Anyone else running low on ideas to entertain their kids? Not just me then?!

Weeks into lockdown with many more to go has meant that inspiration is decidedly lacking – Pinterest, already a favourite, is showing up on my browser history with alarming frequency and I am feeling distinctly inadequate as a crafter!

This week’s inspiration? Sock toys.

Sam had a great time going through his old socks, he was fascinated by how small some of them were (he was a tiny baby) and picked out a white sock with dark blue toe and heel, and stars printed on the rest for our first project. This is a lovely craft to do with children who can use their hands but kiddos like Sam who can’t can still join in. I had a bag of toy stuffing in the craft supplies, but old fabric scraps, old t-shirts or tights work well too and are washable.

We found the pattern in a book we already had but it was incredibly simple and all you need are a few very basic sewing skills. You can find loads of patters and ideas online, but we found that you don’t want to put too much stuffing in, you can easily manipulate the stuffing to give a neck portion, keeping a rounded head and rounded body, just by rolling the sock until you’re happy with the shape and can always add more as needed. As Sam’s sock had a coloured heel, we decided to wiggle some of the stuffing into the heel and create a nose. I also removed the dark blue strip around the ankle of the sock before stitching the sock toy closed, this now became a collar with a bell (again from the crafting supplies).  A bit of stitching for nose and eyes and voila… meet Bosworth the Sock Critter!

Granted, this activity needs willing adult participation, but Sam really enjoyed seeing his sock become a new toy and loves how cuddly Bosworth is.

A quick search online will show how many possibilities there are; we already have a second toy (an elephant) in progress and Sam likes the idea of making a couple for his Grandparents as little keepsakes of when he was a baby. You really are only restricted by your imagination, and how creative you feel like being x

Our 11-year-old daughter Isla doesn’t have much stamina. She has to work much harder than most to coordinate those easy movements we do subconsciously. My husband and I are keen walkers and ideally would love Isla to be able to join us. However, we are not able to cover any distance as she tires easily.

When Isla was a little younger and smaller, we were able to take her for a ride with a tow-along bike. This gave us all much needed freedom and our ride along the paths of Wanaka in New Zealand’s South Island is one of my favourite holiday memories.

This year while on holiday in Wanaka for a second time, we realised that Isla was now too big for a tow-along bike. So, we decided our goal for this year would be for Isla to learn to ride a bike independently.

We had tried various things in the past. When younger she had trainer wheels and a handle on her bike. She didn’t have the motor skills to pedal and it wasn’t long before the handle broke off due to the pressure placed on it through pushing and steering. Then there was some success with a trike in the back garden and Isla being able to master turning the pedals. Over the years she also had the opportunity to practice this skill on 3-wheeler bikes at the Special School she attends.

There is a company here in New Zealand that makes custom bikes for kids with special needs. This was definitely a consideration for us but they are really expensive and also hard to transport from place to place.

We then discovered you could actually purchase larger trainer wheels online. We had a bike that used to belong to one of Isla’s sisters. We purchased and attached them and our mission ‘To Ride a Bike’ begun.

With Isla having poor spatial awareness, no fear of danger mixed with high anxiety and weak muscle tone, there were a few things to take into consideration when starting out.

We started on a nice, flat wide path in the park surrounded by grass. She took to it straight away and zoomed off which was great to see but also a little unnerving. She got so far ahead of us and I didn’t know if she would remember to apply the brake!

We have since figured out that I need to talk her through each step. I need to tell her when to apply her brakes, tell her not to stop when going around a curved hill and to tell her to move over when someone is approaching. All of these things have to be practiced over and over until she masters it. I see little children riding their bikes so naturally, just as my older girls did when they were young, and it just makes you realise how much harder she has to work in all areas of her life.

The only thing with bikes having larger trainer wheels are they are prone to tipping easily. With the wheels being wider than the bike at the back, it is easy to have one wheel off the path making it unstable. After a couple of close encounters one of the first things we did was to train Isla to put her feet down if the bike was tipping to help steady it.

With the Covid-19 social restrictions being put into place here in New Zealand, we are only allowed to leave our homes for exercise in our local area. This has become a great opportunity to get out on the bike every day. Getting Isla out the house to do any physical activity is difficult unless she is highly motivated.  Luckily, she is always keen to go for a bike ride.

Having autism Isla enjoys speaking her mind and doesn’t care what people think of her. She has taken the 2-metre distancing rule very seriously. She rides along ringing her bell yelling 2 metres away!!!! Are you 2 metres away? Although this is often embarrassing, it is highly effective for getting people to move away from us!

We practice on the same route every day, so she learns how to control her bike with various gradients. She is definitely improving each time we head out. I am hoping she will get to the point where we can remove the trainer wheels and she will have total control over her bike and her body. Like everything in Isla’s world patience and repetition is key.

Never have I ever had so much and yet so little to say all at once! I am sure we can all collectively agree that 2020 has been one of the strangest years ever.

In so many ways we live our lives by quite strict rules. We are often isolated from the world. We shielded from illnesses long before it was a “thing” to do. We feared hospital trips in case of picking up nasty extras. We kept our distance, we had adapted our lives to suit our situation. So even before all of this, some of it seemed to come quite naturally to us. However equally there have been many challenges and difficult decisions to face along the way.

I had kind of hoped that being in lockdown would force us into a more sedate, calmer way of living. I thought the break from appointments, procedures etc would be a welcome change in our lives.

How wrong I was!

The first few weeks were nice. Lots of time as a family, finding new ways in our home to have fun and make memories. We even got to go on regional TV (distanced) and talk about the challenges families like ours face during isolation.

Fast forward a few weeks and I sort of feel like a hypocrite. Last week, after much convincing, and reassurance from her team… we sent Amy back to school. You see, all children with an EHCP (educational health care plan) are still legally entitled to access education. The caveat to that is that Amy is medically complex and had received the letter from the government advising to isolate for 12 weeks.

I cannot even begin to put into words the level of chaos our lives descended into after only a month in lockdown. Amy changed. She hated all of her toys. All of her videos. All of her music. Every “change of scenery” (i.e. going into a different room or space in the garden) was met with screaming frustration, pulling of hair, and genuine tears. It was heartbreaking. She had almost entirely detached herself from reality. There was no eye contact, no socialising. Only crying.

Amy is an incredibly bright little girl. However, she still has delays and a cognitive impairment. I have struggled to find a way to help her understand that she can’t go to the shops right now, or she can’t see her grandma for a cuddle, or that she can’t go to respite to stay and so on. To her it must look like we are suddenly punishing her for absolutely no reason.

The crying quite honestly would start at 7am, and go right through to 7pm, followed by a night of disturbed sleep and distress. It was a lot like how she used to be as a baby before we had resolved a lot of her feeding issues. Our bodies would ache to the core. Her dad and I work really well as a team, either taking it in turns, or working together. When one of us becomes overly stressed, the other will take over. It’s a fantastic system but it doesn’t matter how hard you work, when suddenly your entire support network (school, family, respite) vanishes, it is going to eventually take its toll on you.

Initially, I felt a lot of guilt.

We had managed to keep her entirely indoors for over a month, we had done so well. Then came the first day we wandered down the road with her… just to see what would happen. She was silent. Aghast and amazed to once again be encountering the outside world. I remember the first few times I left the house, even for five minutes. I would come in, wash my hands, hand gel, anti bac the door handles, strip my clothes and throw them straight into the machine, and then go for a shower. I can’t work out still if that was over the top or not, should I still feel this way? Or should I accept that our current situation means that we HAVE TO leave the house. A child with a severe neurological disability is going to need catering for in a situation like this. Like everything else thus far we would need to look at the pros and cons.

Every time we are required to make difficult situations with regards to Amy, I am thrown back to a memory from 2014. Amy was in the neonatal ward after a month in NICU. Her consultant asked me what my main concerns were. What I said that day has stuck with me, and I recall it every single day. I said (I mean, obviously I’m paraphrasing) “all I care about is that she is happy. That she can let us know when she’s in pain. I don’t care what her outcome is, I just want her to be happy”. When she is not happy – I am not happy. None of us are. So, living with her gradually deteriorating mentally more and more felt like actual torture. This is still my ethos today, six years on. I’m not being biased when I say this, but her smile actually is amazing. Everyone says it. When she smiles, I know at that precise moment, that for now, everything in her world is right. I think that might even be my reason for existing; to see that smile.

It’s made me think a lot, this whole thing. Having already been a socially anxious germophobe, it has been sort of nice in a way to finally see others stoop to my level! However, I deeply miss my parents, and mum in law, and just my whole family and friends. I miss being able to go for a coffee, or to nip to the shops. More than anything, I miss getting out properly into nature, going on days out, going on adventures with the ones that matter. Don’t get me wrong – I love that suddenly no one feels the need to touch everyone, and that there is less traffic, and that suddenly it’s okay to have no weekend plans, but I long desperately for that feeling of normality.

In my head, I have “clapped for the NHS” more than once a week for the last 6 years. I’ve clapped for them in my mind every time I fall asleep knowing that across the hall, my child’s heart is still beating, thanks to them. They saved my life and also my child’s’. It’s great to see most of us are on one page, uniting to celebrate and appreciate such an important part of our society.

We actually had to go to hospital recently. We had this confusing medical situation where Amy was refluxing her feed from her bowel back into her stomach. (She is tube fed by a pump into her jejunum – so really nothing should be in her stomach). It was really quite alarming and also proof that no matter how well you know your medically complex child, there will always be a new curveball ready and waiting to bop you over your complacent head. I was so nervous going into the hospital. The corridors were eerily quiet, I managed to get a parking space (what!?!), and all of the familiar faces were there, except with masks and gloves. Honestly, it felt almost post-apocalyptic. We weren’t in long. They wanted to keep us in, but once I’d learned that the plan didn’t involve anything “hospitalising” (i.e. IVs, oxygen etc) I was outta there.

You could almost make out the puff of smoke from us zooming on out of there like in a road runner cartoon. We’ve managed to actually avoid what I think would have been 3 trips to hospital thanks to respiratory issues, gastro issues, and seizures. It is a reminder that whilst sometimes we feel entirely out of our depth and baffled by this whole thing, that actually we are also competent parents that understand a lot about our child’s complex needs, and that we have the resources, contacts and equipment to try and prevent more admissions. It has been a long road but learning to stay home has been a lifelong lesson for Amy.

How is everyone else doing?

How many of you have perfected sour dough bread recipes? How many have taken up a new hobby like sewing or crochet? For me, I am lacking in these things but am proud to be reading much more and also doing more work on improving my mental health. It is shame however I am not doing more for my physical health. I had hoped the lack of open fast food restaurants would have a positive impact, but I find I am very much fuelling myself on entirely white bread these days! I have even found an awesome local bakery that delivers, that I plan to use long after this is all over!

I hope everyone is doing okay. I hope that you are managing to stay connected with those who matter, and still accessing whatever therapies and specialists you need to during this time. There are days where I feel really optimistic and hopeful, and days where I feel really quite low and desperate for all of this to be over. I remain ever grateful to all of those close to me, and a local charity called Reuben’s Retreat who have been doing so many awesome things for families like ours. I am sad for some of the stuff we were meant to do for Amy being delayed (keto diet, going on an adapted holiday etc) but hopeful that when we do get to do those things, that we appreciate them so much more than we would have before.

I have been so moved by some of the amazing things our communities have been doing to keep everyone going. As much as I have found the awful side to people this pandemic has brought out; I still feel that there are so many good people out there, ensuring that vulnerable people have what they need to survive and thrive.

I have definitely learned the importance of not judging. I recently read a story whereby a lady had had to use her dad’s van because her car had broken down. It had an “up north” address on it as it was a company van. She lived down south in a popular tourist destination area. People had seen this van in use and assumed that the people had come down south to spend quarantine on “holiday” and had been sending the lady death threats, reporting her on social media etc. The lady was devastated and terrified for her life. My heart sank when I read the story – she was already in an unfortunate situation, but now was a victim of online bullying and serious threats. It just goes to show that everything isn’t always quite what it seems. The person in the shop buying more than two of something may actually be shopping for their elderly neighbours. The family you see driving “in the middle of nowhere” might be desperately trying to calm their child who has autism that needs long car journeys to self-regulate. Yes, there will always be selfish fools who flout the rules and do what they please, but more than ever this is a time for compassion. There have been many things I have done in the interest of appeasing our distressed child, that perhaps an outsider would judge us harshly for… but if they knew the truth, they would do the exact same thing.( I am however guilty of judging those who incorrectly use disposable gloves when out and about!!! The hypocrisy continues haha)

CDG Awareness Day is upon us. Our family is busy preparing awareness day t-shirts, gathering up our green shoes, and posting reminders on social media.

For us, CDG Awareness Day is an important day of the year. Our 7 year old, Christopher, has one of the many different subtypes of congenital disorder of glycosylation. He has PMM2, one of the most common subtypes of the disorder. And although it’s the most common, the symptoms that affect each individual can vary greatly. From head to toe, he’s affected. He has cerebellar atrophy, hearing loss, severe retinitis pigmentosa, an oral aversion, seizures, liver disease, fed with a GJ tube, osteopenia, hypotonia, developmental delay…the list goes on. But even with all of that, he wakes every single morning with a giggle and a smile. As I lift his 40 pound body and carry him downstairs, I know that there’s no place he’d rather be.

The other day I was preparing a sign for CDG Awareness Day, and our oldest son looked at me and said “we’re so lucky to be part of CDG.” Lucky. Not exactly a word I would have uttered when we first received our son’s diagnosis. My heart was broken. I was beyond worried and fearful for the future. No, I definitely wouldn’t have said we were lucky that day sitting in the specialists office downtown. But when our oldest said it, I smiled and told him that “yes, we are pretty lucky.”

The CDG community is like no other.

The CDG community is made up of fierce advocates, loving families, and amazingly strong friendships that blossom no matter how many miles are in between. Our son was recently intubated and in the intensive care unit after going into status epilepticus, and there was zero doubt in my mind that my friends from afar would have hopped on a plane just to sit with me and hold my hand. Because my son is theirs, and their children are mine. We are in this unique world together. There isn’t anything we wouldn’t do for each other. And I guess, that is pretty lucky.

May 16 will be here soon! Please help us spread awareness for children like Christopher, CDG angels, and all families affected by congenital disorder of glycosylation. More awareness means more funding, which could lead to treatments and possibly a cure. More awareness could help a family receive a diagnosis they are longing to find. More awareness leads to more research, resources, and improvement in the quality of lives for the individuals and families affected by CDG.

*Head over to ​CDG Care​ to see more ways you can get involved. Also, if inclined, please sign this ​petition​ for the World Health Organization to recognize May 16 as CDG Awareness Day.

What do you do when your child starts to say no? Whether it be verbally or using their body language to tell you they just don’t want to do something, all parents go through it!

At first it might be cute, you might laugh it off or let them away with it but eventually you realise that sometimes the things you are doing are completely necessary, maybe they all of a sudden don’t like their medicine or (and this is a big one for us) they decide that they don’t want to do therapy/exercise.

So what do you do!?

DISTRACT and REWARD.

It sounds easy, but I’ve experienced first-hand that it’s not always as easy as it sounds, and it can take some thinking! For medicines, perhaps start a sticker chart for every time they take it, or give it when they are watching tv and won’t notice as much or turn it into a game!

When it comes to physio/exercise the same applies. One thing that I’ve found to help with doing exercises is the mouse game! My son absolutely loves this, he has a lot of stretches and exercises he has to do lying down so we pretend there’s a mouse crawling about and we have to search for it, so he has to lift one leg, then the other, open and close his legs like scissors, arm stretches, roll on to his side and then the other side and even sit up – all searching for our little pretend mouse! We even manage to practice high kneeling looking for mouse over things.

It’s such a simple game but it works and requires no equipment!

When you make something sound like a chore or hard work then it’s no wonder that they don’t want to do it, turn it into a game and offer rewards and children end up changing their minds very quickly!

One big thing I also realised was to stop asking. I know it sounds silly but often I find that if I don’t ask then it doesn’t open up an opportunity to say no! So instead of “shall we do your medicine now?” you could say “ok it’s medicine time, let’s pick a sticker!” Or when I know I need to do floor physio, I don’t say “do you want to do some exercises?” I say “I’m sure I just seen a mouse! Let’s try find him”. How you word things definitely helps – good luck!

 

Right now, everything seems overwhelming. Society is at a standstill and it feels as though there is no end in sight. It is a situation no one ever expected, yet one we are in. Something I was not ready for was the stress of having to work from home as much as possible in order to care for my children.

The two worlds just do not combine in any way, shape or form.

Within a day I felt I was failing on all fronts but tried to carry on. I so desperately wanted to be able to continue my job as it is a job I love, whilst caring for my children at such an awful and difficult time. Then I saw a post about making small changes rather than trying to change everything at once. The idea was that if you wanted to re-decorate your entire house, you wouldn’t expect to get it all done in one day, you’d take it room by room, step by step. The situation I found myself in was no different and so this is what I needed to do.

I cannot manage a full-time job whilst also caring for my children, one of whom has complex medical needs, full time. I also cannot make a schedule for each day of activities and expect to stick to it to try to teach them everything they are missing out on at nursery, whilst ensuring Alfie’s additional needs are all being met. I am only one person, and most certainly did not choose a career in teaching.

So, I stopped. I stopped putting pressure on myself to work constantly and stopped trying to do activities all day at the same time as working. I am just playing with them and let them choose the activity as that is what they need right now when everything else is out of our control. Yet I’ve started to include certain, small things, each day. Such as counting with Rory or helping Alfie to learn to use his communication buttons more.

I took a step back just to breathe and gather myself before I broke, and I realised how close to breaking I was.

We can’t do everything. There is a reason why children go to nursery and school to learn, rather than parents being the ones to teach them. There is a reason I picked the career I have. I cannot do both all of the time, and that is okay.

Everyone just needs to remember to take things in smaller steps instead of setting goals that are unachievable and ultimately do more harm than good.

The room had become a familiar place to be. It no longer frightened me. It became like his own little flat, he had everything he needed and loved within those four walls.

I’d knock before entering, always bracing myself in case I could spot changes in him that my parents or siblings hadn’t spotted on their earlier visits.

It was the 12th of March when the news came out about all schools closing the very next day due to the Coronavirus. “Must be serious enough so” he stated as I finished reading the emails from my children’s schools. “Aw sh1t “ I sighed, knowing this meant that my eldest son would more than likely not be able to attend his respite center. “Wonder will it last long” he spoke in a soft whisper, a voice which I was now becoming accustomed to. “I hope not”

We played on his computer, took a spin around the grounds and stopped off at the chapel before I left for home.

“See you soon” I gently kissed his forehead. He winced but smiled. Something else I was becoming accustomed too; his everlasting pain.

“Love you” he smiled

“Love you too” I blew a kiss from the door.

She stopped me as I was sterilising my hands.

“You know now with the virus, we are going to have to be stricter on visitors. There are so many of you” she smiled. I nodded, knowing she meant his whole family visiting all the time would probably have to reduce. There were nine of us altogether, so she did have a valid point.

“Will it last long, do you think?” I asked.

“No one knows” she rubbed my arm, “I hope not” she added.

I felt my eyes water. I swallowed hard. I opened my mouth when she smiled sadly at me and knew what I was about to ask.

“He has proved us wrong for the past 4 weeks, let’s just focus on how well he is doing now” she winked.

Ireland went pretty much into Lockdown over the following days.

I visited once more but with restrictions getting stricter and stricter, I decided it was best to ring, FaceTime and text him.

Saturday the 21st of March they rang and asked if all of us could come in as his time was near.

I stood outside fighting for breath before ever pushing the double doors through.

My parents and siblings along with his close friend were sitting around his bedside.

He was asleep.

He wasn’t in any pain.

We played music and told stories.

We cried.

We laughed.

We prayed.

And we cried some more.

We held him and each other as my brother took his final breath in the early hours of March 22nd, Mother’s Day.

There was no traditional funeral, no wake, no stories told for the first time and no faces to put to the names we had heard so much about.

I’ve been to my brother’s grave twice.

I’ve not sat with my family.

I’ve not grieved with my family, we are all apart and will be until this virus leaves our island.

The virus has snatched away the comfort of family and friends during such a devastating time yet; the virus has shown us that people are kind, considerate and that we are indeed a race that thrives on the human touch.

I implore you all to stay at home to protect us all and to let families like ours get together once more so we can say a proper goodbye to our wonderful, beautiful brother.

Last week James needed his hair cut. A simple enough task you might think, but in James’ case it is one of very many tasks that require a routine to be known, and more importantly rigorously followed, in every aspect. We had been putting it off for a while, using lockdown as an excuse, but in reality James’ lockdown haircut was the same as any haircut he has ever had, as we have to follow the same routine and do it all at home.

Firstly, there is the location; sat on the wooden bench in our hallway at home. Then there is the identity of the ‘barber’, me, ably assisted by Clare (his mum) who keeps all of the clippings out of his face. Then there is the ‘distraction’, James’ iPad, fully loaded with films and his favourite YouTube clips (currently roller-coaster and train rides, he wants to go out!)  Finally, there is the clipping process itself (grade 4, by the way, for any aficionado’s), which involves starting at the back, then the front, and finally the most difficult and suspense filled part of all… around the ears.

James has his hair cut like this about four or five times a year.

As long as we keep to this routine, all is fine. Any change would be enormously difficult for him, and therefore for us. I have visions of him with Grade 4 at the back and front but long at the sides over his ears, but lockdown is at least saving him (and us) from anyone seeing that if it happened!

The reason I share James’ haircut story with you is to illustrate that routine and familiarity are fundamentally core to the coping mechanisms of many children and young people with additional needs; particularly but not restricted to Autism Spectrum Condition, ADHD and other similar neurological conditions. So often this is misunderstood by adults, or just plain missed, with awful consequences for the child/young person.

I heard a story a while ago of a young person with ADHD who, in order to cope with change, needed to stand in the doorway of a room he was entering/leaving and tap several times on the door frame. He did this wherever he went, including at school, but often 30 pupils trying to leave the classroom for their break together were not interested in waiting for him to complete this important routine and would push him through the doorway, resulting in him lashing out in desperation. This was interpreted as violent behaviour and he was excluded from his school and sent to a Pupil Referral Unit for young people with violent behaviour.

Now imagine if the school staff had been better trained. If they had had a system where that young person could leave 30 seconds before everyone else, or leave after everyone else had gone (whatever worked best for him), so that he could complete his routine. If they had understood why he needed to do that. If they had understood other ways in which he coped with change, with a busy school full of pupils and noise, with the overwhelming of his senses on a daily basis. Perhaps then there could have been a better outcome for him and for the school, a better strategy than sending him to a Pupil Referral Unit.

The opportunities to make good or bad choices regarding children and young people with additional needs or disability exist in all walks of life. I remember a youth leader being put through to my ‘phone one day whose opening line was; “I’ve got this lad in my group, he’s got ADHD and he’s a nightmare. What can I do to exclude him?”

I took a deep breath and asked the leader to explain to me what had happened.

It seems that during the youth group’s ‘talk time’ this lad had started to get a bit unsettled, showing early signs of anxiety and stress. The leader had told him that as he couldn’t sit still and listen, he wasn’t going to get tuck this week. The lad liked tuck (who doesn’t like tuck!) and so things ratcheted up a notch or two. The leader responded by saying that as the tuck penalty hadn’t worked, the lad was suspended from club for a week and so couldn’t come next week. Next week was party night and the lad had been looking forward to it immensely, so things then really kicked off and he was sent home (I’ve summarised a much longer story).

I rewound the conversation with the leader asking him to identify all the times that opportunities had been missed to support this young person, to recognise his needs and to help him to manage his stress and anxiety. There were many… the leader finished the call saying that he was going to call the parents of the lad straight away, to apologise and to invite him to back to the party the next week, by which time a strategy to support the lad would be in place, known by the whole team.

All of these examples show us that taking the time to understand each child or young person individually, to understand what they find hard and why, to understand how they cope (and sometimes fail to cope) and why; to help them to understand that we are there for them, to help them and to support them, all of this is so vitally important. So often, the challenging behaviour that we might see, and wrongly judge them for, is a final cry for help when we’ve missed so many other pleas for help and support already. It’s a last desperate way of trying to get our attention, or a final attempt to respond to their overwhelming feelings.

Surely, however we look at this, we must put the child/young person first; do everything we possibly can to remove or limit stress and anxiety, ensure the necessary routines are followed, and so help them to cope… Putting their needs above our own; us doing the adapting rather than expecting the child to.

That’s why, in about three-months’ time, I’ll be sat on the wooden bench in the hall with James (always on his right), clippers in hand with roller-coaster rides on his iPad, praying that I can get the side bits of his haircut done so that he doesn’t go out (if we can by then!) looking like Max Wall…

Haircut Sir?

Families of individuals who have a medical condition or other additional needs are no strangers to grief and loss. While the journey is undeniably bursting with boundless beauty, extravagant grace, and mountains of hope, there is also a process of mourning that often takes place.

Parents may find themselves grieving the loss of so many things they took for granted before entering into this unique parenthood experience: uneventful trips to the grocery store, friendships and support systems, holiday travels, family/childhood experiences they dreamt of, etc.

Besides the grief that comes with adjusting to an unexpected way of life, there is also much grief that accompanies families who watch a member live with chronic pain, physical struggle, communication struggles, constant medical emergencies, or other difficulties. On the most extreme end of the grief and loss spectrum are the families who are grieving the loss of a person who passed away due to complications associated with their diagnosis.

As a caregiver and mom to multiple children and young adults with additional needs, I will freely admit that large amounts and grief and loss come with this territory. However, I have recently found myself reflecting on the amount of loss I feel and how immensely it pales in comparison to the loss of those who are unaware of the loss they are experiencing–those who choose to remain distant from individuals with additional needs.

When my husband and I first became parents to children with additional needs we were shocked by the amount of people—our people—who reeled backward and ran in the other direction. We have watched time and time again as our children have been seen as less than or unworthy of being acknowledged, considered, or known.

For some reason, a large part of the population is tremendously uncomfortable with people who are different than themselves and rather than choosing to lean in, learn, and grow in their exposure and experience, they simply choose to turn a blind eye and carry on their much-too-comfortable way.

For several years, I have seen the absence of others as yet another loss our family has experienced.

In many ways, it is. I miss the friendships and support we had before parenthood. I grieve the amazing relationships my children could have had. However, the vastest void lies in the lives of those who choose to bow out. I truly ache for those who cannot find it in themselves to see my children as everything they are instead of a label. I feel so sorry for the people who would rather rest in their own comfort zone than experience the love, laughter, and valiant way of life my children unashamedly possess.

The greatest loss will never be the achievements my children do not obtain, the vacations left untraveled, or even the loss of a person taken from earth too soon. The greatest loss would be to have missed out on active participation in these gloriously lived lives in the first place.

No matter the heart-crushing challenges our family meets each and every day, never in a million years would I choose to be anywhere but here: smack dab in the middle of the magnificently wonderful, miraculous mess of it all.