Special Needs Dad: Why He’s so Special

He built lego monuments and fixed bikes, basically all the fun things that dads do.

Mums (in my eyes) look after the house, do the taxi runs to football, swimming lessons, youth clubs and after school activities, I cuddle them when they are sick and bandage the cut knees.

Well that turned around big time when I was admitted to hospital 10 weeks before our due date with baby number 5 now known as Jack.

Ronan became the Dad that did the house work, the school lunches, the school runs. He was the taxi driver and still had to work to bring in the money.

He did the 100 mile journey every day to visit me while I lay in hospital on complete bed rest protecting our wee bump who doctors feared may not make it…

With not enough hours in the day to even sleep, I really don’t know how he did it and he never once complained or grumbled about what he was doing.

Other family members and friends came to the rescue and made dinners and looked after the other boys while he worked and never missed an appointment or scan relating to Jack….

6 years on and I can safely say he’s a fantastic Dad who works really hard and still attends most if not all of Jack’s appointments.

Ronan is one in a million, he juggles his work and his love for cycling and running around all us.

Some days he comes home from work and if I’m having a particularly hard day with Jack, poor Dad will have to start dinner or take Jack out until I get dinner ready or maybe just order a takeaway, he takes the other boys to places they want to go too, and that’s a lot, lol.

While I deal with all the form filling, the filing and organising of appointments which certainly takes its toll on you, it can be overwhelming at times and sometimes the extreme volume of it all leaves you so exhausted you just want to throw the towel in.

That’s when Ronan jumps in to the rescue, he will sort the hard to get appointments and deal with the letters to local MPs, liaise with consultants to get what Jack needs.

I suppose I better say he deals with my nagging as well but he’s used to that after almost 20 years of marriage lol.

He’s our rock and we’d be lost without him, he’s the most fun, loving, caring, dad and husband you could ask for, he’s there to pick you up on a bad day, say hi when you’ve not had any adult conversation for hours, whisper I love you on extremely hard days, hold your hand and hug you just because he knows it’s what you need…

And while he carries the weight of the world on his shoulders with trying to keep us in the luxury things that we have, he will continue to provide for us all, maybe we should be more thankful and ask him more about how is day is?

But I don’t think it would matter because even if he’s had a bad day he’d just get on with it and not complain, we wouldn’t change a single thing about him and we wish him the best Father’s Day ever and love him so much.

Don’t forget to enter the #FireflySuperdad Competition

Charity & Grant Funding: Family Fund

​Family Fund: Who Do They Help?

The Family Fund help families living in England, Northern Ireland, Scotland and Wales who are raising a disabled or seriously ill child or young person under the age of 17.

To apply you must show evidence of your entitlement to the following: Universal Credit, Child Tax Credit, Working Tax Credit, Income-based Jobseeker’s Allowance, Income Support, Incapacity Benefit, Employment Support Allowance, Housing Benefit and Pension Credit.

If you do not receive any of the above, you may be asked to provide further information to complete your application.

You must also have a permanent legal residency in the UK and have lived in the UK for six months.

The Family Fund are unable to help children and young people in local authority care, including those living with foster carers or where a statutory agency has a responsibility to pay for the item needed.

Family Fund: Eligibility Criteria

To meet the Family Fund’s disability criteria, children and young people must have additional complex needs, or have a serious or life threatening illness.

There must be evidence that the child or young person’s additional needs impact on a family’s choices and their opportunity to enjoy ordinary life.

The degree of planning and support required to meet their needs must also be much greater than that usually required to meet the needs of children and young people.

They must also require a high level of support in three or more of the following areas:

  • The physical environment
  • Education
  • Communication
  • Access to social activities
  • Personal care, supervision and vigilance
  • Specialist resources, including Information and Communications Technology, required
  • Medical or therapeutic treatment and condition managemenet

The child or young person’s condition must be long-term or life limiting.

By, “long-term”, we mean lasting or likely to last more than 12 months.

Family Fund: How Do They Help?

The Family Fund can provide a wide range of items from washing machines to equipment needed for college age children, holiday vouchers to days out.

On occasions they are not able to fund the full cost of items requested.

Check out some of the families who have received help from the Family Fund on their website.

Family Fund: How Often Do They Help?

The Family Fund aim to will accept grant applications on an annual basis.

Family Fund: How to Apply?

Applications for a Family Fund grant can be made by the parent or carer of the disabled child or young person.

Young people aged 16 and 17 can make an application in their own right.

Applying for the first time?

Download the application forms and terms and conditions – complete the forms and send back the information requested.

To request an application pack visit the website here.

Applying again?

If you’ve been helped by the Family Fund previously, the letter you received confirming your Family Fund grant tells you when they can consider a further application.

This is usually 12 months from the date of your last grant but may be longer.

If you have applied before you may be able to register for an online account.

You will be asked to send and up to date household income confirmation so Family Fund can confirm you still meet their income criteria.

Family Fund: What To Expect After You Apply

Once the Family Fund has received your application they will check that it meets their eligibility criteria.

They may arrange for a home visit or telephone assessment from an Independent Assessor.

All applications are looked at in date order.

It takes 3 to 4 months depending on the volumes of applications and funding available at any particular time.

The Communication Diary: Let’s Talk…

Even though I’m now used to Hannah being away from me – having attended school, nursery and after having a couple of overnight (gulp!) respite weekends, my heart is still a little heavy when I wave goodbye to her.

I’ll let you into a little secret though…sometimes I also breathe a huge sigh of relief!  *hangs head in shame at confession*

Only because that means I get time to do the things I really need to do – like stand motionless in the middle of the room and stare in utter bewilderment at the plethora of abandoned toys and sticky finger marks and just general chaos that Hannah leaves in her wake as she exits Broccoli HQ…or just go and lie down for an hour…or two…just to recharge my batteries.

Even if I scrubbed the house from top to bottom until my fingers bled, no matter how hard I work to keep it clean and relatively tidy, the house STILL looks like a bombs dropped on it…why IS that?

I give up. Anyway, sorry, I digress…I almost got a bit carried away on a (fabricated) moanfest about housework then…  (Actually, I AM overwhelmingly grateful of the sticky fingers and the chaos and all the other stuff…long story, but according to the medical profession, I was never supposed to have a child – so I celebrate mess…I delight in it…I positively wallow in the utter disarray that is my life)

Let’s get back to the being at school (or just generally away from me) thing:

Will she be safe?

Will she have fun?

Will she stuff something in her mouth that she shouldn’t?

Will she catch bugs?

Could I possibly miss out on that first word spoken?

Will she concentrate on something/anything? I wonder.

I’d SO love to be a fly on the wall.

The feedback from her school annual review suggests that she’s quite a character….and I can believe it! I wouldn’t be surprised if the staff are all exhausted at the end of each day either.

Hannah is an ‘active learner’ i.e. she’s on the go and mooching around inquisitively from the second she wakes, to when her head touches the pillow in the evening.

I’m not complaining though…but it can be a tad draining sometimes having to be persistently vigilant and alert to every potential danger.

That’s probably the reason why I constantly appear shell shocked/frazzled/wiped out and insipid! Still, running around after the child is great for weight loss!…we always try to look on the bright side here at Broccoli HQ.

I’d have loved to have seen her when she went away on respite:  being yanked up trees, abseiling, canoeing, archery! (no eyes – hers or anyone else’s were lost, thankfully!) and having fun with her friends.

But what really saddens me, is that on her return home, she can’t tell me anything at all about her day…what fun she’s had, who she isn’t friends with anymore (well, at least until she sees them again!) or what she might have learned.

For those of you not familiar with my daughter, Hannah is non-verbal and has significant global developmental delay, so I’ve no idea what’s happened once I’ve left her in the care of others.

That’s why (and here’s where I FINALLY get to the point of this post) communications diaries are incredibly beneficial.

Most of the time, they’re absolutely brilliant:  they provide me with a brief idea of what Hannah might have done during the day, what she’s eaten, what kind of mood she’s been in.

if she’s had a snooze/slept through in the night and (importantly) whether she’s done a ‘number 2’….I’ve learned that ‘poo’ often dominates many a conversation within the special needs parenting community!…well, at least it does here at Broccoli HQ.

I can also reciprocate by sharing information on how she’s been at home, whether she’s slept well or anything else for that matter.

However, when a communications diary isn’t completed, that’s a whole different ball game.

I can pretty much guarantee that on Hannah’s return home, she’ll not be her usual perky self or something will crop up where I need to enquire as to what’s happened whilst she’s been away from me, but I can’t, because no-one’s contactable right then and there.

I think the appropriate term for that is “sod’s law”.

Take ‘The Grand Tale of The Glitter Poo Debacle’, for instance – long story, and noted in a previous blog post of mine (go check it out…it’s quite funny, even though I do say so myself…but it SO wasn’t at the time).  Hannah couldn’t tell me what had happened, there was nothing in her book to warn me to expect a ‘surprise’.  It all came as a bit of a shock.

On another evening, a mad dash to the GP’s was required as Hannah was decidedly unwell and I just couldn’t fathom out what was the matter.  My psychic powers had failed me and she couldn’t tell me what was wrong.

I felt a little useless speaking to the GP as I couldn’t tell them what she’d eaten (or consumed something harmful), if she’d come into contact with something, if she’d hurt herself or whatever.

Anyway, turns out it was probably just a virus that had been doing the rounds.  Phew!

So I can’t stress enough how important it is to have a model of effective communication between parents and professionals – especially when you have a non-verbal child. Otherwise, it can cause all sorts of bother and angst.

I (honestly) don’t ask for much…just a few brief lines to keep me in the loop…or even a quick phone call – I’m not fussy.

So, lovely professionals of the world…I totally appreciate that sometimes you have very little time in the day left to complete your diaries…but please spare a thought for us parents who will be anxiously awaiting your message on their child’s return home….and I promise (Brownie and Guides honour) to keep filling in my bit too!

My name may now be on the ‘over-anxious mummy list’, but I’m just trying to do what I’m supposed to do:  look out for my kid.

My wonderful, precious little girl.

Don’t Say it Unless You Mean It:  Special Needs Parenting

“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.”

One for the Special Needs Dads…

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!

For Better or Worse (in praise of Loulou’s Daddy)

Our early relationship was spent as a continuation of our student years with lots of nights out, takeaways and little by way of seriousness.

How times change!

Now married with two children and one of them being Loulou, I’m more certain than ever that I made the right match.

Neither of us could have ever predicted how things have turned out and I’m so lucky to have him in my life.

When I’m tired and Loulou is awake in the middle of the night or won’t settle in the evening, he is there for me.

When I’m stressed about changing seizure patterns or feeding difficulties, he is there for me.

When I’m in need of a break from the girls, he is there for me (quite often the minute he walks in from work).

He can control Loulou’s hands far better than me and it’s lovely to see her relaxed and cuddled into her Daddy as he settles her to sleep at night.

We’re a team.

When one of us gets down, the other one is there to pick us up. If one of us forgets to give a particular medicine on time, then the other will remember. As Loulou gets heavier, the ability to lift her together is crucial. We fret and worry together, debate potential diagnoses together, agree strategies together and still, most importantly, we laugh together.

I’m lucky to be his wife and feel lucky every day for my girls that he is their Daddy.

So Happy Father’s Day to Loulou’s Daddy. I love you and our imperfectly perfect family xx

Why I Love My Father: A Special Needs Father’s Day Tribute

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.

GoTo Shop Campaign

Dear Store Manager,

I really struggle with both the standard and disability trolleys that are available in most supermarkets.

Neither provides Daniel with the trunk support he needs.

It is also impossible for me to lift him in to a standard trolley, as he’s just too heavy and tall now.

This leaves me with very few options; doing my weekly shopping online, leaving Daniel at home while I go shopping, or settling for buying what I can carry as I push his wheelchair.

If doing the weekly shopping is also a challenge for your family, then you will be interested in hearing about the GoTo Shop Trolley!

The GoTo Shop is an adapted trolley for children with special needs that provides extra postural support and a secure five-point harness.

It has been a huge success with parents who have tried it, but unfortunately only one of the major supermarkets currently uses it – Sainsbury’s.

If like me, you would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

It would be amazing if you could add your name to these flyers and hand them in to your local supermarket managers.

That’s all.

Let’s raise awareness of the challenges we face in our daily lives as special needs parents.

By showing how simple solutions can make a huge difference to families like ours we can encourage our supermarkets to provide GoTo Shop Trolleys.

Help make your voice heard.

Our goal is to have a GoTo Shop Trolley in every supermarket across the UK and Ireland serving the special needs community.

Yours,

Claire

PS. Email, Tweet or Facebook us photos of you handing in the leaflet at your local store!

For more information visit here.

Learning To Ask For Help: Special Needs Parenting

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.