Often the words, “Special Needs” are overshadowed with negative thoughts, fear or sadness.

These were all my own thoughts in the early days on our journey when my four-year-old blue-eyed boy was handed his diagnosis.

I came to understand though that my child is not disabled he is differently abled.

My child is amazing because –  he is wise beyond his years, he offers some real gems of advice from his 10-year-old brain yet his autism makes him appear to have little or no common sense at times.

My child is amazing because – he can literally tell you every vehicle on the road, just by having a quick glance at their logo.

Then launch into a tirade of comparisons between the top sports or electric vehicles currently on the market.

I often feel left out as the outnumbered girl in the house of car fanatics.

My child is amazing because – he will not be fooled if you try and switch his brand of chicken breast pieced from Morrisons to Sainsburys and knows when the chocolate spread is not Nutella.

My child is amazing because – After so long avoiding leaving the house and going to places for fear of meltdown or people glares – will now ask me the star rating of a mini-break, if the log cabin has a hot tub or if the villa has its own pool!

My child is amazing because – he tries, oh boy does he try.

He will conform, he will do EVERYTHING you ask of him, no matter how unsure.

He will try EVERYTHING once, yes this was not always the case but as he has grown older and in confidence, we do push his boundaries and he trusts us that it will be ok, that we would never make him do anything too uncomfortable.

He knows that when I say, “trust me, just try and if you’re not keen then you don’t have to do/try/experience that again” – that I mean this and he is safe!

My child is amazing because – he loves!

With no limits or judgement, he wholeheartedly, devotingly loves and wants me to know this.

He can tell me literally more than 20 times a day how much he loves me and when you consider were away from each other between the hours of 8-5 that’s a whole lotta love exchange crammed into the morning and evenings.

My child is amazing because -he taught me how to love and how to live, how to be non-judgemental.

Made me feel that I could help others by sharing the highs and lows of our ASD journey – a raw and unedited point of view.

My child is amazing because –  From the minute those two pink lines appeared on that pregnancy stick all those years ago now – I knew that he was boy and I knew that it was going to be special.

I never could have imagined the journey we would take; the assessments, the meetings, the observations, the milestones that came after everyone else’.

The support with speech, the support with motor skills, the support with – well just about every aspect of everything.

But all said and done – My child is amazing because – he is mine!

Being a parent of any child is hard but being a parent of a child with special needs is sometimes harder.

Especially when you have more than one child and the other children don’t require as much attention as the child with special needs.

The only time I have trouble trying to balance out time is when my son is admitted into the hospital.

Because that’s when I can’t be there for our other two children. Which is when I feel my worst.

It makes me feel as though I’m a bad parent because they all need me but thankfully our girls understand that sometimes their brother needs us more.

When Jaylen is well, we are always busy doing something. And it’s always something that the whole family can do.

Our girls love including their brother in any and everything even when we’re just doing things at home.

We also try to do things with them that doesn’t include Jaylen because we don’t want them to think that they must settle for things because its what’s best for him.

So sometimes I or their Dad will take them to the nail salon or to this museum they love that Jaylen absolutely hate.

When we’re on vacation my husband will sit in the room with Jaylen while I take the girls different places that’s either not accessible or things Jaylen show no interest in.

For the most part, everything we do everyone seems to like (but me).

Our favorite place to go is anywhere that have rides. Jaylen love rides and doesn’t seem to be afraid of anything.

Our girls also enjoy rides to so it’s always a win-win situation.

As far as the home it gets hard because Jaylen demand attention from everyone.

So, most of the time when we’re home its everybody with Jaylen.

If anything needs to be done with the girls I usually do it because Jaylen prefers his Daddy over me.

So, our family basically enjoy being around each other and doing something that everyone can do.

Balancing time isn’t really an issue unless Jaylen is in the hospital or were home.

My two boys make my days super busy – my days are filled with daily care, appointments, phone calls, meetings as well as trying to do fun things and keeping my boys both happy.

But my two boys are my superheroes – they amaze me every day.

Here are five things that make them totally awesome:

1. They both have a wicked sense of humour; my boys make me laugh every day.

They use humour in lots of different situations – whether it’s telling me something about their day or just their little expressions when we’re meant to be dealing with something serious.

Their funny humour gets me through the hard days.

2. They have a fighting spirit: my boys are both different and they know it. But they don’t let anything hold them back, they never give up and they try their best with everything they do.

They both face different challenges but they both fight thru the everyday to achieve all they can.

3. They tell it like it is; my boys have the ability to just tell the truth.

They will tell you when they’ve had enough of your company, they will tell you if you’re not looking your best, they will tell you if they don’t like something and I admire them for it because you know exactly where you stand with them.

You don’t have to work them out – they’ll just say what they think.

4. They have amazing abilities; one of my boys is like a human calculator and he blows my mind with his crazy number skills.

He remembers amazing facts and figures and likes to report them back to me.

My other son is brilliant with words and for a three-year-old, he always knows the right thing to say to cheer someone up or to make people happy.

He tells me incredible stories that he’s thought up and with him, by my side, it’s never quiet for long.

5. They accept each other; my boys have very different needs and yet they seem to just understand each other so well.

Of course, they have their moments like any other brothers but when they work together they really are an awesome team.

So my boys are my superheroes and I admire them for all that they are –they are amazing and they make my every day happy.

As I look down at my cellphone, I am reminded of the multitude of voicemails I have yet to return.

There is an abundance of texts in my inbox still marked unread.

I’ve posted on Facebook today, but have neglected to respond to the event invites awaiting my response.

In the past, I was on-point at responding to friends and loved ones in a timely manner; you could always count on me.

However, in the years since being assigned the role of Special Needs Mom, my dependability in the area of friendship has sharply declined.

It’s different than when I became a mother for the first time.

Sure, my ability to be a present friend suffered at that point in my life, but the world understands that.

People can EMPATHIZE with how life is suddenly turned upside down and schedules and routines become most important for the new mom.

After a while, I found time to devote to friendships again; I rebounded and recovered from being a crummy friend.

Today, with two amazing children, and one having profound disabilities, my time is more precious than ever.

My capability of being a good friend has hit an all-time low.  I am a terrible one.

I know I was supposed to return your call on Monday, and it’s now Wednesday… I’m still wondering when I will find the time.

I do sincerely appreciate your dinner invite, but I need to feed my eight-year old daughter at 5:00 PM.

I’m letting her practice feeding herself now with her spoon, therefore, we’ll still be sat at the kitchen table until bath time at 6:00.

Bath time is cherished by us both; I love watching her splash and I allow her to relax and soak in lavender, for as long as she wants.

After that, it’s medicine time (again), followed by our treasured snuggle time.

She wants me to read “I am a Unicorn” to her before bed, several times, and I am delighted to do so.

Her sleep schedule is vital; putting her to bed is quite similar to putting a baby to bed.

I spend time patting her back and playing her soft lullabies.  Before I walk out of her room, I turn on her pulse oximeter monitor and hope that she’ll get a restful night of sleep.

Afterward, I also want to spend some time listening to my wonderful son practice guitar and hear him explain the premise of the new YouTube video he’s creating.

We also need to recap the online homeschool lessons he completed today, and what tomorrow has in store.

By 8:00, I could return a phone call, but instead, I want to eat dinner with my incredible husband and catch up on his day.

He listens patiently as I tell him about the scathing e-mails I’ve sent to our medical equipment company today and how I’m worried that our daughter’s seizure medication is making her stim too much.

He is actively and supportively attentive as I tell him about a speech therapy center, an hour away, that I think is worth checking into for our nonverbal girl.

All the while, we’re eating our dinner that’s long gotten cold, and I finally manage to inquire about his hectic, busy day at work.

Eventually 9:00 rolls around and I could shoot you a quick text message, but instead, I just want to lose myself in mindless TV comedy and laugh with my spouse.

“I’ll get back to you tomorrow”, I think to myself.

But then tomorrow comes, and I remember we have an appointment with our case manager, and I need to spend ample time preparing for that.

It’s not that parents of children with special needs intentionally withdraw from friendships or purposefully turn our backs on those important people in our lives.

We still love you; we still care intensely about what’s going on in your lives.

We are just insanely preoccupied with little ones that we love fiercely; our children that mean more than ANYTHING else in the world to us.

We’re caregivers and the ones in our care require and deserve ALL that we’ve got.

Sometimes, at the end of the day, there’s just no energy left for anything else.

In my case, I genuinely want you to continue inviting me to your girls’ nights and your dinner parties; we both know that I’ll likely decline.  But someday, I will show up.

Just knowing that you still think of parents like us from time to time means a lot.

We’ll make time, eventually, to get away for a bit.  Remember that, and don’t give up on us.

We do love it when you meet us halfway, too.

When my sister or a dear friend pops over to my house for coffee and a chat, it’s always refreshing and very appreciated.

Being a good friend takes a considerable amount of work.  Being a GREAT mom takes even more.

I still kiss my son goodnight. I think most mums of ten-year-olds still do that, don’t they? Is it age appropriate?

I honestly have no idea because I, most likely, will be kissing my son before bed for the rest of his life.

He won’t ever be embarrassed by it either because while his body ages his mind will always be that of a toddler at most.

And therein lies a huge dilemma as a parent of a child with significant cognitive impairment: what do I do with the whole issue of age appropriateness?

It’s so tricky.

I’m still doing intimate care on my son. Someone has to do it but finding an appropriate place is very tricky now he’s the same height as me.

While it really isn’t anyone’s business why I still have to enter bathrooms with him I admit it looks increasingly awkward for people as he becomes ever close to my height, thinks nothing of giving me a body hug in public and he’s reaching puberty quicker than I can blink.

While most preteens seek out more and more independence, he needs me closer more than he ever did before.

Since epilepsy joined his long list of diagnoses being out of sight has proven too greater risk for either of us.

Then there bathing. At an age when he should be washing his own hair, thinking about deodorant and aware of his self-image he still needs me to run a bath, wash his hair, clean his body and dry and dress him.

Simple age appropriate things like privacy and dignity are words he likely won’t ever understand let alone request.

It’s not really appropriate age wise for me to do what I do for him but then how would he ever get clean if I didn’t do it?

He still wants to do what younger children do. That’s becoming increasingly awkward too.

He can’t balance or climb on the play equipment in the park designed for children five and over so he climbs and crawls on slides which are barely the height of him and are built for toddlers.

Cognitively and socially he’s the right age but physically he’s 9 years too big.

He would still like to sit in a safety swing designed for babies but his body won’t allow that.

Unless there is a seat delighted for children with physical disabilities then going on a swing is impossible as age appropriate swings require him to hold on and self-support, two basic physical skills he’s yet to master.

He loves soft play but it’s difficult to keep him out of the baby and toddler areas and signs mean nothing since he can’t read his own name never mind instructions.

There are no playing outside in our world, or sleepovers, or theme park trips.

There’s no watching his football team play, x boxes or cinema trips. There aren’t even birthday parties, Lego building or pocket money.

On the surface, nothing seems very age appropriate in any way.

Yet just because my son is disabled doesn’t mean I baby him or that he can’t experience anything typical of a ten-year-old.

As he’s growing and maturing it’s important that I grow and mature in the way I parent him too.

So, whilst he won’t suddenly start asking for a mobile phone, taking selfies or demanding the latest trend in sportswear he definitely deserves the same respect, privacy, and choice of any other ten-year-old.

My son can make basic choices and I respect his answers.

If I take him to a clothes shop and give him the choice between two pairs of trousers he can and should be allowed to choose the pair he wants.

If we are out and he needs his personal needs met then he can decide whether to come with me into the ladies or use the disabled bathroom.

After swimming, I encourage him to hold a towel over himself for privacy even if he has no idea what this means.

He’s growing and becoming a teenager which is tricky for any child but so much trickier when your child is disabled.

Navigating the waters of age appropriateness with a ten-year-old whose choice of YouTube videos includes Peppa Pig and Bing Bunny and who still thinks he can fit in a toddler coupe car is proving quite a learning experience for us both.

I’d love to know how everyone else goes about their holidays and what they get up to with the extra time.

Don’t get me wrong – I love that we get more time to spend together, and I also love not having to get up early enough to be fully ready and packed for school by 07:45 each day.

But wow it’s hard!!

I have found myself several times recently, telling people that I wish I could clone myself!

My poor mum broke her knee over the weekend, it was actually quite gory and very worrying. Like any grown-up daughter, I immediately wanted to be there. I want to be there now.

Helping make meals, helping with chores, generally keeping her company whilst she’s relatively immobile. But it hasn’t been as easy as I’d expect.

I rearranged our orthotics appointment for the second time, had to cancel a medicine trial that required us to be in the hospital, and generally abandoned all jobs.

I don’t care about missing those things, the important thing is that my mum is okay.

But it makes me sad that because my child has such complex needs and such a busy life that I can’t always just drop everything.

It’s not the mum breaking her knee thing though, I mean about any unexpected thing that happens in life.

I feel that I can’t afford to get ill ever. I feel like when it’s school holidays you somehow have to double your capacity to get things done.

When trying to help, people say things like “well, jobs can wait”

But actually, a lot of our jobs as SN parents can’t wait.

I can’t just not change dirty bedding (daily job), I can’t not clean syringes and draw medicines, I can’t not spend my time placing orders for feeding supplies, booking appointments for wheelchair adjustments, booking shower chair services, planning for our next check up at a far away hospital, filling out forms for grants we need and so on. You get the gist.

It’s full on. All of the time. It is unrelenting.

I do it because I have to. And because I care. But do I think my work load is too much for one person?

Yes!

The holidays for us generally start out quite well. I throw myself into it full pelt, determined that we make lots of great memories and that I keep her busy.

I want to be able to tell the school about all of the lovely days out we had.

But usually part way through the first week, the burn out starts to set in. I start to get behind on dishes, washing, I get a bit lazier and clumsier.

I become more reliant on YouTube. I start to falter in my planning and start to cancel on people because I’m having a wobble physically and emotionally.

It feels like an internal mental battle.

Part of me going “come on, you got this. She needs you, and you want to have fun don’t you? Forget the chores” but then the other side of me is crying out “slow down woman, you are only one person, there is only so much you can do and you can’t give 100%, 100% of the time.”

During term time I am just about coping and keeping up. There are still nights of no sleep, of medical intervention, of heavy lifting and awkward dressing.

But the difference is I can slow down a bit in the day as I catch up on essential jobs.

Today is a school day and already I’ve struggled hugely to get motivated.

Yesterday was quite a full-on day for me and my family and we also got a terrible nights sleep!

By midday today I forced myself to the shops, walked the dog, emailed a nurse about PEG ends, did some clothes washing, oh and broke our slow cooker pot (oops).

Normally by now, I would have done way more than that, but today it just couldn’t happen.

This time next week those jobs will still be there.

But thrown into the mix will be my amazing but also very expectant and demanding daughter!

You never know which Amy you will get from day to day. Some days she is happy to accept that mummy needs to get things done, and she’s happy to go to the pharmacy and shops.

Other days no. She wants my 110% attention.

Sadly there is no independent play for Amy. She needs me there all of the time to help choose toys and to help her operate them.

We have a great time doing it but I can’t do it for 10 hours a day!!

Recently she’s started to really enjoy using her goto seat on the floor of her bedroom as she can reach out for all of her toys instead of just eye pointing (as seen in the picture!)

So I turn to indoor shopping centres, or wheelchair friendly park trips… but those things are tiring, and without getting too political and angry about it – places simply do not have the facilities to change children like ours.

Some do, but often those places are further from home and therefore involve further planning, packing, travelling, and anxiety.

An easy option that I wish worked would be the cinema. But she hates it! We have tried live shows too with little success.

I am hoping as she gets older she starts to expand on what interests her.

One thing she recently learned to love was gardening. I never in a million years would have expected it. At weekends we often go to garden centres and her great auntie joins us in smelling nice plants and looking at pretty flowers.

For Mother’s Day, her and daddy had a lovely time planting some flowers for me.

She also made a secret garden at school this week and when she was showing it to me she somehow managed to uproot some pansies and launch them and soil all across the room. It was so funny.

I think this holiday I will have to try and pace myself.

I will have to focus on only jobs I HAVE to do, I guess sometimes, some things can wait.

I will need to lower my expectations of myself – it’s okay to not be perfect all of the time.

I will have to be more patient with my daughter and with myself – she gets frustrated and deserves more of my time.

I need to make sure I don’t overplan, because epilepsy and illness don’t care for my plans.

I need to accept that part of Amy’s neurological status, that there will be uncontrolled emotions, and crying, and seizures. I can’t always fix what’s wrong, I just need to be there.

I definitely would like a zoo trip. She enjoyed it last time, and one of our local(ish) zoos has amazing facilities.

There is also this amazing place near us called Reubens’s Retreat and they run events for families like ours, this week Amy is going to a music therapy group with her respite carers.

I am very excited for her (and also planning to rest up for the weeks ahead!).

I am also very excited that Amy’s cousins are visiting from London and she hasn’t seen them since she was tiny.

So we have a lot to look forward to, and I need to keep reminding myself of this and to keep positive.

I don’t want to spend a lot of my time wasting time to get to bed time because I’m tired, I want to enjoy life with my family in spite of the extra challenges thrown our way and make memories.