“Your Child Does That Too?” The Bonding of Special Needs Moms

Your heart changes and you discover gratitude for things once unappreciated.

While this new life certainly brings immeasurable joys and intense thankfulness; it can also bring isolation and solitude.

Time for yourself.

That was something you once knew, but scarcely stumble upon anymore.

Visits to doctors, specialists and therapists now fill your days.

As for myself, sometimes I feel like a recluse.

Things that I once had in common with people from my old world have become lost.

That is not a complaint, just a fact of the way things are now.

However, since venturing into this vast new world, I have been lucky to find others along the way that are walking a similar path to the one that I travel.

When that happens, the feeling of isolation begins to melt away.

At a recent therapy session for my son, while making small talk with another mom, a sweet moment of EUREKA occurred.

Listening to her talk about the adversity her family had faced on their journey and also the bliss and hopefulness that has come along with it, we found striking similarities in our lives.

Although no two situations are identical, there was such a common ground between us.

We shared experiences and spoke of the immense love we have for our children.

We nodded while listening to each other and acknowledged familiarity.

We talked of seizures, meltdowns, homeschooling, feeding difficulties and medications.

We discussed IEPs, MRIs, AFOs, surgeries, syndromes and advocacy.

We were speaking a language that special needs parents become fluent in.

I would compare experiences like this to being alone in a foreign country and crossing paths with someone who fully understands your native tongue.

Meeting and having a conversation with someone who absolutely “gets it.”

This mom and I now gladly greet each other each week and pick up our conversation where we left off.

Every week I genuinely look forward to going to this particular therapy session.

It is one hour out of the week where I enjoy sitting outside, watching my son engaged in equestrian therapy.

It is one hour where I sit and talk face to face with another mom who works tirelessly and would do anything for her children.

Another mom who fights for them with her every breath.

In this hour, I feel less detached from the world and much more included.

This time is always so very therapeutic.

Not only for my son, but also for me.

Special Needs Parenting: What I would say to my 19 year old Self

Those hugs and kisses will come, don’t worry.

The doctors and nurses just need to make sure he’s stable enough to withstand being handled, they need to get his seizures under control and help him breath. Those machines you can see, those beeps you can hear. They’re all there to help him. Those meetings you keep being called to, the plans around resuscitation and blood transfusions. They’ll eventually end – with a much better outcome than you’ll be told in the meetings – you ARE going to take your baby home.

Throughout his life, I can tell you – You’re going to scream, scream louder and harder than you thought you could. You’ll scream for many different reasons. You’ll scream with happiness and excitement when you see him reach milestones you were told he wouldn’t.  You’ll scream in fear, fear that he’ll lose the battle this time, will this be the seizure that’ll mean the end? You’re going to laugh, you’ll laugh a lot. At his funny little smile, his cheeky personality.

You’ll laugh at other people’s ignorance towards ‘real’ life. You’re going to cry, yeah…a lot. The crying part really hasn’t stopped yet. It won’t be all the time, just the dark days – the days when you realise, just how different you and your child are from the rest of your friends and family. Some will even be happy tears – like when you’ll hear him laugh, it’ll take a while for him to do it. He’ll be around 18 months, and some will even say it’s not a ‘real’ laugh, but you know it is, and it’ll be your favourite sound in the world – then his yawn will be the second! You’ll smile. Those smiles will be around more often as he grows, I promise.

You’ll even learn to smile at the professionals who’ll say he can’t do something, he’ll show them. You’ll feel alone, alone in a room full of people – specialists, physios, OTs, paediatric doctors, neurologists, learning disability nurses, feeding experts etc, whilst they’re all talking about what’s best for your child. You’ll feel inadequate – Useless. I mean, I can see you thinking “What do you know? You’re just a kid yourself, how will you ever understand these big words and their medical terminology?”. Well, let me tell you…3 years down the line and you can still shock doctors and nurses by how much you know.

You’ll even be able to tell them some things about your son that they don’t know! You’ll feel guilt, like you’re somehow going to fail him. Don’t worry – you won’t. You’ll feel like Super Mum sometimes. When you’ve juggled 5 appointments in one day, you’ve planned feeding times and strategical naps between them, just to make sure your son has a chance to show his potential in front of the physio! You’ll be more scared than you’ve ever been before – you’ll spend hours upon hours in the resuscitation area of a&e, you’ll watch your child fight for his little life not once, not twice but three times. 3 weeks before he turns 3 you’ll be sat in the paediatric intensive care unit, learning how to do gastronomy feeds and how to manage his epilepsy. You’ll spend that birthday in hospital, but don’t cry about it. It’s for the best. You’ll grieve, grieve the child you’ve never met, the things you’ve missed out on as he has grown. He might not be able to ride a ‘normal’ bike, but you’ll get a specialist one provided by an awesome military charity, you’ll be SO excited when you see him ride it!

You’ll deal with seizures, surgeries, medications, hospital stays and you’ll start to feel like a nurse in some ways. You’ll have listened and watched many students be trained, you’ll think you can do it yourself! You’ll feel like a pharmacist, your medicine cupboard looks just like the pharmacy, bursting at the seams, but you’ll have it organised and neatly set out – you’ll know what you’re doing. You’ll be his PA, making and taking phone calls, planning and rearranging appointments around his other commitments. You’ll think you’re doing it wrong but you’re not. You’re learning. You’ll feel the lowest lows you’ve ever felt but I promise you’ll also the highest highs there are. The two will actually be pretty close together. Like the time when he was 12 months old and he said “HIYA!”, but not long after, a seizure will come along and wipe it all away. You’ll feel love stronger than ever before, see courage, strength and determination shine through that little person. He is going to be just perfect. Maybe not to the world around him, or to the doctors who will prod and poke him. But he will be YOUR perfect. And do you know what? Everything is going to be okay. You’ll just change your meaning of ‘okay’.

Encouraging Independence In A Child With Cerebral Palsy

However, it’s gotten a little longer since we have the new GoTo Seat.

We ordered the original GoTo Seat as soon as we heard about it.

We were thrilled with the opportunities it provided Danny.

He could ride in a shopping cart, sit in a high chair, and we used it in an adapted motorized car.

While the original GoTo Seat opened up new experiences for Danny, there were some things he still could not do.

We brought the new GoTo Seat to Texas while we visited over Thanksgiving.

It arrived the same day we left, and barely had it out of the box when we packed.

I immediately saw a difference for Danny with the new seat, and the floor sitter is genius.

He has enough support with the new headrest and lateral supports that he can easily keep his head up.

His trunk is more fully supported so he can use his hands.

He was able to sit alone and press buttons on a toy.

He sat and watched a cartoon by himself.

Danny and his cousin sat next to each other on the floor and read a book.

Danny’s list of things he can do own his own continues to grow.

For the first time in Danny’s life, he sat on the floor and played all by himself.

For the first time, he played contentedly while I got a few things done.

For the first time in four years, I put away laundry, brewed a pot of coffee, and read the first page of the newspaper without holding Danny or pushing him along with me in his wheelchair.

For the first time in Danny’s life, he cried when I got him out of something instead of him crying to get into my arms.

The seeds of independence have been sewn.

Like all toddlers, he is learning the joy of doing it by himself.

He is comfortable and safe and happy.

He is now able to have life experiences that are his and his alone.

As small as these experiences may seem to be, they feel pretty monumental.