“Let’s go to the mall and you can walk him around in the wheelchair.” “I’m here for you, call me if you need me to get you a gallon of milk…. or something.”

But then what happens? You guessed it we never hear back, and if we initiate contact, well we’re either put off or something came up or they will be perpetually busy until the end of time.

Those types of social responses are usually more to benefit the person saying them than the person they are intended for.

It simply sounds good in the moment. Yes, I’m here for you – but not really.

It’s something that is said to pacify a moment, usually an awkward moment that makes another person, whether it be a friend, acquaintance, family member or even a stranger feel better about the fact that they don’t know how to incorporate you and your child with special needs into their world.

What they fail to realize is if you extend these types of verbal offers that many of us do hope you’ll follow through.

Our days can be such messy chaos that we’re itching for an opportunity for a cup of coffee and conversation that likely has nothing to do with our special needs life.

We want someone just to say hey let’s have a warm drink and chat about how the weather just sucks and my yard is so saturated it’s literally a swamp.

Simple, harmless conversation that doesn’t at all make you feel uncomfortable.

We will spare you the conversation about the appeals forms we’re filling out, and how SSI wants all their money back, and how we only got two hours of sleep because we fail to know to how to comfort our non-verbal child, or why he threw up because he can’t stand the sight of strangers, or cried when I had to leave him in grandma’s arms just to go to the store for 20 minutes because I had nothing to feed my family.

We won’t tell you about any of that.

Because we know that would certainly guarantee that we’d never be extended a second invite to get together.

While it would be genuinely nice if others took an interest in those things, we know that those are typically our crosses to bear behind closed doors.

The unspoken life of a special needs family that no one really wants to dive into, digest or discuss.

Sure, life can get busy for any of us, special needs or not, and sometimes things have to be rescheduled or postponed. There is no one better who understands that than a special needs parent.

But to continually make these kinds of offers when we all know better starts to feel a bit insulting.

If you really don’t want to do coffee – that’s okay.

If you think it would awkward for your typical child to play with my child in a wheelchair – that’s okay.

If it would be boring for you to walk around the mall while I try to soothe my irritable child with special needs – that’s okay.

If it would be an inconvenience for you to help me get an item from the store – that’s okay.

Just don’t say it unless you mean it.

Take a cue from my youngest child, and just say: “see you later alligator”, and you can say: “after a while crocodile.”

See it works, no expectations on anyone’s part.

And if all else fails you can always respond.

“Don’t say it unless you mean it.”

I say one for the dads as most of the blog posts I see are all directed at the mothers of special needs children. Well, I think the dads deserve some recognition too!

So, what’s so special about a special needs dad then? And why don’t they get the praise and uplift that special needs mums do? For us, we have many reasons why my sons dad is so special…

He’s our rock

Right from day one he’s always been the ‘strong’ one. The one who takes everything on the chin.

He puts himself and his feelings last when it comes to mine and our sons. He’s always there, on the other end of the phone to reassure me after we’ve been to a not so good appointment and he always there to wipe the tears and pick up the pieces when it’s all got a little too much, because if daddy says everything’s okay – it must be.

He’s our provider

He works all the hours he can and does his very best to make sure we have what we need.

Staying at work over the weekends to save spending money on fuel if he knows we need to save for something (that’s probably extortionately priced, as most special needs stuff is!!)

He’s our son’s idol

Although Aj doesn’t speak, or really show any kind of affection. It’s beyond obvious the love he has for his daddy.

There are certain smiles that only daddy can get, I’m guessing that’s because the two of them are so alike, they’re both like mischievous kids when they play together.

We visited the zoo this weekend, and Danny was pushing Aj in his wheelchair using Aj’s feet, not caring about the strange looks from others, Aj was happy – and that’s all that mattered to him.

They have a very strong bond together, they’re inseparable when he’s home at the weekend! Danny sees past Aj’s disabilities and problems, he sees his little boy, his perfect little man. They even sleep holding hands!

He’s the optimistic one

To him, there’s nothing Aj cannot do. He is always willing to give something a try, and very rarely will admit defeat.

He wants Aj to have a chance at everything in life, he sits him on his knee and holds his hands pretending to drive in the car, they sing, dance (with help from daddy), they wrestle (while Danny is stretching Aj’s muscles), they play on the trampoline and lounge in the jacuzzi.

He does all this even though it takes so much effort to help Aj do things and he rarely shows must interest, but he knows he’s helping Aj by doing his Physio through play.

So, what I really want to say it THANK YOU. Thank you for everything you do for us and thank you for never giving up. Happy Father’s Day, super dad!

Father’s Day is a time to express my appreciation, for the love and care you give me.

I may not be able to verbally tell you thank you for all that you do for me. But I try to tell you with the delight in my smile and the twinkle in my eyes when yours connect with mine.

I know that you are unlike most other Dads, that get to teach their children to throw balls, cheer them on at sporting events and dance recitals.

That your dreams for me have had to change into simply living the best life possible.

Yet, your dedication and loving care has never diminished. You never fail to comfort me after a long day of therapy or tell me how proud you are of my smallest achievements.

You’ve done your best to financially provide for all my material needs, while swallowing your pride knowing when you had to ask other sources for help to provide for the costs associated with my care.

Your efforts making it possible for me to engage in family participation opportunities, and be apart of the world around me.

You share the bittersweet journey equally with my mother, and offer her relief when she needs it, by bringing her a cup of tea or telling her you’ll give me a bath so she can have a moment to sit down. Your devotion for keeping the entire family full of love, hope and faith never waivers.

I know that I can never disappoint you.

That just by being who I am makes you beam with pleasure and delight. You have single handedly taught me about the significance of my self-worth.

You have coached me into a great understanding of unconditional love and have taught me that every life, including mine – no matter how broken it’s perceived to be by others, is of great value.

You’ve shown me the importance of working hard towards goals, and knowing it’s okay if you I don’t reach them because you know I gave it all I could.

Creatively you’ve found ways of adapting life so I could be a part of it.

Late nights after long nights on the road at work, you’d come home and re-wire a toy, find a way for me to activate a button, or work on helping me finding my voice through eye gaze communication technology.

Your patience and encouragement never ending. I know that I’ll always be your little Buddy.

To the man in my life who is my real life hero, my Dad.

Thank you for always believing in me. Happy Father’s Day to all the incredible Special Needs Dads.

You are at the center of the Special Needs Journey.

And we honor you for all that you are and all that you do.

I cancelled my annual doctor visit three times until I finally made it there last month.

None of these things should be that hard.

Yet, there it is.

There is never enough time to think about me.

Most parents experience guilt in raising their children.

We parents never feel like we are enough.

We are plagued by our inadequacies and frequently torment ourselves regarding our shortcomings.

Our children come first, always.

Their schedule, their needs, and their desires drive our every move, every day.

If this is true for most parents, than parenting a child with a disability is this experience times a million.

Danny just has so many needs.

He has a home physical therapy program, extensive feeding needs and a blenderized diet, vision therapy, center based therapies, doctor appointments, school, and personal care needs.

If I choose to vacuum or pick up a prescription, it ends up taking time away from something else.

I feel guilty for folding laundry with him because then I know we won’t have time to work with the light box before we go to hippotherapy.

There seems to be a constant trade-off, and it is very difficult to ever put myself ahead of my son’s needs.

This is simply not okay.

There are no awards for mothering martyrdom and I know that it will eventually catch up with me.

Everything that you read about parenting children with disabilities says that you must take care of you.

It is vital for caregivers to meet their own needs in order to have anything left to give to their children.

I couldn’t agree with that more.

My question is this: what do I sacrifice in order to take care of me?

Does that mean we don’t take that neurology appointment because I already had a haircut scheduled that day?

Do I cancel hippotherapy because it conflicts with a yoga class?

Does Danny miss his vision therapy because I want to have lunch with a friend?

These are the choices that I continually face, and when in doubt, I choose Danny.

However, I do need to resolve to ask for help.

We have a tremendous support system, and I know how lucky we are to have our circle of family and friends.

I need to evaluate how much of this Danny needs me to do, and how much I can help other people help Danny.

In order for him to develop more independence, I am going to have to learn to let others step into the caregiving role.

There is nothing more difficult for me – no one knows him like I do.

They never do it quite right.

However, that is on me.

When would they ever have the opportunity to learn if I never allow them to try?

I must learn to let go.

My entire identity has become “Danny’s Mom.”

In order to continue to do that job well, I need to become a bit more “Laura” again.

The seizures themselves are bad enough, but the medications used to try and suppress them are every bit as bad.

In effect, we have to give our child medications to slow his brain, then the Professionals wonder why he struggles to learn/demonstrate what he knows.

Recently Sam’s seizures have been getting out of hand again – having been NG fed for the past 6 weeks he has gained considerable amounts of weight, which will inevitably knock his seizure control.

Things get really complicated when you know that the NG tube made his reflux infinitely worse, leading to chest infections and several very scary moments.

Last week Sam finally went in for his PEG insertion, the PEG is now in and healing nicely.

So, after weeks of frustration and keeping the neurologist informed, we’ve now got a plan to change his meds. And it is a scary one.

Sam’s neurologist has very set ideas on how he wants to proceed – he rarely shares this information with the parents, however in 4 years he has rarely made a wrong call over Sam and his care.

So, when he recommended removing one of the meds Sam has been on for many years in favour of increasing the dose of one we really aren’t keen on…. let’s just say it’s quite a leap of faith.

But I trust this man with my son’s life, literally, and he hasn’t let us down yet.

Two nights ago, we started the changes…. one medication reduced, another kept the same, and the third increased.

The problem is, although the aim is to keep a balance, the medication that was reduced has been crucial in helping Sam for most of his life – however, as the neuro said, it has some very serious side effects which are non-reversible.

If it had made Sam seizure-free he wouldn’t take him off it, however the pros no longer outweigh the cons.

The reduction left Sam vacant and groggy, as the increase in the third medication isn’t yet enough to counter the reduction in the first. It takes a lot of gritted teeth to battle through on days like that.

Seeing my usually happy little boy completely polaxed, non-interactive and STILL fitting is a tough call.

But today, we may be starting to see light at the end of that particular tunnel – Sam has been happy, laughing, chatty and full of life again 🙂 This is also not unusual with meds changes; my boy likes to throw everyone a curve ball and respond positively initially to changes, only to acclimatise to them within a few weeks.

Again, this is not uncommon in children with his type of epilepsy but is incredibly difficult as a parent to deal with.

So, for now, we’ll happily take this (possibly brief) break in the storm and make the most of this precious time with our little man, while he’s lucid and at his best – because you never know, this time it might be the real thing x