dreading it, but if eventually tolerated it will be like 12 hours physiotherapy for free with no effort from anyone.

We also got told this month that we have an orthotics referral. Amy’s hips are slightly asymmetrical now as she mainly rolls onto the same side and this is actually making one rib go in a little.

So we get to join in the other special needs parents in the battle to find nice shoes that fit well with splints!

We are also getting some gators to help Amy’s knees not buckle when we do our bench standing at home and are also increasing her time spent in her standing frame.

The standing frame is a hated item in our household and even getting five minutes in it can be a battle!

One of our specialists said to me the other day, “You have so much equipment and so much you have to do that you don’t actually realise how much you have learned and how far you come”.

She was referring to the transition into the standing frame, or the assembling of the wheelchair and so on.

To onlookers it looks so impressive in some ways, but to us it is just normality and with each new exercise or piece of equipment we must know why we are doing this, and how to do it most effectively.

It was a nice pat on my back because sometimes all of this physio is daunting and overwhelming.

The event we went to was incredible.

I saw how technology is working hard to make our lives easier.

I loved seeing the new Firefly Splashy and absolutely cannot wait to order one.

Not only will it be amazing in the bath, we can use it in the paddling pool in summer too!

I also loved the switch powered wheelchairs, the bath lifts and so much.

We bought a wheelchair blanket that is fleecy and waterproof… I am so excited to use it as I have been really struggling to fit a cosy toes to her wheelchair and she kicks blankets off.

So this is perfect.

The only missing part of the puzzle for us now is a house that can fit in everything we need.

We are yet to get hoists and bath lifts and so on as our house isn’t adaptable.

I can’t wait to hopefully live in a bungalow one day and be able to save our backs and Amy’s hips and spine!

Comparison is the Thief of Joy: Special Needs Parenting

Since then, my obsessive little mind has looped this over and over in my head and forced me to apply it to many scenarios relevant to our situation.

For example, not looking at a child the same age as mine who happens to be neurologically typical and playing the ‘This is how it would have been’ game.

This is not conducive to positive thoughts and as soon as my mind starts to do the whole ‘Wow, that child is saying words’ ‘Wow that child is toilet trained’ and so on I tell myself ‘NO’.

I also try not to start thinking of silly cliches some professionals throw out there like ‘inchstones not milestones’ and so on.

But sometimes it is really hard not to compare.

It can be damaging, it is not productive, it changes nothing.

Lately all I seem to be able to do is compare Amy’s childhood to mine.

From a young age I remember loving picking blackberries with my grandma, watching films and cuddling up with my mum and dad, eating tasty meals around the table and making deals on how much more I had to eat before I could have a dessert.

It does upset me thinking I can’t just ‘set her free’ on a park to run round and explore.

In a lot of ways I have tried to become more like my younger, more fun self to help show her to be inquisitive and explore.

But it’s about finding a way to make her childhood memorable, and in a good way.

Not peppered with frustration, tantrums, therapies, physical pain and so on.

I want her to know how important her happiness is to us.

It is literally my reason for being, my calling in life now.

We have spent a lot of time lately visiting soft play centres. We have entered a phase in Amy’s development whereby we cannot stay in any one place for a very long time at all.

I voiced this as a concern at today’s neurology appointment and was assured that this is due to short attention span and various other things.

It would seem there is no way to medicate these irritable tantrums that occur after the toy she so previously loved, has after 10 seconds…become absolutely unbearable and must vanish from sight instantly.

We did however get a prescription for some other medications which we will help with movement issues and thus hopefully end the self perpetuating problem of anger turning into uncontrolled movements and this causing further distress.

Anyway, I digress.

The reason for the soft play centre visits (and also countless garden centre or supermarket visits) is that they are a really big place, there is a lot to see and lots of different areas to go to before we have to leave and calm down in the car.

The first time I went I got there a lot earlier than my friend who had got held up in traffic.

Eager to not go in the sensory room until my friend arrived, I cautiously paced around the venue trying to familiarise myself with things Amy might entertain.

I found an area that said “toddlers 0-3” and I thought “ah yes, 2 years 9 months. Perfect age range for us. Yep let’s go and see.”

I disconnected her pump feed, unfastened her from her wheelchair.

She instantly extends and slides out of the seat. I anticipate this and catch her.

She is stiff like a plank of wood. I jiggle her gently and sing to calm her down.

Constant music is needed or she gets dystonic and sad.

I sang the right song… she loosened up and could now take in her surroundings.

I entered toddlerland with difficulty, opening the gate, unable to see if there were any children at my feet, my child casually squeezing at my eyeball… the usual.

My heart started to race as I started to realise that literally NOTHING in this room was suitable for her.

Feeling a bit alone and overwhelmed I felt myself get all hot. “Don’t cry” I kept telling myself.

How silly I am at times.

The other parents started to look at me as if to say “Why is she just stood there holding her child? Why doesn’t she do something?”

I could feel them all trying to predict my next move. Overwhelmed I made for the gate and left toddlerland.

Feeling deflated I made my way for the table and chairs. Carrying Amy and dragging the wheelchair behind me I made a hasty retreat.

I would sit and hold her and sing to her until my friend arrives and then we can all hide in the sensory room and feel normal again.

Sitting at the table did not go down well with Amy who had by this point clearly seen the other children going on slides and running round.

I decided to hell with it, I will go to the sensory room.

Just as I went to stand up a member of staff approached me. “We actually have a sensory room over there… she might like it?”

It was then that I realised we had stood out like sore thumbs.

The staff member had seen me pacing around confused and panicked trying to find a place to fit in and for Amy to be happy in.

I was both grateful and mortified in equal measure.

It was very kind of her to notice that our trip to this place wasn’t going to be like it was for most other people there. She had figured this out and looked for a way to make this a pleasant experience.

The rest of the day went well. Amy loved the lights. (Only with toys playing music and with me bouncing her around etc… a sensory room is a treat but not without noise for her!)

We have since re-visited several times, even just to pass an hour or so.

We went to a bigger one recently and it was incredible. She had an amazing time.

Admittedly it is a struggle…I turn into the militant special needs mum who wants her child to access what everyone else does.

I get her on slides, in high up ball pits – the lot.

This time next year that may not be an option, so I have to do it all now so I know I have done my best. I just hope she has the cognition to understand mummy WANTS to do these things, but sometimes can’t.

It isn’t anyone’s fault. She’s just a big heavy girl and constant in her demands!

It is completely worth it for that smile of hers. Anyone who meets her is totally entranced by her amazing smile.

I sincerely hope that one day places like this set aside more consideration for children like ours.

Why not have slides with a hoisting system so they can be lifted to the top? I know there are some places out there but they are either too expensive or too far away.

I recently found out a local park has a wheelchair roundabout and I can’t wait to visit and see what she thinks.

A Full Time Carer at Christmas: Extra Stress!

There are vital services that we all expect to work through public holidays to ensure our health and safety at all times.

But among those working tirelessly on Christmas Day, Boxing Day and throughout the new year celebrations too are full time carers; unsung heroes who sacrifice their own holidays to care for the needs of others, often at little or even no pay.

Christmas for full time carers comes with so much extra stress as services they usually rely on throughout the year come to a halt for the festivities.

When day care, special needs schools, home help and respite centres all have times of closure for staff to have annual leave the full time stay at home carer is the one left to pick up the pieces, work longer hours and ensure continuity for the person they care for.

Then you have the fact that pharmacies, GP surgeries, dentists, clinics and out patient appointments all cease for a few days too.

For full time carers coping with loved ones with complex medical conditions this not only causes complications but extra worry.

Out of hours call centres have often never heard of genetic conditions or have the training to deal with patients who perhaps are unable to communicate.

Taking a person you care for who has complex medical and communication needs to an out of hours GP with little to no knowledge of their medical history brings risks and worries for a carer so they often care for someone at home when otherwise they would be able to access medical support.

Getting a person who is wheelchair bound or who does not cope with new environments into a clinic there are unfamiliar with presents extra stress and anxiety for a carer who is perhaps already exhausted themselves.

Christmas comes with an expectation of giving to family and friends.

For a carer who devotes their entire life to someone else this brings a huge challenge of finding time to do all that is expected as a friend, a mother or sister whilst juggling the continued needs of a loved one.

There is only so many hours in a day and the pressure on carers to be everything to everyone can take it’s toll.

Carers are incredible people though.

They take on the role of so many professionals without the pay or training.

They do physiotherapy,  speech therapy, play therapy and occupational therapy without realising. They provide stability of care, reliability of routine,  love and attention that no other service or person could provide.

They feed, dress, take care of personal needs and befriend some of the most vulnerable in our society at a time when these people are so often forgotten.

This Christmas Day thousands upon thousands of full time carers will be preparing specialist Christmas dinners for someone they love who for many reasons is unable to use cutlery or sit at the dinner table with family.

They could be providing pain relief, ensuring oxygen is supplied properly or talking to a loved one as they come out of a seizure yet again.

They could be changing nappies or pads, dressing wounds or unwrapping gifts for someone else who can not do it for themselves.

They do it out of love. We owe them our love and gratitude too. It may not be our loved one they are caring for right now but one day it could be.

I am one of those full time carers at Christmas and I know the extra stress that this time of year brings.

To all those caring this Christmas know that you too are cared for. I see the extra stress this time of year brings and I care.

I see you care.

Know that I care too.

Special Needs Parenting: The Balance Between Acceptance, Hope and Perseverance

For many of us we vision them going from babbling to talking, and from crawling to walking.

The men in the family joke about them being the next Wayne Rooney and the ladies dream about them being the next star in The Nutcracker (these are just examples by the way and weren’t ours).

So when that image doesn’t quite pan out, when it doesn’t come so easily for your child to babble or crawl, when your child has to fight so hard to survive what are our goals meant to become?

How far should we push that child to try and succeed in something that many other children do so naturally?

I’m not saying it’s at all easy for all children to crawl and walk, I’ve witnessed many of children take their time doing these things, but they do achieve it in good time.

How much therapy are we to push our child through until we just accept that it’s not going to happen?

Or should we never accept anything?

I’ve recently found myself wondering what I am doing with Zachariah, I’ve become a little confused as to where I want us to go, how far I want to push him and how much I want him to just Be!

Before his Gastrostomy, Zachariah had been quite poorly, therefore having a bath was a struggle let alone therapy and stimulation.

It got me so worried seeing him not eat, get raised temperatures and be totally fed up.

As I was sat there cuddling him and worrying about the way I was holding him and becoming concerned that he hadn’t been in his standing frame for a few days that I realised that I spend so much time consuming these kinds of thoughts.

It was here I realised that does any of that truly matter?

Isn’t it my duty right now to cradle my boy and get him well, isn’t my duty to be chasing up with Doctors and pestering them to get his op date forwarded until they cave.

Why am I here in the midst of a really tough time worrying over his exercises.

Therapy is important of course it is, it’s been very beneficial to Zachariah in many ways, but surely there’s a time and a place and right now it isn’t happening, so why beat myself up over it.

Recently we caught up with a friend, who asked me if I had considered glasses for Zachariah.

I was a little confused by this question and replied saying he’s registered blind and it’s to do with the signals in the brain, how can glasses help that? (she knew this by the way).

She then went on to remind me that eyesight can keep on developing until the age of 7, through brain therapy and stimulation and possibly some glasses, Zachariah’s eyesight could improve.

It was here I sunk and started to feel like a crappy mother, we’ve all been there right?

We get so lost in it all that sometimes we step out of the battle, we lose that determination. I had reached a point of acceptance that Zachariah was blind and that was it.

I didn’t realise I had done it.

We need to find a balance between acceptance, hope and perseverance.

We need to look at what is truly important at that moment in time and not get tied down with masses of guilt, emotion and frustration, yet still have hope that tomorrow is a new day.

Sounds simple right?

But if you are like me, you like to complicate matters by worrying over things that you cannot control.

I’m sorry that there are no answers in my blog as to how we juggle all this, but I hope it helps you to have more peace about your decisions and attitude to your child’s happiness and development.

I hope that you can see that you are doing great!

I guess what I am saying is never accept anything in concrete, have perseverance to change for the better and have hope for new things.

Zachariah never gives up, so neither will I, my policy is to follow his lead! 🙂

Hope I’ve made sense, some things can be difficult to express.

Much love,

Mummy to Zachariah