Our Diagnosis Doesn’t Define Us

I was born with a rare genetic condition called Oto-Palatal-Digital Syndrome, although I never knew there was a name for it until my daughter was born in 2006 and diagnosed by a genetics team.

My mother was 41 years old when she gave birth to me. Back in 1972, this was considered ancient to be having a baby. I had a cleft palate, a small mandible, and two fingers (the middle and ring) on each hand that were fused together. The doctor, who had never seen a case like this, told my mother I most likely wouldn’t live more than 24 hours.

After I baffled everyone by surviving, the same doctor gently suggested to my mother that there were options for children like me and that she should look into them, as raising a child with issues like mine would surely be a burden.

My mother firmly told the doctor that she was taking her baby home.

My issues were attributed to a myriad of things from “old egg syndrome” to the fact that my mom smoked, although to her credit I believe she quit while she was pregnant.

As I grew older, I became more curious about my condition. I was told by my pediatrician that it was a syndrome of some sort, but because I had a mix of characteristics that were seen in a few other syndromes, it was hard to narrow it down. It could also be a fluke, I was told; a random mutation of a gene.

When my husband and I decided to start our family, we went for a genetic counseling appointment. I had flashbacks to high school biology class as the geneticist made a Punnett Square, and both of our medical histories were documented at length. It was determined that, although there was no definitive name for what I had, if I did indeed have kids, each child would have a 50/50 chance of inheriting my condition.

In 2004 I gave birth to our first child, a healthy baby boy. Almost two years later, I found out I was pregnant again. At my 20 weeks ultrasound. I found out that we were having a little girl, but the joy was dampened a little when the scan showed a small jaw, much like mine had been.

Although I had been mentally preparing for this since our genetic counseling appointment, it still knocked me for a loop, and I had a good cry in the doctor’s office.

Lilly arrived a day past her due date and was airlifted to a larger hospital two hours away from home due to her complications.

She had surgery on her jaw at five days old, and less than a week later I heard the words “Oto-Palatal-Digital Syndrome” or OPD, for the first time. It was bittersweet, as no mother wants her child to have a genetic condition, but now I had something I could work with. A diagnosis — something I could type into Google and research the heck out of. Or so I thought.

One of the first things I found out was that OPD is extremely rare. When Lilly was born in 2006, there were less than 60,000 known cases worldwide. The numbers continue to grow, as more research is done, but I still have yet to meet anyone in person outside my family with OPD. I have found stories of individuals on the internet with it, but they are few and far between.

We have learned that OPD is a spectrum disorder.

The three commonalities are a cleft palate, hearing loss, and webbing of the fingers and/or toes. Beyond that, an individual can have more severe craniofacial issues, intellectual disability, or heart problems; each case is unique.

My daughter had multiple feeding issues and severe gastric reflux that resulted in a feeding tube placement. She was also diagnosed with an intellectual disability, as well as autism, at the age of two and a half.

Our youngest son, who was born in 2011, also has OPD and does not have intellectual disabilities, but he had a tracheostomy tube placed at two days old because his jaw was extremely small, even smaller than mine or my daughter’s had been. His airway was compromised, and jaw surgery for him was not an option at the time.

At four days old he went into acute respiratory failure. He was retaining carbon dioxide in his lungs and had to be placed on a heart/ lung bypass machine called ECMO. He was later diagnosed with chronic lung disease, which is unrelated to his OPD.

After I learned of my daughter’s diagnosis, and therefore my own, I realized how NOT having a specific diagnosis when I was younger may have had its advantages.

I was treated like any other child when I was growing up.

I was aware from an early age that I looked different than other kids, with my smaller jaw, and unlike most of my classmates, I was pulled out a couple of times a week for speech therapy. Beyond that, I lived a fairly normal childhood. I strive to do the same for our children. Our diagnosis will always be part of who we are, but we will never let it define us.

Diagnosis Day

The day they take their first steps, their first words, first day of school… There are an abundance of days that just stick in our memory for us to cherish for years and years.

What about those days though, that we wish we could shove far back in our minds that we don’t ever have to relive or remember them again? As awful as it sounds, I have one of those days.

Our diagnosis day. Granted, there are families out there that would give anything for a diagnosis, an answer. But for us, it was a day I will never forget.

It all started when our second trimester blood screening came back abnormal for our alpha feta protein levels. This suggested the possibility of a neural tube defect, spina bifida to be specific. Right around the time that we found out we were having a boy, we get the shocking news that our son may come with a lifelong diagnosis.

A diagnosis that left his lower spine open, failing to fully fuse together in the first month of foetal development. A diagnosis that meant his spine and all of it precious nerves were open to physical trauma since those very first moments of pregnancy.

Of course, having our son here now with us four years of age, all this sorrow we felt seems insane. But it is the truth.

No one receives a diagnosis for their unborn child and leaves that doctor’s office to celebrate. They leave in tears, fear, and this unknowingness of what the future holds. They hear the textbook definition of this ‘said diagnosis’ and are always given the worst-case scenario so that the doctors cover all possibilities.

Of course, this is not to go on and say that all doctors won’t give hope, because we found ourselves blessed with a high-risk doctor who pulled out his phone and showed us pictures of other children with the same diagnosis smiling and living life.

Our diagnosis day was just a very trying time in our lives, unable to imagine how we’d care for this medically fragile child when we knew not even what it was like to have a new born yet.

But with grief, came support.

From other families who went through what we were currently going through, they reached out and showed us actual physical proof that although it would be hard, it was darn worth it!  Now, my child is amongst the smiling pictures that are shown to future parents when they need that light, that hope.

Answering Children’s Questions About Additional Needs and How Winnie-the-Pooh Helps

A question I get asked loads of times is this; “How can I explain additional/special needs to children?”  The answer depends on the context, as there are different ways that this can be responded to, determined by who the answer is meant for.

Are we responding to a question from a child with additional needs themselves? “Why am I different?”  Are we responding to a question from other children “Why are they different?”  Or are we trying to figure out an answer to a question we’re asking ourselves “Why is my child different?”

A starting point as we try to navigate a path through these questions is to grapple with a rather large issue; what is “different”?

All of the questions above have been, rather crudely I admit, couched in a way that includes the word different.  The questions are all based on questions that I, and I’m sure many of you, have been asked many times.  But what is “different”?  “Different” to what, or to who?

We are all different, unless we have an identical twin, so there is really no such thing as a “normal” person to be different to; we are all different to each other.

So where is the line drawn that causes us to ask the questions in the opening paragraph?  Is someone considered to be on the other side of that line if they have red hair?  Or one green eye and one brown?  Or are under, or over, a certain height?  What about if they have a birthmark?

Hopefully we have moved on from the time when people would be stared at and thought to be “different” because of the colour of their skin, although there are still recent stories that suggest this is not entirely the case yet.

So where is that line, who gets to draw it, and why should children with additional needs or disabilities find themselves on the “wrong” side of it so often?  On the side that isn’t “normal”?

One suggestion I give to people trying to explain this to children is to gather them together and ask them what is different about them compared to the rest of the group;  encouraging them to include affirming differences such as “I’m good at football”, or “I collect unicorns”, as well as things that are physical differences such as “I’m taller”, or “I have freckles”, for example.

Then ask them if they can remember a time when they have needed a bit of extra help or support, prompting them to remember the time when they fell out of a tree and broke their arm, or when they were sad because their pet had died, or when they were poorly.

It is then easier to help them to use these examples to better understand that everyone is different, none of us are “normal”, there is no such thing!

And all of us have times when we need a bit of extra support or help, whether we have an additional need or disability, or not.  Helping children to understand this through their own experiences will help to give them a reference point for them to be more accepting of others.

It can also be helpful to think about a group of popular children’s characters and discuss the differences between them.

The characters in the A.A. Milne Winnie-the-Pooh stories are a great example for younger children, with very different characteristics, abilities and attributes to be found in the various characters in the Hundred Acre Wood.

Tigger is very bouncy and confident, while Eeyore is quieter and likes being on his own.  Owl is very wise, while Roo, being younger, still has a lot to learn.  Every one of them is different, as are we all.

The hardest question can be the one from a child themselves… “Why am I different?”  Perhaps what they are really wanting to know more than anything else is whether their perceived “difference” affects the way we might feel about them… especially if they have experienced rejection at school for example, due to their additional needs.

The question that might be in the deepest darkest corner of their breaking heart might be “Do they still love me?”

To which possibly the best response it might be possible to give comes, with a little adaptation, from the pen of A.A. Milne, through these words from Christopher Robin to Winnie-the-Pooh; “Promise me you’ll always remember… you’re braver than you believe, stronger than you seem, smarter than you think, and loved move than you know.”

Maybe that’s the best answer we can give to a child who asks us that tough question, and by not just saying it but living it with them we can help them face whatever challenges lie ahead together.

As A.A. Milne once again puts it so well…  (Piglet:) “How do you spell love?” (Pooh:) “You don’t spell it, you feel it.”  I think, perhaps, we can all agree with that!

A Diagnosis Anniversary

I sit with him most days trying to get a smile, a smirk or even a little kiss.

He’s a far cry from the affectionate little boy he once was.

There was a time not too long ago that he would climb all over me slobbering his ever-wet lips onto my face, eyes, ears and even my head.

He loved to be loved.

These days are different.

These days are darker.

He’s there for moments at a time.

Back in 2008, I believed that the doctors could have been wrong. They may have had the syndrome right but there was no way my little hyper, energy filled, affectionate boy could ever lose the ability to walk, eat, talk or understand.

Sadly, they were right.

I think back to that day and how I believed that it was the worst day of our lives but now, these days, I don’t see that day as the worst, it was simply just the start.

The five year and ten-month battle to find out what was different about my little boy had come to an end that day.

Answers were given.

Answers which fuelled more questions.

Answers we could never have predicted to come our way on that wet day in March.

Yes, we were given answers but we were left with more questions than a wide-eyed toddler learning about the world.

Diagnosis Day for us now, is something like an anniversary.

Every March we recall the same story only lately, over these past few ‘Marches’ we recall Ethan. We recall the little boy pretending to be a plane, oblivious to the heartbreak now surrounding him. We recall him climbing onto my lap and telling me “It will be okay mammy”.

We recall him asking for ‘Supermacs’ because he was a good boy at the hospital. We laugh when we recall him telling his uncle to ‘relax’ as my brother wanted to cuddle and hold him tight upon hearing the news.

We no longer just focus on the heartbreak when the doctor used the words “Go home and love him, for you won’t have him for long”

The heartbreak from that day, and those words has shifted, allowing us to recall more parts of that day, a day when Ethan was still very much Ethan.

As odd, as it may sound, I’m thankful to be able to recall the day outside of the doctor’s dusty brown office.

We’ve a different kind of heartbreak and one that no one really wants to talk about.

We now have the heartbreak of remembering the same child and what he was like back in 2008, 2009, 2010…

We have been grieving him.

Grieving him even though he is here.

His body refuses to let him run wild like he used to.

His mind insists on taking all his words and memories away.

His mouth won’t allow him to eat his favourite foods and his hands no longer can make the jigsaws he once loved.

I’ll be honest; I used to dwell on our Diagnosis story.

I let it define how our world was ripped wide open and our hearts were left without protection and to a certain degree that’s still how I feel but…

Time changes your perspective.

A progressive illness changes your perspective, almost daily.

Our world has changed and been modified more times than you’ve had a hangover.

We’ve stepped into every corner of ‘Special needs.

We know what it’s like to have a child who just won’t sit still or says the most inappropriate things ever.

We are the parents of that child in school that has no friends or hits everyone he meets.

We are the same parents considering a hoist and track.

We now know all about peg feeding, bum changing, special Beds… Special fecking everything.

If I could go back to our diagnosis day, I would have looked after me too.

I would have asked for help in processing such news.

I wouldn’t have said “I’m fine”

I don’t think I could have changed the tears that were shed and still fall but I would have been more open about how ‘we’ were doing.

I would have not been focused on future Ethan. I would have tried to control my thoughts that bit better and stayed in the present with Ethan.

Hindsight is indeed a great perspective maker too.

That brings me to the present.

As I type this Ethan is screaming. (Our home help H, is trying her best to engage with him)

Ethan screams almost daily now. We are still asking questions but answers are not so forth coming.

What ‘they’ do think, is that he screams because he can or as a way to communicate pain, hunger, happiness, dirty nappy…

I use mindfulness to keep me here, in the present.

Being here, no matter how hard or sad, is important.

I want to be present for Ethan even if he is struggling.

I want to remember it all.

I want to recall the good, bad, sad, hard …isn’t that a life?

I want to remember Ethan’s life, struggles and all.

Yes, we grieve a child who still is with us and I suppose that for me, is far worse than our diagnosis day.

My advice for your own diagnosis day, try not to forget there are many days after, mind you too.

Don’t Compare

Any time a mother of a child with additional needs or a mother of a premature baby asks if I have any advice for them I ALWAYS say “don’t compare”.

Something I wish I had followed myself when my son was younger.

It’s something we all do when we have a child, you look up what they should be doing developmentally for their age and compare your child to what you are told is “normal” for them to be able to do.

You look at your friends’ babies or babies of mothers who you maybe go to groups with or your online birthing board and compare your child with others the same age. There’s always one who claims that their child is sitting up and talking in 3 different languages by 4 months old isn’t there!

All joking aside though, it’s something that can really make a mother feel low and doubt herself.

When my son was born over 9 weeks early I knew straight away that he would take a bit longer than a child who was born full term and I was constantly told by various different people that I was to go by his “corrected age” for milestones, so base development as if he was born on his due date.

I tried so hard to do this but I have to admit, I constantly compared him to other children, I seen other babies smiling at 4 weeks old and I longed for that little smile back at me for so, so long. When he did finally give me that first cheeky little grin at around 15 weeks old I think I actually cried, it was the most amazing thing! I was reassured.

Yes, he was born early and I’ve nothing to worry about… So, I stopped comparing for quite a while but it all started back up again when he was nearly a year old and still not sitting up, not even close.

Even going by his due date age this was considered “late” for this milestone and then when I really thought about it, he wasn’t doing quite a lot of things that I had read and been told he should be doing by this age, he wasn’t rolling over, he couldn’t play with his toys well as his hands were always clenched, he didn’t attempt to army crawl or anything like that.

Panic started. Why is he not doing these things? What’s wrong? Any time I mentioned it to people I was told things like

“Oh, there’s nothing wrong with him, I can tell by just looking at him!”

“Don’t worry, he’ll catch up soon”

“He’s just taking his time, he had a hard start, honestly ALL babies get there eventually”

Deep down I just knew, my mother’s instinct was telling me something different and I just couldn’t wait and do nothing about it. That is the day that my confidence and determination to get answers grew to a point where I never thought possible!

I had always been someone who was shy and quiet… This person had been replaced by a fighter. And I really did have to fight, but we eventually got the answers we were waiting for.

He had an MRI scan which showed something called PVL and he was diagnosed with quadriplegic cerebral palsy and he may NEVER sit up or walk. Now that, I don’t believe. But I’ll write about that another day!

Honestly, even now, I still find it hard sometimes when I see babies years younger than my son achieving milestones that he’s yet to achieve. I put on a brave face but often get a bit of a lump in my throat when I see that he’s still not doing these things.

However, I just need to look at him to see how far he’s come, he’s even more determined than I am to reach his goals and the amount of hard work he puts into physiotherapy each day is inspiring, plus he has the BIGGEST smile I’ve ever seen on someone.

He has already proved professionals wrong by reaching so many milestones that once seemed impossible.

I wish I hadn’t compared him to other babies/children so much when he was younger but maybe if I didn’t then I wouldn’t have gotten the answers we needed when we did, or maybe I would. I’m not sure.

One thing I will say though is if you do compare then just don’t let it take over your life, enjoy the moment, enjoy the journey, even if it’s a tough one then make sure there’s good times too because there’s nothing more valuable than smiles and laughter in life.

To Mum and Dad on Diagnosis Day

You have just received the news that your baby has, or will have, Down’s Syndrome. This must have come as a shock. Perhaps you feel a sense of grief, all your hopes and dreams for your child, for your family life and your future now lie shattered on the floor around your feet.

Perhaps you feel angry or cheated: ‘Why me?’ Or maybe you are numb, suspended in this moment, while all around you the world keeps turning as though nothing had happened.

Or perhaps you feel something else. Whatever your emotions are right now, it’s OK to acknowledge them, put a name to them – they are all perfectly natural and understandable reactions to the information the doctor has just given you. I can guarantee that you are not alone in how you feel.

Perhaps your doctor has just explained to you the ‘risks’ of having a child with Down’s Syndrome. Doctors are trained to talk in terms of risk. They have a duty of care which means they must inform their patients of the potential dangers of any procedure or course of treatment.

In the more usual kind of scenario they meet – that of treating typical people who have become sick – the other side of the coin is obvious: the procedure or treatment will make them well again. But when doctors deliver a diagnosis of Down’s Syndrome they often do not explain to their patients the flip side to all the ‘risks’ they talk about: most are not aware that a flip side exists, because they have never seen it.

I have seen it — because ten years ago I was sat where you are now, in a doctor’s office with loaded words hanging in the air all around me: ‘mental retardation*’, ‘developmental delay’, ‘heart defects’, ‘bowel defects’, ‘infection risk’, ‘leukaemia risk’ … (* the doctor’s words, not mine).

Ten years later, I hardly think about those words at all.

In these early days no one will be able to reassure you about what the future holds in store for your child. The doctor won’t be able to tell you what, if any, health problems your child will face.

No professional will be able to predict with any accuracy what your child’s level of ability will be – to be honest, the only person who can answer that question is your child them self, who will make this clear in his or her own time.

You have probably already been bombarded with information, too much to fully take on board — so I will only tell you one small thing today, and it’s this: loving a child with Down’s Syndrome is easy.

This is not because they conform to the ‘oh bless, aren’t they all so happy and loving’ stereotype; it is because your baby will be simply the most beautiful, the most exquisite little thing you have ever seen.

It is because your child will be just as engaging, inquisitive, humorous and cheeky in their own way as any other child.

It is because, at the end of the day, they are your child, your own flesh and blood, your mini-me, and loving your own child is the easiest and most natural thing in all the world.

Perhaps it is also because children like ours have a natural, subconscious wisdom, a knack of cutting straight through the crap to the heart of what’s important. They teach us as much as we teach them, they show us what it truly means to be human, and to be humane.

This love is the foundation of all else.

You may not believe me now, but you can do this – you are braver, stronger, more resourceful and resilient than you know. This love will bring those qualities out of you. Trust me, they are there, even if you can’t feel them yet.

There is perhaps one more thing I should tell you before I go: these early days, when everything is new and frightening, and shadowed with grief; when the weight of your child’s diagnosis presses down on your shoulders like you’re carrying the whole world on your back, they do pass. These days do pass.


Red Tape Everywhere

I sometimes hope (in my perpetual foolish optimism), that someone will maybe look at your personal situation and think to themselves “Hmm. I bet I can use my common sense here in order to make this person’s already hectic life… just that little bit easier.” Very rarely actually; this happens. But more often than not, I find myself overwhelmed with frustration and crying into my dinosaur mug.

Today’s example?

Well, we’ve had a really bad few months. Amy’s seizures have been out of control… and of course we are approaching chest infection season. Every attempt I have made at having a doctor’s appointment for myself, a nice leisurely catch up with friends, or even just tackling the copious volumes of chores; has in fact been rendered a waste of time.

In favour usually of rushing to hospital, or indeed travelling there in an ambulance with a poorly Amy.

I’ve been so frazzled between medical interventions, hospital stays and sleep deprivation that I entirely overlooked the fact that Amy’s blue badge had expired. Mortified I cleared my schedule at the next possible opportunity and set to getting it renewed.

It was of course not as straight forward as I had imagined. I needed to send proof of address, proof of high rate mobility, my favourite flavour of crisps, my least favourite sports player and so on.

I sent it off by recorded delivery, certain that I was not about to try and get all of this reprinted. I even hand wrote a courteous little note in the hope they would find me endearing and approve us immediately. WRONG.

A few weeks on and I receive a letter. The letter states that the proof of mobility was from 2017 and that they wanted something more recent. I re-read what I had sent them and the letter even stated “approved until 2022”.

What more could they want? Blood!

The lady on the phone was very polite and understanding, however bound by policies, rules, regulations whatever. So, she told me to phone DWP and get a more recent letter to send to them. In my emotional state I ranted and cried down the phone that her cerebral palsy isn’t going to just get better one day… and that I as a special needs parent already deal with enough silly issues and simply don’t need this hassle.

She verbally nodded, agreed, and repeated herself. I admitted defeat, apologised, and sobbed my way over to get the number for DWP.

15 minutes on hold to DWP. I don’t even like classical music. It seems to have the opposite effect on me to what is intended. By the time the man had answered I had finished my angrily worded complaint to the local blue badge people about how silly their process is.

After a pop quiz on all of my favourite facts about ourselves (address, various dates of births, sleep position, snack preferences etc) I am informed that the letter will arrive within 7-10 days. WHAT?

In this age of technology… of snapchat, of video calls, of virtual reality even… how on earth does it have to take this long? I don’t understand why they can’t just bob a quick email over for me to forward to the blue badge people.

The badge could be here by tomorrow never mind in a few weeks’ time.

Now I know it’s my fault for forgetting to renew sooner, and I know that rules are there for a reason.  I even get that the rules are there to protect people like us from people applying that actually don’t qualify. But come on. Really.

This is just one example. I find my life to be seasoned with these little annoyances and complications. They never seem to work in our favour either. There are always unreturned calls/voicemails, letters to be sent recorded, more forms to fill… and my least favourite; the frantic foraging through our paperwork to find a specific document that proves one specific thing.

There is always one thing holding you up “Sorry Miss Brown, it would seem that the other hospital hasn’t granted us access to those records yet and I am yet to speak with our senior radiologist… we will try and find out and contact you next century”.

I feel that families like ours need our own admin office, transport team, bookings department, clinics, and a PA. It’s madness.

An example of things going right? So, I lost a part of Amy’s Firefly GoTo seat. I’ve been meaning to sort it out for ages but it wasn’t at the top of my list. So, I kept putting it off. I finally got around to emailing Firefly (who were patient with me at my failure to identify a product code/order date etc) and you know what? They posted out the part I needed THE SAME DAY no questions asked.

Why can’t everywhere be that efficient and focused? Or even half as efficient.

Recently, during a wheelchair repair I enquired with the engineer “is it you guys that can sort out the footplate strap issues?” (Amy is a thrasher… she is very good at breaking Velcro straps) “No” the person responded.

I tried not to laugh into my cup.

I expected this response. “It’s your local wheelchair services that’ll look at that for you.” to which I responded “ah okay, I will call them now whilst I remember.” So, I called them knowing exactly what they would say. You know where this is going right? “Sorry no, that’s not us, it’s the guys that come out and do the repairs that will do that.” “NO!!” I quickly asserted, somehow both shocked and not surprised at the same time.

“No. The engineer is here with me now… they explained that this is an upholstery issue and therefore not them”. I then went into overdrive explaining the issue and how Amy is kicking people in shops and injuring everyone etc. Sounding almost defeated the girl replies “OK I will forward what you’ve said to one of our OTs and if they think you need a review we will send you an appointment in the post.”

ARGHH!! I’m getting angry even retelling the story!!

It’s all a fight… who can pass the buck… who will pay for that? Not us… let’s send her from pillar to post calling round everywhere until one poor unfortunate person answers the call where mum can be deemed “unstable”. Sigh. If THEY think you need an appointment. Lady, I’m telling you… we NEED an appointment.

I don’t actively seek them out as a fun way to spend our day!! I don’t enjoy Amy missing school, or fighting for what she needs to be safe and comfortable. Really, I don’t. (For those desperate to know… they did actually send me an appointment… as did the radiologist… both for the same day this week!)

I get frustrated with myself for getting myself so upset over things like this. But the reality is they feature in almost every aspect of our child’s lives and on top of that life has other challenges to deal with. I’ve got to the point where I dread reading the post or answering the phone… but at the same time I’m staring at the letterbox and my phone…

Waiting and hoping to hear the things I need to hear.

I want to hear “no problem leave that with me” and it actually be true. Sometimes it can ruin my day, other days it makes me do a sarcastic laugh and I will continue with my day; or even worse it can make me just ignore the problem and let it continue to get worse because I can’t bear the emotional turmoil I will have to endure.

But the best thing to do, is take a deep breath. Count to ten. Remind yourself over and over again that this might not matter in a weeks’ time. And that eventually it will be okay and you’re doing all you can.

And most importantly, think of that awesome little person that needs you to do this for them.

I’d love to hear others’ stories of red tape, or a time where things went right for you!

Oliver Does Pre-K

We are now 2 months in to pre-k for Oliver, and although we still fight the early morning rises, he loves it! Two weeks in and he stopped crying during morning drop offs, which was a huge step. I no longer spend my days wondering what would happen if he gets lost, wakes up from nap and misses me, or even worrying about him having lunch without me.

Every day that I get to pick him up from school, I am excited to hear about what he learned that day.

Yesterday he told me he learned the letter ‘F’. He went on to show me how he pronounces the letter and what word would go with it. “Ffff, Fffff people!”.  Not exactly the way it works, but it was cute none the less. So far I have heard him sing the days of the week, and even the months of the year! It truly amazes me how quickly they can catch on and learn new things.

Our school just had a new playground installed and what a blessing, we got a wheelchair accessible swing! Oliver has yet to use it (he is still getting over the fear of being the first one), but we love that this was added not only for our son but for future children to come. I would also like to share that I am so proud of how the staff and teachers at Oliver’s school have gone above and beyond to reach out to me in times of need, when they had questions, or even suggestions for different things.

I remember back in June, my husband Aaron and I were so scared to “release” Oliver in to the real world.

We were frightened that kids would not understand his disability, or only see him for that and be scared to interact with him. Above all else, we were nervous that Oliver would not adapt to being away from home for such a long period of time, five days a week. Sounds like most parents, right?

Well, like most parents we are here now with a child who has an abundance of friends, who can’t wait to leave us in the morning, and who can’t wait to come home and see us in the afternoon. Going to school has really helped my little Oliver blossom and open up in to this friendly, bubbly kid.

I am so proud that he gets to teach and bring awareness to this generation of children and help them grow in to sharing kindness with children of all ages and abilities.

Starting Middle School

Before my daughter started middle school this year, I had been having big time anxiety about it. She had a very rough beginning when she started at her previous school; it seemed not a week went by that we didn’t get a phone call to pick her up or to come and help calm her down due to her behaviors.

It took several months for her to settle in at her old school and I was afraid there would be a repeat situation this year.

Starting a new school is a huge adjustment, and for kids on the autism spectrum like Lilly, big changes or any type of transition can be extremely challenging. A few days before the end of the last school year, we went to visit her new classroom, and it went better than I had expected.

If you have ever seen the sitcom “Cheers,” the reaction of the kids in the class was similar to when Norm would walk into the bar. Excited yells of former classmates and old friends yelling “Lillyyyy!”. Lots of hugs and jumping up and down. Two of the girls took her hands and gave her a tour while I chatted with her teacher.

There are some big changes in middle school, and I had no idea how she would respond to them. There is no playground for recess. As it is a middle school area of a K-8 school, they have a blacktop; a courtyard type area where the kids hang out and eat.

They don’t have an Occupational Therapy room at the new school. This was a big deal since the OT room was her favorite place at school.

She also has to meet weekly academic goals to earn prizes. If she doesn’t, that could be a huge trigger for her. The good thing is that she will be working towards those goals by practicing at home so we will be able to gauge if she will meet the goal or not, and tweak the goals if we need to with her teacher.

Another factor to add into the mix with entering middle school is the onset of puberty, with comes with its own set of challenges.

There have been a few bumps in the road so far; it would be unrealistic to expect otherwise.

We’ve gotten a few phone calls, but three calls over a month and a half compared to three within the first week of school two years ago is a huge success in my book! Overall, it has been a good beginning of the school year.

She loves going to school and loves being with her friends. I am looking forward to watching her navigate this next chapter and watching her grow.