Paws Fur Effect

Well, things certainly haven’t been boring for us this past while.

Hubs has been getting steadilly more ill, starting with itchy skin and ending (quite dramatically) a week ago with an asthma attack. He suffered from asthma as a child, but after the age of five it had disappeared. So, long story short, after much panic and investigation at the local hospital, it turns out hubs is allergic to the dog. Allergic to the dog! We were both in a state of shock for the rest of the week, which in turn lead to R’s behaviour going downhill in terms of his anxiety and demand avoidance. Hubs visited two allergists, who both told him the same thing – if a dog allergy did not cause serious asthma attacks, it’s doable. Unfortunately for us, this is not mild. Hubs, who normally washes, walks and grooms the dog, has had to stay far away from him for fear of another attack. I, therefore, have took over the doggy duties, and am paying for it in pain thanks to my RA. My wrists are in tatters and my elbows feel like they are in a constant spasm. Also, I have been getting a lot of foot cramps in my right foot, which I didn’t realise was because I have been wearing slippers around the house and they are quite thin.

So anyway, we have to rehome our dog. I’m devastated. Hubs is completely distraught, too. But what can we do? Hubs is actually training to do triathlons and eventually an ironman. He’s been training for over a year now. So asthma is a bit of a pain in the arse when he is trying to run, cycle and swim six days a week and instead he is laying around trying to catch his breath no matter what medication he is prescribed. I have put out the word locally that we are looking for a new home for the dog, one where the owner will either have or have experience with, golden retrievers. No point in handing him over to someone who ‘thinks he’s cute’, then freaks out when s/he realises the amount of work involved. Goldens are amazing. Kind, affectionate, obedient and gentle. I mean, he manages to be around R all day every day, who is about as predictable as the weather, on his knees and not once has the dog stood on him, hurt him or done anything but love him. That’s pretty amazing if you ask me.

So whoever is lucky enough to have our beloved pup in their lives, I hope they treat him well, with all the love and care he deserves. I will miss him terribly, and it’s kind of worse at the moment because I know he will be gone someday soon but we have no idea when it will be. It’s a kind of horrible limbo.

How High?

R knows what he wants, and he knows how to ask for it. Very, very well. He also has a habit of kind of forgetting that everybody else in the world does NOT actually have to do as he says at all times. It’s probably a four year old thing, right? Right?! Anyway, one of the (many) positives of having our pup and cat are that, naturally enough, they do whatever they like. They can’t argue back. They just…look at him, like “Woah little guy, why are you so pissed? Let’s just play!” and carry on like he’s not screeching at them to follow him in a precise line while he drives his model Mini Cooper around the floor.

It’s pretty fun to observe.

R is feeling a little better today, thankfully. My wrists and fingers, however, are still alternating between extreme redness and stiffness, and a deep ache pain. I bought a working wrist splint in the local pharmacy to see if it would help, but to be honest it was more a pain in the arse. I might get a pair of arthritis gloves, the fingerless ones with slight compression and grippy stuff to help me hold a cup of tea without feeling like it’s going to drop at any moment.

We had a brief glimpse of warm weather this morning, too, which was nice. Like the true sun-worshippers we are, we all piled out into the garden and lay in the sun until it got breezy again and the neighbours were probably looking out thinking, “Oh look there’s that weird family again, didn’t they mow their lawn like two weeks ago when it was blowing a gale?”

In other news, it was my mum’s birthday today and due to R’s moodiness we had to stay home and miss the party. Maybe next year eh? For now I think I’ll enjoy a bit of well-earned quiet time with my Kindle.

Silver Lining

Today has been rough. Lots of pain for me, and a very upset R who decided yesterday to go a wee bit overboard on the 100% fruit snacks and subsequently spent most of today…well, I’m sure you can guess. So his bum is as raw as my breakfast, he’s yelling, he’s complaining – nothing is right, the dog’s in his way, the cat smells funny and by the way, Mammy, “Where is ____ (toy he has not played with in a year)?”

Let me elaborate on our snack system. I say system, well, it’s a drawer and a cupboard. R has issues with opening the actual packets of his favourite snacks, so I use little ziploc-esque pouches that can keep the snacks fresh all day, and then they are all within his reach so he gets to decide when he eats, as well as the satisfaction of opening them himself. It works well, most of the time! I think poor R has learned the hard way not to overdo it on the fruit. He’s tucked up in bed happily now with his mountain of plushies.

Since I haven’t been to see the rheumatologist yet, I have no actual game plan for RA. I know that there are a lot of drugs involved, a lot of side-effects. I think long and hard about taking paracetamol, let alone this hardcore stuff I keep reading about (I know, I know, thou shalt not Google and act surprised when you read worse case scenario!). A part of me (a large part of me) is considering battling this thing with diet, not drugs. I’ve been saving for a Nutribullet for a month or two, so I’m going to be making a lot of green juices and smoothies. A part of me wants to pretend this isn’t happening. I don’t need drugs for the rest of my life. I can do this the natural way. Well, I can at least try.

I’m scared for my future. I’m scared for R’s future. I’ve been enjoying this mostly peaceful, unschooling life we’ve been leading this past year, away from interfering and judgement. Now I find myself wishing we could teleport to some warm climate, so I have a chance to not spend three quarters of the year in some level of pain. I’m also angry. Angry that this happened to me. Like I don’t have enough on my plate! Hubs is out swimming, cycling and running several times a week and I’m at home, feeling sorry for myself and wondering if I’ll ever be energetic again. I know I will be, but sometimes a pity party just happens. I tend to let myself have a wallow for five minutes, then make a cup of tea and go hug my son (or the dog, who just turned one recently). I may not be able to go for long walks at the moment – or grate carrots – but I can still read twenty books to R in an hour. I can still be there for him. It will get better.

Keep On Keepin’ On

I apologise for the quiet once again. Unfortunately, my RA (rheumatoid arthritis) is in full scale flare at the moment and typing or even just picking up a pen is very difficult and painful. My GP has referred me to a rheumatologist however the waiting list is at least nine months! So, I’ve been fiddling with my diet, trying to get as much goodness into me as I can whilst also doing all the usual with R.

Speaking of R, we have had a major breakthrough on the potty ‘training’ front! As you know, R has a lot of major issues with his digestive system and it has lead to a difficult pattern of holding in his poop. Well, two weeks ago I asked him did he want to sit on his mini toilet and, much to my surprise, he said yes! He sat there happilly watching surprise eggs on YouTube until he did the deed. Not gonna lie, I had a happy cry when he wasn’t looking. I’m so, so proud of him. He has since gone several more times on his little toilet and although I know he is a long way off fully using the toilet, this is the first positive experience for him in his life!

Shifting back to RA – it sucks. Seriously sucks. I’m finding it very hard to do everyday things, and even harder to admit that and ask hubs for help. R needs lifting at certain times of day, like into the bath, on and off the toilet, and my wrists are very badly affected at the moment so it hurts. I feel helpless for the first time since R’s diagnosis and I don’t like it. I’ve always been able to see the light at the end of the tunnel so to speak, but RA is not something a pill or a dietary change can cure. In fact, a lot of the pills the doctors push for RA have scary side-effects. I’m not a fan of taking pharma drugs for ailments in general, let alone ones that list things like ulcers, liver damage and kidney failure as a possibility!

One of the biggest breakthroughs I have had regards to R’s behaviour was recognising when to intervene and when to just stay quiet and observe. Sometimes he’s in another room, and I can hear him getting more and more pissed off with a toy/the dog etc. He kind of rants to himself, for want of a better word! Anyway, I have found that most of the time if I go in there asking does he need any help, he’s ten times more likely to meltdown over said problem. If I stay put and listen, he’ll either get over it or come in to me and ask for help himself. Much nicer for all involved! Of course, where safety is concerned there’s no question I’m there and I’m interfering whether he likes it or not, but for the daily grind, sitting back and waiting is far more beneficial. I’m all for letting him work out his own problems unless he specifically asks me for help. R also has a habit of asking me questions all day about a particular thing, for example this morning he kept asking me if two model cars had the same bumpers. He knew they did – he’s asked me a thousand times before! But he always asks. Now, some people may say it’s him seeking reassurance. I thought so, in the beginning. But honestly, when I end up answering obvious questions 12 hours a day and he’s melting down if I don’t answer correctly, I draw that line. I’ve started asking him what does he think/why don’t you have a look and see etc. He got annoyed at first but I think he’s starting to get it. Mammy is not an automatic answering machine with only 7 buttons!

That’s all for now folks, my hands are killing me. Have a good one!

Tummy Troubles

When kids get a bit of a tummy bug around these parts, you are usually advised to do the following: keep their fluids up, feed them lots of plain food, and make sure they rest. What do you do when your child refuses to touch let alone eat anything resembling plain, easy-to-digest food? When they are awake pretty much all night for a week, never mind actually resting during the day?

I hate when R is ill. Not that any parent would enjoy their child being ill, I know, but it feels all kinds of horrendous when you have no choice other than to make him comfortable and wait it out, administering Calpol at appropriate times, pacing his bedroom at 4am (again), making car noises to comfort him. Not going to sugar coat it – I’ve been up to my elbows in crap this week. Hubby and I have had a bit of a cold, but no other issues. R has never been one to catch bugs and stuff, thankfully since his NICU days he has been very healthy apart from silent reflux. So, when he does get sick, I of course end up a nervous wreck, Googling symtoms at various intervals whilst tag-teaming with hubby for naps.

On the plus side, this week we have had a lot of fun painting and decorating giant cardboard boxes. R went completely off art of any kind after his two weeks at a specialist ASD preschool last September. He literally refused to pick up any pencil, marker, paintbrush you could think of. I tried everything, and eventually it emerged that he had been constantly corrected for, get this, drawing outside the lines. Drawing outside the lines?!

I’ve never been a perfectionist. Not even close. Hell, if we get through a day without a meltdown or a 10lb model car flying through the air towards my head I tend to celebrate! All through R’s childhood we painted and drew pictures. His playroom walls are covered in them. So, after he told me about teacher and her beloved lines, we had a good chat about how it was, in fact, perfectly fine to draw outside said lines, which myself and hubby demonstrated many times over the following months. Only now, this week, has he finally been up to doing it himself. So now we have a tonne of glittery, painted boxes if anyone’s running short!

It genuinely baffles me how so-called professionals can be so callous, uncaring and ignorant. And people wonder why so many are choosing not to send their kids to boot camp, sorry, school. Now, off to chase my little guy around for another nappy change. Have a good one folks!

Clarity as Spring Closes In

So..It’s been a while! Life has been very busy. We had a lovely, peaceful Christmas with minimal stress and maximum fun as a family. My hubby has joined the local running club and tomorrow he’s taking part in his first 10 kilometre race! I got diagnosed with rheumatoid arthritis last month, after eight weeks on my hands steadilly growing more painful and stiff. That was quite a blow to the system. It would be easy to assume my body’s auto-immune system has a grudge, hahah. I was diagnosed with coeliac disease a year after R was born; apparantly trauma can bring on these sort of things, activate something or other. A trigger I guess is what I’m trying to say. Anyway, hands in agony and a blog do not go well together. I decided, rather than face a life of trying this and that steroid, all the non-steroidal anti inflammatories etc. I would at least try to help myself through my diet. I’ve been very careful with what I put in my body since the coeliac diagnosis, but this time round I was eliminating dairy and refined sugar. Going full-on vegan.

After a month of veganism I can honestly say I’m doing so much better. My hands and knees and wrists still ache, but my energy levels are so much higher and an ache is a lot better than not being able to bend the joints much at all! I don’t mean to come across as preachy, so forgive me if I do. I’m a big believer in “different strokes for different folks”.

Now, on the R. R has been making HUGE progress all across the board these past two months. The biggest of which was definitely when, out of the blue one day, he stood up unaided using an old baby walker and proceeded to walk around the house! There were quite a few shocked, ecstatic tears all around! He is standing against the coffee table and declaring “Look Mammy, no hands!” a lot too. His vocabulary and reasoning skills have taken another huge leap. He asks “Why?” at least 1,000 times a day. He still loves wipers. We recently started with a new ASD service for SLT and OT (speech and language and occupational therapy). We were hopeful they would work with R using his logical thinking and natural friendliness to achieve goals we had outlined to them. Unfortunately, they completely ignored our request for a non-ABA-esque approach and after an hour R was done. A few days later and he is still all kinds of angry. He resents being manipulated and controlled using schedules, sand timers and the like. It has never worked for him. The worst thing is, since the appointment he has started hitting his head when he gets angry. This behaviour had started last September, when he was around out ASD kiddos (not to blame them, obviously, but he clearly seen a lot of self-injurious behaviour, as did we when we dropped him off each morning for the two weeks he attended). It makes me so angry at these stubborn people, and so sad for R. He deserves better. Every child deserves to be treated like a person, not trained to comply.

Needless to say, this has been an eventful week and I’m sure tomorrow will be just the same. Here’s to a peaceful weekend!

King of the Wipers

Intentions and Reasoning

I’ve been doing a lot of thinking over the past few days about the blog, what I hope to achieve and how. Realistically, I don’t have much of the mythical creature known as “free time”, so text posts aren’t going to be something I can do every day. I do, however, take a metric tonne of photos and I’ll probably upload them along with a little insight into our day. R is not a placid, easy-going little guy! He insists upon your complete attention more often than not, even if it isn’t always possible. He struggles a lot with perseveration. Anxiety rules his little mind, and there are days when reasoning with him to sit down and have a meal is a huge victory.

Today we had a rare good day with R’s digestive issues, so we decided to take full advantage and go out as a family. I asked him was there anything he’d really like to do, to which he replied “I would like to go to Duck Land, like on Peppa Pig!” So, off we went to Duck Land – aka our local duck pond, armed with a loaf of bread and some snacks. R never wants to hold or throw the bread, no matter if it’s toasted (therefore drier) or fresh. We always ask, he always says “How ’bout Mammy will do it?” Also, ducks are loud. R says they’re “obnoxious”, hahah!

ducks are loud

Duck Land went really well, and afterwards we went for a long walk along the sea shore. Then the skies opened, and we all threw on some rain gear, ran with the buggy to the shopping centre, and rode the elevator for a little while. R loves it, me not so much. Always gets my stomach churning! When we got home, as is usually the case, R gets a snack and retreats into his playroom to chill out and watch some car videos on YouTube. I started prepping the dinner, and he came in looking pretty upset, telling me how he didn’t want his snack, it fell on the floor and he would have another one tomorrow. I realised he was about to melt down, picked it up for him, but to him the damage was done, so to speak. He carried on repeating “no, I don’t want a snack, it’s too late, it’s gone!” Eventually, I got him to look at me, at his level as he is on his knees on the floor, and said “R, would you like another snack or would you like to wait ’til tomorrow?” Choices always work better for us than demands, as to me this is quite useless – he’s overwhelmed as it is!

To my delight, he snapped out of it, smiled and said “I will have another snack now, YES PLEASE!” So he got a new snack, I high-fived him and told him how proud I was of him, and he had made a good choice for himself. In truth, I was genuinely shocked it had worked! The choices method does work well for him but sometimes, especially where an accident has occurred, it’s next to impossible to dodge a twenty minute screamathon (complete with door kicking, at the moment, oh joy).

So, I’m sat here nursing my mug of tea, exhausted, and marveling at R’s progress. It’s those little moments that I seek out in my mind when we are all running on empty, wondering how to deal with a new behaviour. How’s your day been?

Regarding R – A Little Backround

This has the potential to be a very long post but I’ll try keep it basic, since it’s late, I’m tired and the clocks are going back tonight therefore I will be getting up ‘an hour early’, so to speak. R does not believe in Daylight Savings!

My pregnancy with R was relatively simple at first. Lots of morning sickness, a strange love of cold garlic bread. Then, at 30 weeks, a routine doctor’s visit turned into a hospital admission for pre-eclampsia. My partner was in the UK at the time, visiting his family, and the hospital is an hour and a half from our home town. After a two day stay, lots of blood pressure meds, two steroid injections and a bucketload of pregnant lady tears, R’s heart rate plummeted at 6.30am. I was whisked off to the operating theatre, where I was quickly anaesthetised for an emergency caesarian section. R was born at 7.01am, weighing 3lbs. I woke up completely confused hours later, and so began the long, painful NICU journey.

R required help breathing at first, then some phototherapy for jaundice, and a feeding tube. It was establishing feeds that presented him the most difficulty. He brought a lot of it back up. We were told this was relatively normal for preemies. Kangaroo care, first bath (we got to watch a nurse do it as there were too many wires), first bottle. Pumping around the clock. No sleep. We woke up, we caught a bus to Dublin, we stayed with R ’til late, then a bus back home again. After nearly two months, R was discharged. We were ecstatic, but terrified. I remember bringing him into our home and just staring at him, asleep in his carseat, thinking “What do we do now? How do we take care of this tiny, tiny little baby ourselves?!” Panic. Then joy as he woke up, not crying really, it sounded closer to a sheep if I’m honest, a little bleating baby boy who loved to sleep all day and stay awake all night. Those first months flew by in a blur of sleep deprivation, anxiety and moments where it would actually hit me that he was here, he was my son. I was his mother.

We had been told from the beginning, to expect him to meet milestones later than his full-term peers. So at first, we brushed it all off. Not sitting up unaided? Yeah, but he was so early. Not holding his bottle? Preemie. R did not sit unaided until he was one year old, and it was then we began to see professionals look slightly worried. He was not weight-bearing on his feet, at all. When we held him up, he would tuck his legs up towards him and cry. He suffered terribly from silent reflux, so we had always assumed that was why he hated tummy time with a vengeance. Suddenly, we were filling in forms and being referred to early intervention. It was only when R was 18 months old that intervention actually, well, intervened. R met his first physiotherapist. Nothing worked. We got another physiotherapist, who was also stumped by his strange mannerisms, sensory defensiveness and lack of physical progress. R’s first occupational therapist diagnosed him with sensory processing disorder, at two and a half. By this time, R had never stood unaided, but could pull himself to stand on furniture. He could cruise a little, too, but only right up on his toes. Most of the time, however, he got around on his knees. He bum-shuffled for a month but quickly realised his knees were faster. Lots of face-planting. Lots of cuddles.

By the time R was nearly three, my partner and I knew he had autism. He flapped from the tender age of six months whenever he looked at things like spinning wheels, birds, etc. He had to have everything a certain way, particularly when it came to things like leaving the house, mealtimes, bedtime. Naps ceased at the age of two, straight away. He just didn’t need that much sleep. I do count my blessings, though, as he does sleep well at night most of the time (touch wood!). There were other issues, too. R never progressed passed mashed food. He could not stand to be near, much less touch or eat, anything wet or slimey. You’d be suprised how many foods this encompasses. So, there we were with our two and a half year old son, fighting for an autism assessment, completely clueless as to how we could help him to cope with everyday life. I’m not going to mince words – R screamed a lot between the age of three and four. At one point I was prescribed ear buds by my doctor as I had a double ear infection and the screaming was literally hurting me. R’s meltdowns ranged from issues such as water spilled on the floor, to an unexpected guest, to the sun going behind a cloud when he wanted to play with his toy car in the sunshine on the tiled floors. Family and friends wondered why we couldn’t just bring him over to visit. We wondered would we ever leave the house again without an hour of prep, a packet of toddler crisps and arranging everything just so.

Honestly, after the initial SPD diagnosis, everything kind of blurred again. Lots of a therapy appointments, lots of physiotherapy trying to stretch R’s hamstrings and achilles tendons so he could stand flat-footed. Nothing worked. He got diagnosed with ASD just before his third birthday. We cried. We wondered what we could have done, was there anything we could have done at all. Then we got angry that we were not getting enough information, enough help from people who were supposed to be helping. And then, we turned to each other and realised we just had to tag team it up, work together and keep our heads above water whilst we figured it all out. Or tried to. Slowly, very slowly, we started to learn how to manage autism in our lives. How to predict a meltdown, when to just step back and let it happen and when we could have a chance to step in and redirect. We got a cat, and then a dog. R loves animals, and we like to joke that they are our living companions-slash-sensory-pets. R is very much verbal. He has huge, huge anxiety issues that hinder him in many ways. He doesn’t do suprises. We don’t use visual schedules as they actually made his anxiety worse. R has major digestive issues, and is on a dairy free diet. Due to the enormous trouble going to the toilet, he is not toilet trained. I know he’ll get there when he’s ready. We have been waiting to see a GI doctor for nearly a year to find out if something is affecting his bowels. We tried a specialised ASD preschool and after a few weeks of constant meltdowns, no sleep and barely any food in his tummy we made the decision to educate him at home and haven’t looked back. He has been a lot happier ever since. Educating him at home is exactly what he needs. If he has a stressful morning, we can just chill and do some learning in the afternoon. We go out as a family to places that interest him, as well as the usual grocery runs. We get involved. We all share our interests and if R decides he wants to learn about Chevrolet wipers, we will make sure whatever encourages and aids his learning is easy for him to access. We do the best we can. R has a self-propelled wheelchair as well as a buggy. I have no idea if he will ever walk unaided, feed himself etc. etc. but one thing I do know is he has been through more in his short four years of life than I ever could have imagined when I sat crying with happiness after discovering I was pregnant.

Sorry this post is monstrous! I promise I don’t usually have the energy to write so much but I want you all to get a good insight into our lives before I delve right in with the everyday hustle and bustle.

An Inroduction of Sorts

Hello! And welcome to our little corner in the blogging world.

We are a humble little family of three, plus one energetic dog and one downright malevolent cat, living on the east coast of Ireland. Our son, henceforth known as R, has been diagnosed with ASD (Autism Spectrum Disorder), SPD (Sensory Processing Disorder) and we are awaiting confirmation of CP (Cerebral Palsy). R is four years old and probably the funniest, most loveable little guy you’ll ever meet. He has plenty of personality and currently loves (and by loves, I mean lives and breathes) windshield wipers, Peppa Pig and Volkwagen Golfs. In no particular order. He enjoys bubble baths, muddy puddles and indepth vehicle tours on YouTube. Never a dull moment in our house, I can assure you!

I created this blog to share our journey with R, and hopefully shed a light on what it is like to live with, nurture and love a child with complex needs. We strive for happiness, not perfection. Smiles, not scores. We love R for who he is, not what he has. We homeschool. We play a lot. We cry a lot, but we laugh more. We laugh more as we realise that life is much more than therapy appointments, missed milestones and shoulda, woulda couldas. I will add more in the coming days, including a post on our journey so far. In the meantime, thanks for reading!