Bringing Ethan to a playground when he was younger was always a task. We tried hard not to bring him to the same park, as he felt if he played with it, he owned it.

But alas, good nearby parks are few and far between, we did spend time and probably too much time in one particular playground.

Yet, he liked going to different playgrounds yet he didn’t.

He liked discovering, but he liked routine.

It was always a guessing game with Ethan and one I miss terribly.

Let me explain.

He walked over to me and whispered incoherently into my ear.

His speech was never crystal clear but he always made sure he was understood, one way or another.

His chubby curled fingers prodded my shoulder as I tried to pretend I understood him.

He knew I had no idea what he just said to me. I knew I was beginning to piss him off.

I stood up. “Show mom” I said as I placed my hand in his.

“I show you” he dragged me in the direction of some small children playing in the sand pit.

Oh, please let this not happen again my mind raced as the parents sitting around the sandpit watched me being frog marched over to their children.

“He did it” Ethan pointed to a (roughly) four-year-old child.

“Ok, Ethie” I said rubbing his hand, hoping I could escape or at least divert a meltdown.

I bent down.

“They are playing too, you can play right here” I pointed to a little spot in the sand pit.

Ethan at this stage of his life was very much a routine kind of boy; if he played with a certain thing in a certain playground, it was officially his, of course unofficially it was not his; but try as I might, Ethan never accepted this, he suspected I was lying and often accused me of this.

“I won’t, leg him go” he spat.

I now had an audience, we were far more interesting than a mobile phone or filling a bucket with sand; well, to the adults at least, the kids and the boy in question didn’t even bat an eyelid.

“Ok Ethie. Mammy and Ethie go slide.

Then we go swing.

Then we play sand.”

I could feel my face beginning to get hot.

“No!” He yelled and went to give me a smack with his little chubby hand, which, by the way, can hurt but thankfully, I was well rehearsed in dodging and predicting such slaps. It didn’t land. “Liar, you liar”

He then kicked me, which did land and did hurt.

I heard the tuts. Not again…

I could feel the embarrassment burning up through my body. Making me itch. I felt like a worm squirming while under a microscope.

“Leg go!!” Ethan roared while pointing at the boy. I was holding his arm preventing him from going over to the boy and shoving him off the digger which was in the middle of the pit.

Ethan had at that time and still does actually, have no sense of danger. He would have rugby tackled that little boy off that digger without a second thought; then he would have wanted to kiss him better after his fall.

“Ethan, you next” I coaxed him, hoping the mother of the boy might feel a full half hour on the digger might have been her boy’s fair share of the toy.

“Bill*iox off!”he roared, the more mad he got, the more his speech became mumbled, “Bog off!” “Billa him, Fu**s you, fug off all every!”

Ethan spat.

“My turn!”

“My turn!!”

I sat on the bench with a squirming Ethan on my lap, right beside my audience.

I am not spending the days my son can walk, talk (even use swear words) and show his feelings, apologising for him, despite how unreasonable he was being. 

I will not lie, the tension was tough, or so I thought.

They began to talk again amongst themselves, not a word could I understand.

I looked at them.

I began to smile and even let a giggle out. Had they any clue what Ethan had just said? Did they even understand it?

They stopped talking again. They shook their heads while I sat there smiling like a Cheshire cat.

I was no longer embarrassed and so caught up in that feeling that I hadn’t even noticed Ethan gnawing at my hands, legs kicking out and head swinging so hard trying his best to connect with mine but even in my aloof mood I was moving my head out of his way.

I smiled at them.

I nodded towards the digger and said “He really wants a go on that” again I pointed.

They looked at me bemused and all got up, got their buggies and their kids and left.

The boy however was still there. Really?

I stood up and walked over to the ship part of the pit and reminded Ethan of how much fun this part was.

He agreed and spent a few minutes going up and down the slide.

I glanced around the area near the pit and wondered who that boy was with.

I heard a deep voice behind me. “Your little man has a mouth on him eh?”

I spun around.

I smiled and shrugged my shoulders. “He does”. I will not apologise …I will not…

“Gotta say, kinda glad my little man…” he nodded towards the digger fun child, “has a hearing issue” he smiled. “Sorry, I was on the phone, I will get him off the digger now for Ethan”

“Thanks” I grimaced. “Am, Ethan wears aids too “I blurted out.

“I see that!” he laughed, I followed his gaze, Ethan was currently sending his aids down the slide.

“Oh, for…” I stopped myself.

“Nice to meet you both,” he smiled and walked towards his son who was now coming off the digger off his own accord.

“Ethan want digger” I pointed to the now empty sand pit and free digger.

“Pid off” he smiled and ran towards the swings.

At the time, I was embarrassed but looking back this story makes me smile, I hope it does for you too and that you remember that even if you’re embarrassed and your child is ‘acting out’ to the untrained eye, at least they aren’t cursing like a sailor, eh?

And if they are, you can always act like you don’t understand them or that it’s your first time hearing such language too.

Life’s too short, eh?!

Here in Texas, our summer kicked off in June (end of May to be more exact).

I will be honest, I was pretty nervous with having to deal with Oliver’s therapy sessions, doctor appointments, getting my at-home work done, all while finding activities for all of us to enjoy without hearing the “I’m bored” spiel.

With three boys, none of these tasks come easy during the school year, so with all of them at home with me, it was frightening!

Luckily, I had baseball season coming to a close for two of my oldest (Aaden and Oliver), so I was able to mark Taxi driver off the list. Lol!

Usually, for the summer, we take each day as it comes. I get a feel of what each boy might want to do and take a vote from there.

With them at such different ages, this only proved itself to get harder for me. One would want to stay home and play video games, while the other wanted to watch Blippi on YouTube.

So, I took to social media and actually found an awesome idea. A Summer jar!

What I did was use a recycled spaghetti sauce jar and taped a label to it that read: SUMMER BUCKET LIST.  Inside, I filled it with all kinds of activities from extravagant to small on small pieces of folded paper.

Every morning when the boys would finish their breakfast, they would each get to pick one piece of paper from the jar. If it was doable for the day, we would add it to our list!

Some of the activities were: watch a thunderstorm, go to the beach, watch a rainbow, etc; so, they were not always an option that we could get done for the day.

But every morning, the boys would wake up and be so excited to see what we could do for the day.

I also want to brag about a smart move on my part, because we all know that we can do this and that with our children but at the end of the day they will act or say that they did not do much.

To save myself from that problem, I printed out a blank sheet with the title, “SUMMER 2018” and I would tape all these individual pieces of paper that we accomplished to it.

Our list is ever-growing, but currently reads activities we have done such as: go swimming, go to a water park, go to a baseball game, make tie-dye shirts, play bingo, camp in the living room, go on a road trip, and so much more.

It has only been one month into our summer but being able to put aside the tablets and electronics and build our relationships on these activities has been worth more than words can express.

Got any special summer plans with your kiddos? I would love to hear about it in the comments below.

Happy sharing! (:

Participation has always been a tricky issue for our family. When our kids were really young, most of our family excursions ended in frustration and tears (sometimes mine).

I would feel like a total failure when I would see pictures of friends on social media doing things that included the whole family.

Pictures where the kids were actually smiling, no one was having a meltdown, and it looked like everyone was having a good time. I feared that we would never get to that point.

In time, I began to realize that every family situation is unique, and each journey is different. Sometimes you just have to think outside the box and do what works for you.

Although the excursions have gotten more manageable as the kids have grown older,  there are still a few things that two of our kids can not physically do, but we have found ways to work around them.

I have also found as far as participation goes, it’s the little things that can mean a lot.

Our daughter Lilly has had a feeding tube her entire life. She is now at the point where she can drink liquids, but can not eat anything more solid than baby food.

Despite this, she has always had a place at our dining table so she can join us at meals. Whenever we get treats for the boys (cookies or a little candy), she gets one as well.

She may not be able to eat it, but she  gets as excited as her brothers because she is able to be part of the fun.

When she started her last new school, there was an issue at lunchtime; she was having a meltdown, and no one could figure out why she was so upset.

It turns out that the new staff saw her feeding tube and assumed she would not need a lunch tray because she couldn’t eat anything on it anyway.

They were 100% correct, but Lilly was still upset because she wanted to be like the rest of her class. She felt out, and her feelings were totally justified.

After brainstorming a solution with the school staff, she now gets to select a couple of items to put on a tray at lunch so she can feel included. It’s a simple resolution that works for everyone!

Our youngest son Chance has a tracheostomy tube which puts a limit on family activities we are able to do.

He can’t go in water deeper than a couple of inches, so classic summer activities such as going to the lake or into a swimming pool are out of the question.

We did take the kids to a beach last winter so they could see the ocean, but (luckily) he was content to dig in the sand and showed little interest in the water.

At home, he loves the sprinklers and his water table for cooling off in the 100+ degree heat that is typical of summers here in Northern California.

It’s a small compromise that brings a lot of joy and hours of fun for him and his siblings.

Chance also has chronic lung disease, which puts him at high risk for respiratory infections during cold and flu season.

When he was a baby, it was easy to keep him isolated in the winter. Now that he is an active seven year old- not so much.

It’s hard to find a balance sometimes, but now we take it on a case by case basis and  weigh the risks and benefits of taking him out somewhere.

If it’s not worth the risk, we divide and conquer so one of us can stay home with him.

It tends to be quite rainy here in the winter so we do a lot of indoor activities with the kids where everyone can join in; board games, arts and crafts, and cookie decorating.

Lilly may not be able to eat the cookies, but she has no problem licking the frosting off the spoon!

It’s been said that we can find joy in simple things and as far as finding ways for our kids to participate in some fun activities, we have found this to be absolutely true.

Sometimes it’s just a matter of coming up with creative alternatives, but the end result is definitely worth the effort.

A couple of weeks ago we were at our local hospital at an appointment and he needed his nappy changed.

I found a disabled toilet but there wasn’t a changing station in it.

I asked two members of staff if there was anywhere suitable to change my son’s nappy – they both pointed to the toilet I had found.

I told them that there was not a changing station or anywhere suitable in this toilet for him to lie down so that I could change his nappy and asked, “Is there was somewhere else?”

One of them said, “I’m sorry I don’t know and I’m with a patient right now so I need to go.”

The other person I asked said that this was the only option available for us…

NO ONE should have to change their child on a dirty toilet floor – there should definitely be better facilities than this!?

If there was already, then, ALL members of staff should know where they are so that they can direct people.

So, I posted this on Wilson’s social media pages and it got a few shares.

It was on one of these shares that someone commented saying these words exactly…

“Needed his what changing!? He looks about 7!!!”

My son is 2 years old, but that’s not the point…

It was quickly pointed out to him that he had a disability to which he replied “Oh, my bad.”

Excuse me?!

Are you as annoyed as I am right now?

Because whether he has a disability or not, whether he is 2, 7 or 70 why should it matter that he wears a nappy?

The point I was trying to make was that we need more changing places!

Even though most of us with children that have additional needs already know this.

But it made me realise that not only do we need to raise awareness about the lack of changing places but, also, that there are children past the age of 3 that still wear a nappy!

My son is still young but since he has cerebral palsy effecting all 4 limbs and can’t sit unsupported, I have no idea how long he will be in nappies for, my daughter had been potty trained by the time she was the age my son is at now.

Is that a problem?

Absolutely not!

Should I be worried or concerned?

Well, believe me when I say I have bigger things to be concerned about than whether or not my son is out of nappies!

It’s upsetting that people are so judgemental and this is why we need to raise the awareness, to educate people.

There are some people who may have never been with or known someone with a disability – they would genuinely not know about some situations we find ourselves in with our children!

This is why social media is great!

People are scared of the unknown so let’s make the unknown known.

Let’s educate.

Let’s make people aware.

Let’s make a change.

For those of you who have followed our journey, I have some exciting yet nerve wrecking news.:

Oliver starts school in August!!

Sure, it is only nerve wrecking for his father and I, but exciting nonetheless!

We had gone through an evaluation for PPCD (Pre Preschool for Children with Disabilities) sometime around April of 2017, but were denied any services due to Oliver not being cognitively delayed.

It sure did not sound like the right response, so I finally got on call with everyone for a second in-person evaluation.

Oliver does have some delays, but most are due to physical reasons (ex: not walking), so it is sometimes hard to see that he should have some extra support mentally as well.

To my surprise, after the evaluation, we were offered a program for him!

It is much like a regular school pre-k, and in fact does take place at the elementary right by our house.

I met with the principle, his teacher and coordinator to discuss a program implemented by them for physical concerns (teaching staff how to Cath Oliver, food aversions, etc) as well as discuss goals we had for Oliver cognitively.

It is so exciting to see the school working with me to make sure Oliver’s first year at school flows smoothly.

I am one nervous momma, and I am not sure he knows entirely how school “works” like me having to leave him, but he is excited to make friends!

This boy has blossomed with me homeschooling him up to his four years of age, and I can only imagine how much further he can go with this program.

One thing this has opened the door for, is me being able to get back to work in the real world.

For almost two years, after an almost 3 year hiatus, I have been working from home.

This has been a blessing, sometimes in disguise, allowing me to spend all the time I can not only with Oliver but my two other children as well.

Getting back into full time work outside of the house has this mommy with first day jitters too!

Hopefully we can both adjust nicely and it should only provide more love and hugs when we return home to each other at the end of the day.

Do you remember your child’s first day at a school?

I would love to hear about it, in the comment section below!

Oliver is set to start late August, and he will be a full-time wheelchair user at that time.

Our biggest fear is him being able to adapt to the surroundings, being independent, and of course other children being kind to him.

Any positive words would be very much appreciated!

Watching all my children play together made me see how wonderful children are.

My son was born with a hearing problem but if you studied him you would never know.

You would see that sometimes he can’t hear you in a crowded room or if you are behind him, but on the whole he has compensated really well.

My daughter’s condition has given her some skeletal abnormalities such as scoliosis and her ankles make her feet turn in, mixed in with her hypotonia means that walking is something that she really struggles with, and yet for 3 weeks she has been walking.

She doesn’t walk properly, but she walks in her own little way, even if she gets exhausted and collapses a lot.

Their siblings don’t say a word about them being different and are extremely protective.

They will help them in so many different ways.

My son due to his sensory issues couldn’t stand being sticky or muddy and yet because of his siblings helping him with craft and play-doh, he can now play and get muddy and sticky like other children.

He doesn’t feel completely comfortable with it however he loves digging for worms and woodlouse and these are things he would never have been able to do without the help of his siblings spurring him on and adapting.

Children seem to be able to adapt so well and yet as an adult I feel like I am so slow at adapting.

I am trying to remember so many different things.

I am trying to play with toys in different ways which will help develop my daughter’s skills better than the conventional way of playing with them.

I am trying to remember not to touch my son’s bed while he is in the house, as he has a meltdown.

I am trying to remember not to say specifics to my son, such as I will be a minute, put your toast on the kitchen side, as he will expect me in exactly 60 seconds and will have put his toast on the kitchen side and the plate in the sink.

I always thought that as the adults we are meant to teach our children everything, especially life skills.

Yet here I am hands up in the air saying that actually my children are teaching me so much more then I could teach them, and for this I am eternally grateful to them.