15 New Years Resolutions for the Special Needs Parent

1) I will try to get some fresh air everyday.

2) I will allow treating providers and therapists to have less of an impact on my emotions and will not take their lack of confidence in my child to heart.

3) I will spend one day a week in my pajamas and not feel an ounce guilty about it.

4) I will search out new avenues of support and assistance and focus less on the dead-ends knowing something good will come through a new door.

5) I will organize and go through old paperwork and purge documents that are no longer necessary or relevant to my child’s care.

6) I will re-evaluate my child’s team and decide if a new doctor, therapist, care provider, durable medical equipment provider or specialist needs to be replaced.

7) I will be gentle with myself and be less critical if I can’t get it all done in a day.

8) I will treat myself to a time-out.  Maybe that means I’ll paint my nails, read a book for 15 minutes, or sit down and finish a cup of coffee.

9) I will only check Web MD once monthly and not try to diagnosis new symptoms online.

10) I will work on quick comebacks for the insensitive comments that others say about my child with special needs.

11) I will find more joy than sadness even during the really hard and difficult times like insurance denials and government benefit battles.

12) I will do my best to accept invitations to get out into the community even if that means joining a friend for a cup of coffee.

13) I will not invest my time and energy to get family members and friends to accept our situation and will cling to those who already understand.

14) I will insist on second opinions about negative news and verdicts about my child’s health.

15) I will designate one day a week to no therapies, appointments or schedules to allow our family to enjoy each other’s company privately.

Nativity: I Wasn’t Prepared for Mary’s Lessons

The soppy films we watch whilst writing cards to dear and distant friends, the stress of the ever-swelling lists of festive chores, anxiety over trying to keep our children out of hospital at a time when school becomes a, ‘viral soup’, and calming over-excited little ones whose routines have been replaced with tinsel.

I become introverted and pensive too as I remember Natalia’s birth at the beginning of December.

The excitement of celebrating her birthday is mixed with recollections of the shock we felt hearing the unexpected news that she has Down’s syndrome, I remember the worry as we sat by her side in NICU waiting to hear more about her heart condition, and I re-live the first time we nervously brought her home to join our family on Christmas eve, vulnerable and dominated by frightening tubes and monitors.

I desperately wish I could re-live those early days, knowing what we know now, but instead I remind myself of how far we have come while we make paper chains and gingerbread houses and wrap gifts to festive tunes on a loop.

Set the Nativity Scene

If none of that exhaustion reduces you to tears, then the school/church/nursery Nativity play is sure to set you off.

There really is nothing like little ones performing the best-loved Christmas story, their tiny voices repeating well-rehearsed lines or holding stars aloft, heads clad in granny’s cleanest tea towel while an audience of proud family strain to see/hear and capture the all important phone footage.

Being in a Nativity play is a rite of passage for many isn’t it, a shared experience we can all relate to.

And of course the moments where it doesn’t go to plan; the nose-picking, a child shouting her lines or a sheep poking her tongue out at a shepherd are the comedy moments that will be remembered forever.

Our Little Star

So three years ago when Natty came home from school clutching a slip of paper announcing that she was to be Mary in her class Nativity the tears of pride immediately sprang forth as we scooped her up into a family group hug.

Not a big speaking role with lots of tricky lines to learn, but one which nonetheless allowed our confident little attention-seeker to be centre stage and cradle a favourite doll.

The part seemed perfect.

It was all very exciting, yet I was blissfully ignorant of the emotional tsunami to come, as we rehearsed and created costumes in the weeks leading up to the big event.

Realisations You Weren’t Expecting

The evening dawned.

We arrived early enough to numb our bottoms on wooden pews near the front. I began to feel nervous.

Nervous of whether Natty would enjoy herself, nervous about what other parents would say about her being cast as Mary, nervous about whether she would remember her lines or even agree to take part at all.

My eyes pricked and I reached into my bag to wrap my fingers around the embroidered handkerchief that I had to wait until the play at least started before using.

And the light dimmed.

The biblical characters filed in to, ‘Ooohs!’ and, ‘Aaaaahs’.

My husband nudged me as she walked past, beaming from ear to ear and rubbing her, ‘bad back’, whilst hobbling down the aisle with a pillow strapped around her middle and a fake facial expression of strain unique to heavily pregnant women.

And that was the moment my curbed tears gave way to full silent sobs.

There, in that second came a realisation that I wasn’t expecting. And it hit me hard.

Because seeing Natty up there on stage, playing the most famous and gentle mother of all mothers, the Virgin Mary, lovingly holding the symbolic baby Jesus in her arms was a very powerful and graphic reminder that our youngest daughter is unlikely to ever become a mother herself.

All at once I began questioning that if she was physically able, would it be in her best interests emotionally.

Without setting limits, I guess we hope that becoming independent and being able to look after herself with support is our ultimate aim.

The chest-deep sobs came from some primeval place within my soul, a place that the head cannot rule over however logically you try to reason it out.

I became cross with myself that it mattered so much whether she would bring us grandchildren. I was again giving myself a pep talk about accepting each of our children for exactly who they are.

Acceptance and Appreciation

Now, Natty’s self-appointed ‘fairy Godmothers’ don’t have any children. Her second Cousin doesn’t have any offspring and one of my dearest friends cannot bear the thought of reproducing.

But for all these women it is a lifestyle choice, a decision they have reached.

Having children isn’t the be all and end all in life, but if you want them and are denied that privilege it takes a lot of soul-searching to come to terms with that fact.

It’s a loss, an empty void that is hard to fill.

And one day we may have to have that heart-breaking conversation with Natty.

We might have to explain to a young woman who loves babies, that she cannot become a mother, as her elder sister is likely to.

I’m certain she will fill her life in other ways, maybe get a job in childcare, be a fantastic aunt, or maybe it will never cross her mind to be a parent and I’m overthinking the whole thing.

It’s all a long way off and I don’t know any of the answers yet.

I’m sure when the time comes we will follow whichever path stretches out before us.

And for now I’ll take a leaf out of Natty’s book. I will try to just live in the festive moment.

Happy Christmas from us all at family Downs Side Up.

Glen Scrivener’s Nativity film features actors and narrator with Down’s syndrome. Watch He Came Down here.

Age is but a Number

I’ve seen so many positive and helpful posts are out there, it makes the internet a rather wonderful place for people like us and helps us all share ideas.

I love it. Solidarity and all.

I got added recently to a group about sensory ideas for Christmas too and there are some great suggestions and examples on how to maximise all lighting and tactile opportunities.

The fact these groups exist and that so many members are a part of those groups shows to me that, “normal”, does not exist.

Different things work for different families and whilst we might all have some things in common, there are things specific to just our children.

With that in mind, it started to annoy me recently the age recommendations they add onto toys.

Obviously I understand the safety precaution ones about small parts and so on, but even then it would be better if it just warned of small parts – some of our children over the age of 3 do not know the dangers of small objects and wouldn’t think twice before consuming and ingesting them.

Though I suppose as parents we have adapted to ignore the labels on toys and choose what is and isn’t appropriate for our child. Personally  though – I don’t care if she still loves toys like this when she’s 50.

As long as she is happy.

That’s what it’s all about.

I have seen parents claim that pound shop dog toys are ideal for their child as they like to mouth things and these toys are much more durable than the toys you get for children.

I’ve seen people use Christmas decorations like beads and tinsel as a prop for tactile play and visual impairment therapy.

I’ve seen people turn a clothes rail into a pole for hanging toys on so their child can independently hit the toys whilst in their wheelchair.

Special needs parents are truly some of the most innovative people I’ve ever met. Always trying to see the world through their child’s eyes and find a way to sooth and please them.

A toy Amy recently received says age 6 months to 24 months. She is almost 36 months, a whole year older than their recommended age.

Thank you for highlighting to me the cognitive delay my child has and slightly alienating us.

On a bad day, this is the sort of thing that might upset me. I would wish these big companies stop and recognise that there is a big market for switch adapted toys, though I have noticed a few disability companies have started to adapt mainstream toys.

On a good day like today I think, “HA! My child can enjoy whatever she wants.”

If she likes it… it is therefore age appropriate for her.

This doesn’t mean I don’t challenge her or show her things a child her age might typically like… But I am finding a lot of the older kids toys are figurines and things that require fine motor skills and imaginative play.

Sometimes she will look at them and we will try to play with them, but she is a little girl who wants to be in control.

She doesn’t always want to sit and watch, she wants to be doing it herself.

One of Amy’s most recent developments is helping turn the pages on her electronic books. It fills me with so much excitement every time when I see her hand move to indicate she wants to turn the page.

Not just that she is focusing on turning the page, but that she knows this page is finished and wants to look at the next one.

Toys for us are a great way for her to express that actually, I am bored of this now… I need something more interesting.

It helps her motor skills, her communication, it helps relieve sensory issues and anxiety, it helps her regulate her movements. It is how she shows her likes and dislikes and it gives her a voice.

In some ways, the way she has overcome the limitations her body has set on her and found other ways to show preference.. to me this renders her just as if not more intelligent than her peers.

Her knack for problem solving is incredible to me.

This is a skill I could only dream of her developing in the past, to see her actually doing it is so good.

This year she will receiving mainly electronic books and toys (and lots of spare batteries!)… this is what she loves, this is what helps her thrive, this is what helps her remain in control.

The age does. Not. Matter.

I for one am 30 next year and I love nothing more than a nice teddy bear, or some of the same cartoons I enjoyed 20 years ago.In some ways none of us ever grow up, this is what I love about Christmas.

It is an opportunity to relive your childhood but through the eyes of your child; and if it so happens that you do that slightly differently to what you expected… that’s just beautiful too.

I wonder a year from now how Christmas will be.

Will it be electronic toys still?

Who knows.

Wishing you all an amazing time with the ones who matter most.

Toys, Toys and More Toys!

And its not the usual SEN one of, ‘What to buy my child that will be suitable for his developmental rather than chronological age?’ – it’s the opposite.

You see, this year there is another little person to consider – my niece now has a little step-brother.

And he is *gorgeous*. And 2 years old.

You’d think, wouldn’t you, after years of buying toys for Sam that meet the developmental needs of a child who’s skills are far delayed that buying a present for a developmentally normal toddler would be easy wouldn’t you?!

Ohhh no. I don’t have the first clue what a ‘typical’ 2 year old wants or likes.

Sam doesn’t have any great interests in childrens TV characters, so I’ve never had to negotiate the minefield of In the Night Garden, Tweenies, Teacup Travels, etc., in the toy aisles… I have had to resort to quizzing my Mum over what things the little chap likes, and have finally settled on a sing-along song book with CD.

And the ever essential (according to my niece) selection box of chocolate bars.

And for the first time, ever, I haven’t felt such a strong pang of sadness that my little boy doesn’t have any interest in the toys his age-matched peers will be getting this year.

Sams development is slow but it is HAPPENING.

So for the first year, I haven’t had to lurk in the baby toy aisle looking for a toy he doesn’t already have, because he can now play with *other* toys!

Sam loves being read to, so brightly coloured books are a must.

And to my deep joy I spotted a set of Dr Seuss flash cards in the Works, the ones you use to teach children shapes, words and colours!

Sam adores the Dr Seuss books for the fabulous rhymes and silly words, so that’s a winner right there.

We can also now look at the range of switch adapted toys, or at battery powered toys that can be modified to accept a switch.

This year feels a lot brighter than previous years I think I may also be reaching a point of acceptance too, instead of railing against the reality of things I’m learning to embrace them; easier said than done at times.

Now, if you’ll excuse me, I have some books to wrap…


Notably, the mention of Santa in his presence causes him to fix his gaze on the speaker no sooner than the word is out of their mouth!

For me, this is just the best present imaginable – I love Christmas, and certainly after this past year where so many I care about how lost those they love it seems even more important than usual to take time out to cherish my family and friends.

I cannot wait to take time off work over the Christmas period to just soak up the joy of seeing my little boy excited and starting to experience the wonder and magic of Christmas.

I’m Christian, so for me the season has a very deep and important meaning far beyond just the mountains of presents (I may have gotten a tad carried away this year), food and decorations.

I want to keep the magic alive, for my boy, my niece, and for all the children we’ll see over the next few weeks (and yes, I include in that all the grown up children who still have a quick glance up to the sky on Christmas night… you know who you are ).

There was once at time when we feared our little hero would never understand Christmas, and yet here he is, almost 6 years old, eyes sparkling as we read him the Christmas story.

Next week I’ve managed to book a precious day off work to go and see him in his Christmas play at school, and I am infinitely more excited about this prospect than he is!

We don’t have many traditions in our family for Christmas, at least not yet.

I think we may have to develop a few.. so far most of our traditions seem to involve falling over tinsel that the cats have removed from the tree, or wrestling a bauble out of the dogs mouth before the toerag munches it to oblivion (shatter-proof does not equate to Merlin-proof).

This year family are coming to ours so Sam will have all his necessary bits and bobs easily to hand, even his hoist has been decorated in honour of the festive season.

Alongside all the excitement though I have a very deep heartache, as this will be the first year that my Dad won’t be with us… he’s still here, but not well enough to travel and is increasingly struggling with any change in routine etc as the dementia continues its relentless course.

It’s one of my big wishes for this Christmas, that he’ll be well enough for me to visit him with Sam at some point between Christmas and New year – he may not know who I am any more, but I know who he is.

As does Sam.

Christmas is all about love when you strip away all the tinsel and sparkle, so from my family to yours, Merry Christmas and may 2017 be wonderful

Special Needs Christmas: Hello, I’m Albert the Elf

Now, as a lot of you may know a few years ago Santa decided it would be a great idea to send some of us young elves out to mingle with the human children.

The idea was to learn from them, that they would teach us the true meaning of Christmas!

For us to see why it’s important for us to work so hard.

We are to move unseen while spreading Christmas happiness, maybe a few cheeky games – after all we are elves!

But I most definitely did not make flour angels or throw bread to the ducks in the bath..nope, nope not me!

I may possibly have wrapped the TV…

…Hahaha yeah that was funny.

The biggest rule we must follow is to not get touched or we lose our magic.

Five years ago I heard about this one family, one of the children is autistic and he would not be able to understand why we can’t be touched,  it would be distressing and confusing for him but I couldn’t ignore him, I couldn’t leave him out!

I’d watched this family and knew they needed some extra Christmas magic.

They deserved it.

I knew this boy and his brothers had so much to teach me, the purest hearts with magic shining in their eyes.

How can young minds be so understanding about things that I’ve seen adults struggle with?

They had the power to speak with no words…I was hooked – I had to be with them.

Speaking to the big jolly man himself he agreed I had to go to this family, Santa found a way but I can’t tell you how!

That’s a secret!

Five years on and these children still amaze me.

That boy still has no voice but I do hear him!

If someone can’t use a voice to say what’s inside,  it doesn’t mean that they have nothing to say, no it means we just have to listen a little deeper, take the time to help them release the magic from within.

You see if we look over a beach of pebbles, each one different yet each one smooth and shiny as the water washes over them.

Moving together, comforted by the understanding of the other pebbles.

Then hidden amongst the pebbles lay shells, different from the pebbles yet striking!

The water washes over them rippling through the shells groves, the shell gets caught by the waves sometimes putting it off balance, looking a little lost and different to the rest of the beach.

Then if you pick that shell up and place it to your ear listening carefully, you may just hear something truly beautiful.

If you have an elf at your house say, “hello,” from me.

Have a great Christmas everyone.

Love Albert x

4 things I’m Giving Up in the New Year as a Mom of a Child with Significant Needs

1. Doing Things the, “Right”, Way!

There will always be someone who thinks the way you do something isn’t “right.”

There will always be someone with a better idea or a different way to reach the same outcome.

As a parent of a child with significant needs I do what is best for my child and that may not be the best for another.

With my first son I was so worried about doing things the way others see as being the correct way, and this time around I have thrown that all out the window.

I am doing things my way, the best way I know how for my fragile son.

2. Worrying About What People Think of Me.

This will be harder to let go of for me personally.

I don’t particularly like it someone doesn’t like me.

But I’ve decided this doesn’t matter one bit.

What others think of me has no bearing on what I think of myself and how I do my job caring for our son.

I know I’m kind. I know I work incredibly hard to ensure our children’s needs are met.

And I know I’m a little crazy and controlling.

I know who I am and if other’s have a different perception of me I’m okay with that.

Having a medically fragile child will change your perspective and this is no longer important to me.

3. Surface Friendships

I don’t have very many friends, I think our life has made it difficult to keep friendships.

Making and keeping plans is not easy.

I have very little time anymore for small talk. I have little time for people who don’t really want to know about our lives.

I care deeply and invest a lot of my emotions into friendships, and as a mother who is constantly pulled in many directions, I have decided to give up trying to keep friendships that aren’t reciprocal.

I will focus on the friends I do have and build a stronger, deeper bond with those women.

4. Clutter and Mess.

Dishes in the sink.

Clothes to be dropped off for donation.

Toys. More toys.

Life is more important than what my house looks like.

It most definitely does not look like a magazine advertisement.

Actually, it looks like a family lives here. It’s most definitely lived in.

I know I will not remember or care what my house looked liked years from now, but what I will remember is spending time with our boys.

I want to soak up every moment I have with our complex son, and never take any second for granted. I want to memorize his smile and record his laugh; time isn’t guaranteed. Dishes can wait.

Having a child with significant needs has opened my eyes to a different world. Categorizing what is important to our family and what isn’t seems easier to do when your child’s future is unknown. I’m focusing on what really matters.

Happiness, love, and making memories.

Wishing you all the very best 2017.

Special Needs Christmas: But I Didn’t Ask for That!

We had mastered the one a day of the advent calendar; well almost, he had mine and Daddy’s too!!

I was really excited to have the family time at home off work and in addition to everything that my son had asked for I picked up some surprises along the way and couldn’t wait for Christmas morning.

Now I don’t know if any other ASD families are the same but Cameron doesn’t realise when those special days arrive, he’s the same with his birthday.

So Dad and I were awake in bed with a cup of coffee and the TV turned up a little loud to disturb him to wake him up as we were the excited kids.

Cameron woke up, went to the toilet and got back in bed.

I said good morning waiting for the realisation to come but it didn’t.

I said Baby what day is it today?”; that’s all it took, he came bounding in and asked could we go downstairs and see if Santa had been.

So he opened his presents; one by one, he was in amazement and so far everything had be exactly what he asked for UNTIL –  he got to a present that I’d picked up along the way thinking he would like it:
“Errmmmm Mum, what’s this? I didn’t ask for that.”

With that the present was discarded to the side, I was a little furious and looked at my husband who just shook his head.

Throughout the day Cameron received more presents and luckily when he had also told family members that he had not asked for their presents, they were not fazed.

I asked Cameron had he received everything he wanted and he said no, very matter of fact as many autistic children are – we all know as a parent that’s not easy to hear and I asked what was missing…

“A bike.” he said.

I used this as a learning opportunity and said to Cameron “Well baby you mustn’t have been good ALL of the year, there have been times when you have got into trouble and remember today you may have hurt people feelings telling them they got you presents you did not ask for!”

He said sorry but again reiterated that he hadn’t asked for those things and didn’t want them.

So another year on; preparation for Christmas 2015, the obligatory Christmas list is done and this year I stuck to the list.

Family asked what he wanted and I told them some of the items, and at the end of this Christmas day he said “It was the best Christmas ever mum – I got exactly everything I wanted”.

Victory, so much simpler!

Fast-forward to today – always one for a challenge, this year we are Christmas listless.

There has been no list and I have told Cameron that Santa has been listening to what he has been asking for but that he may get presents that are surprises that he may not have thought of.

I’ll let you know how this pans out, I suppose I’m just trying with each passing year as he gets older and starts to understand more to push his boundaries and help him face new challenges to prepare him for the future where he will be faced with many instances of satisfaction but also disappointment.

Christmas Night Outfit

It’s a magical time of year full of family traditions, decorations, and classic carols.

There are also the traditional Christmas pajamas!

Yes, that’s right, I love to see my kids in matching or coordinated Christmas pajamas on Christmas Eve.

I used to have a difficult time justifying the cost of two pair of pajamas that were specially purchased for one night of the year, but trust me- the kids will wear them until it’s either too hot for fleece holiday pants or they no longer fit.

Our daughter was definitely wearing hers in March of last year.

(No judgement please)

The sight of our son and daughter snuggled up together in their adorable pajamas is worth it to me, so here are a whole bunch of options if you want to make this part of your family’s Christmas tradition as well.

Or maybe you already do!

This is a great time of year to shop for your Christmas pajamas because all of the holiday sales are beginning online.  Some of the sites listed below have offers for 25%-30% off, or free shipping, so load those carts with jammies for all!

Old Navy has some really cute and reasonably priced holiday pajama options, and they are offering 30% off at the time of this post.

The discount offers will vary and continue until Christmas, so don’t worry if you miss the 30% off offer.

And the reindeer slippers – so cute!

GAP also has some slightly more expensive but equally adorable kids’ pajama choices.

They are offering 25% off at the time of this post, but as I mentioned above, the sales will continue so check for deals!

Target has some great holiday pajama options, and I especially like the Burt’s Bees organic sets.

Target is also offering a buy 1 get 1 50% off deal.

Gymboree’s patterns are darling this year, but my favorites are a matching plaid nightgown and pajama set!

And, because they are entirely too precious not to include, I have noticed an elf and santa 2-piece pajama set from Crazy8.

What a shame it would be to leave the grown-ups out of this fun Christmas Eve tradition!

I personally think the adult one-piece footie pajamas are a bit hideous (and my husband would second that).

But, should you desire your own pair of holiday pajamas, here are some cute options to have a think about.