What’s worse, they have definitely seen me struggle in to preschool with my son and daughter, pushing the wheelchair, desperately trying to juggle two ruck sacks, two book bags and two lunch boxes along with a huge potty chair and all the while trying to make sure my daughter doesn’t let go of my hand in the car park.

On numerous occasions!

Yet they still think it’s acceptable to park in the disabled bay without a blue badge (or a disability).

The blue badge sign is very, very clear and at eye level when you park, so there is no way they are unaware of what they are doing.

What’s even worse is that the times that I have seen this person parking there, the car park has been pretty empty! Not that it would be an excuse if it was full (I would still be fuming).

It’s just pure laziness and complete ignorance.

No sensible, caring, intelligent person would do this. The icing on the cake is that she is a mother.

She is a mum of a little person the same sort of age as my disabled boy.

Yet she has never thought to put herself in my shoes and think what it would be like if it was her beloved child that she had to watch suffer and struggle every single day!

For that, I can’t forgive her.

She is not a nice human being. So when I wrote the note for her (in black eye-liner, fittingly on the back of a letter from the NHS for one of my son’s physio appointments) I started it with: “I have reported you for repeatedly parking in the disabled car parking spaces without a valid badge. Please stop parking here.”

But there was a bit of room left at the bottom of the paper.

And I was so angry I couldn’t help but scribble “ARSEHOLE” in big, fat, capital letters.

Then I felt a bit guilty.

Then I felt ridiculous for feeling guilty. Then I felt annoyed with myself for not putting something far worse than the A word, but all the while I was shaking feeling like I was the one that was in the wrong.

Which is crazy I know, but it’s how people like this woman make us feel and that makes them even more despicable.

I haven’t seen her park there since (pats self on the back).

I regularly feel like she gets neglected.

Obviously I am not talking in a ‘call the Social Services kind of sense’, but neglect is definitely how it feels.

Every time she asks me to play snap, if she can play hairdressers, or if I can read her a story, her brother will call out, need moving, need taking to the toilet, need help with something!

So I say: “Sorry, I can’t right now love, I will in a minute.”

And then that minute never comes.

Life with Hadley is all consuming.

And that is not his fault.

He is not trying to take me away from his sister.

He needs me, and it’s my job to be there for him.

I want to be there for him. But I find myself resentful sometimes.

I don’t resent him, but I resent what it could have been like.

I resent whoever it is up there that makes the decisions, for not giving me two beautiful healthy full term babies that I can equally divide myself between.

And so I cry myself to sleep for both of them.

Wishing there was a way to cure Cerebral Palsy and fearing that my little girl will grow up thinking that I didn’t care about her as much as her brother.

That she wasn’t as important.

This makes me feel utterly hideous.

Sick to the stomach.

This little girl is everything I dreamed she would be.

She is beautiful, caring, hilariously funny and so popular.

And I feel like I never see her.

She (and I) are so lucky in that we have lots of friends and family that regularly spend generous amounts of one-on-one time with her, and she loves them all so much.

But I want to do those things with her. I want to be the one that she laughs with and talks about all the time.

I want to be plastered in dodgy eighties make up and nail varnish that covers my entire hands (she did this to my dad!).

But the reality is that I only get to do those things occasionally when somebody else takes on the main care role for my son.

Or when he lets them.

Don’t get me wrong, we spend a lot of time all together as a family, but that’s not the same.

This is not the way I had things worked out.

This is not what I wanted.

And it’s my aim this year to ensure that things have less and less negative impact on her. And me!

We are sneaking days out together.

We went for a cream tea for my birthday a couple of weekends ago and it was lovely to sit and eat with her (and the girl can eat! She’s definitely mine!).

We also went to the theatre to see The Sound of Music (her favourite musical) and it was marvelous.

We sat munching popcorn and singing along at the top of our voices. It almost reduced me to tears. This is what I wanted life to be like for her. And us.

Tonight as I tucked her in bed and thanked her for being such a good girl and told her that I loved her more than anything, she replied: “Thank you for being such a good mummy.”

The lump in my throat felt like it was going to explode.

I hope she really believes that.

I wish more than anything that nobody else has to go through what we did.

But I hope that by telling it like it is, it may help somebody else who has experienced this kind of trauma, to feel less alone and less guilty (because no matter how much we tell ourselves it’s not our fault, we can’t help but take the blame for causing our children’s disability in some way).

And it might just help somebody notice the signs of pre-term labour. Because in my situation, I’m not sure the docs really thought the babies were actually going to arrive!

I was expecting twins and I knew there was a chance of them being early, but I had no idea what that really meant.

At 27 weeks and 2 days gestation I woke up at 5am thinking I had a leaky bladder. It didn’t seem like my waters had broken as it was just a trickle, but something inside told me to call the midwife. 

Plus I had a friend that had just had twins at 27 weeks, so I knew it could happen.

The midwife told me not to worry, but to come in to hospital to be checked over in my own time.

In fact I think they actually said “have a cuppa and wander in when you’re ready.” Very relaxed. So I didn’t worry too much.

A couple of hours later, after the initial lack of concern, my consultant confirmed that Twin 1 (my daughter) had ruptured her membranes and it was amniotic fluid leaking out, not urine.

After a scan, they told me they would try to hold off labour for as long as possible (hopefully several days or even weeks) as the fluid was only leaking slowly and was replenishing itself.

All very surreal, but I was being told not to worry so I tried not to.

Skip to a few hours later and I’m having huge contractions! But nobody believed me. They said the monitors didn’t show I was in labour at all.

HOLY CRAP! They were beyond measure. But having never had a child before, I presumed I was just being a wimp and it would pass.

They did however give me steroids (to help bring on the babies’ lungs, but they were very reluctant to do so as they still didn’t really think I was in labour.

After a few more hours I told a very nice nurse that popped in to check on me that the paracetamol I had taken really wasn’t helping (as politely as possible) and she looked at me and said: “Don’t worry. I can see that this is getting more complicated. I am going to speak to somebody and get you transferred. You can’t have these babies here! (they couldn’t take pre-term babies before 30 weeks at my local hospital).

Ok, so if I’m honest, I really started to feel a bit shit by this point and this was the only person who seemed to understand what was going on.

I was worried.

Skip half an hour or so and I’m in an ambulance that is winding in and out of heavy traffic with sirens screaming, having mega contractions every few minutes, whilst holding a sick bowl. (The sick bowl wasn’t for me, it was for the midwife – she got travel sick going so fast in the back of the ambulance! You can imagine my joy!

Arrive at new hospital (famous one from One Born Every Minute). Tell them straight away there is no chance they are getting me on telly…..to which they reply: “Don’t worry. You’re not in labour! You won’t be having any babies”.

Me:“Then what the blinking hell are these contractions all about then?!?!? And the blood that seems to now be pouring out of me? I might be new to all this, but I really don’t think these babies are staying inside!”

Or words to that effect!

Skip a few more hours, a bit more pain and various medical professionals telling me I’m still not in labour, the doc says he’s going to give me some sleeping pills (I think it’s about midnight at this point and this has been going on since 5am).

Then he says: ”Do you think I should check your cervix? Just in case?”. They hadn’t done so at all up ’til now through fear of giving me an infection.

Me (politely): “Um, well I haven’t done this before, so what do you think?” “OK” he says. “I will just take a quick look.” (Doctor goes downstairs…then has a mild heart attack).

“I can see hair”, he says to the midwife. And he wasn’t talking about the fact that I clearly wasn’t prepared for being on such display that day!!

Cue more panic. Particularly from me. My little girl was on her way out!

After a few minutes, they decided that there wasn’t a rush, they could give me an epidural and then I could try to deliver the babies naturally in theatre.

So the anaesthetist gets me ready and performs the epidural.

I am shaking like a leaf by now and it makes it tricky for them to get the (giant!) needle in. But they manage it. It doesn’t work. (FFS! Why me!??!). I can still feel and move everything below the waist.

Then all hell broke loose.

Twin 1 (my little girl) had made lots of room in my womb now that she had decided she wanted to be delivered and so Twin 2 (my son) managed to do a somersault and knot his umbilical cord. His heart rate plummeted.

It was like when you are on a plane and you constantly look at the cabin crew when the turbulence hits, to make sure they don’t look worried.

Well I was doing this with the docs and they were PANICKING!

They were shouting, swearing, running about…

My husband was rushed out of the room to get changed for theatre.

I was wheeled at warp speed down a corridor to the theatre where they tried to calm me down to give me a General Anaesthetic.

They gave me something to drink and pushed down hard on my throat. I think that was the quickest way to knock me out in an emergency and not just to shut me up, but I don’t know for sure.

That’s the last thing I remember. I was out. The babies were then born by emergency C-Section pretty quickly.

In fact the midwife told me afterwards that the doctors had already started cutting me open before I was under (this makes me feel a bit sick) so I presume the epidural had finally kicked in.

When I woke up about 3 or 4 hours later I was violently shaking (result of the anaesthetic) and had no babies.

They were in Neonatal Intensive Care and I had no idea if they had survived or where my husband was.

Finally somebody came over to get me another blanket for the shivers and explained that the babies were both alive, but that my little boy did “have to be worked on”.

At this point I didn’t really know what that meant and I was too scared, too cold and too exhausted to ask any more questions.

They told me they were both being ventilated and were in incubators and they weighed around 2lbs each.

Then my husband came in and I really only remember crying and begging him to tell me they were ok. The doctors asked if I wanted to go and see them, but I still couldn’t get out of bed as the anaesthetic, along with the shock and section, meant I couldn’t physically move. And I was so scared of seeing them and not being able to cope.

So my hubby went and took a photo of them both for me.

Nothing in the world could have prepared me for seeing those photos.

They looked so poorly and helpless.

But in a few hours time, I was going to see them and I’m glad that I got to see a photos first to prepare myself.

They were even smaller in the flesh than I had imagined, but at least I was already prepared for all the wires and monitors and that really helped me get a grip.

As a result of pre-term birth and the lack of oxygen that he suffered whilst his cord was in a knot, my son has a severe physical disability (Cerebral Palsy, spastic quad).

And I do find myself wondering if I had shouted a bit louder, if I had asked them to check my cervix, if they had realised what was going on sooner, maybe, just maybe, he would not have suffered the brain damage that he did.

Or maybe he still would have. I will never know.

I try not to think about that.

I try to think that it could have been so much worse. I could have lost him, or both of my babies.

And so I thank those panicky doctors for getting them out before something worse happened

So how do you deal with it?

For me personally, I’ll be honest.

It depends on my mood, how I process those sort of comments or questions at any given time.

My response and feelings vary, which I think is only human. I like to think of myself as a positive person, a ‘glass half-full’ kind of gal.

However, at times, I’ve taken people’s words very personally and harshly.

I find myself feeling defensive and maddened at what they’ve said about my daughter.

Yes… she does have more than her fair share of disabilities, and it is sad that she can’t do many things, but you know what?

She is MY precious little girl. She is LOVED immeasurably.

And she is HAPPY!

Another approach I’ve taken is to tell myself that the person directing the comments means no harm and is merely ignorant when it comes to people with disabilities and special needs. 

They simply do not know how to interact or what to say, so I should cut them some slack.

Maybe try to educate them a bit.

They’ve probably never known someone who is deaf with cochlear implants or seen a child getting a tube-feed.

So I take time to talk

That is, if they want to take the time to listen or if they really care to learn about our life.

I would say I’m pretty good by now at reading people’s non-verbal cues and interpreting tone.

I won’t waste my time offering information if the person seems bored or uncomfortable…

Being a mother of a child with multiple disabilities has made me more sensitive in how I interact with or start up conversation when I see another child with visible issues.

I don’t awkwardly and quickly avert my eyes or turn away when I see a kid who looks blind or is ambling in his walker.

I try to be friendly and offer a smile.

I may comment to his parent/ caregiver on how well the child is doing in his walker, or how cute her hairstyle is.

 So I’ll try to say the right things.

Things that I would like to hear, as a special needs mama.

And I’ve learnt that sometimes, you just may not have the right words.

You might be stumped.

But that’s OK.

Patrick, my middle school child, sat in the kitchen, reading the newspaper and drinking his French Cappuccino.

I was perusing Facebook, making sure that I had not missed anything newsworthy overnight, like a funny cat video. Ouch. It was not a funny cat video.

The latest title from Ellen Seidman’s “Love That Max” blog caught my eye: “Let’s have special ed students do the football team’s laundry. Wait, what?!”

Maybe this is not going where I think it is…

I read the first paragraph: “Sometimes, you read or hear about something done to a child with special needs and all you can think is, How is it possible anyone could think that’s OK?” Yeah. That’s where it’s going…

“Do you know if Mrs. Locke’s class still washes the basketball teams’ uniforms?” I asked Patrick.

“I guess so, why?” Patrick asked. When Garrett was a student in Mrs. Locke’s special ed classroom, he washed the boys and the girls basketball team uniforms….

…and I thought it was OK.

Ellen’s blog was a response to another mom’s story. Maybe it was Ellen’s opinion and no one would agree with her.

I glanced through her followers’ comments and words like “menial labor” and “subservient” were repeated. Thirty comments and only one mother defended the idea.

“I was just reading about other special needs moms who do not think it is appropriate for kids like Garrett to be washing the athletes’ uniforms,” I told Patrick.

“Isn’t that the kind of job he’s going to have someday? Besides, he loves to help people.”

“I think they are bothered by the fact that your class doesn’t have to wash the laundry.”

“Well, my class doesn’t get to go horseback riding!” It’s true. Patrick’s class does not leave the building to go to hippotherapy.

Patrick’s class does not have aides or a sensory corner. And Patrick’s class does not do the laundry for the basketball (or football!) team.

Maybe it’s just me.

Have other parents complained at our school?

I reached out to Katie Locke who still teaches the class Garrett attended in middle school. “I feel like a lot of what goes on in my classroom is because I have parent backing,” she said.

“My students enjoy and take pride in doing the laundry, as well as other life skills. My students probably learn more from me of these skills than the extended standards.”

Katie explained that the team brought the uniforms to the laundry room (in a basket!) after the games; and her students went there to wash and dry them.

“This also taught the students some independence,” she said.

“The students loved leaving the classroom, even if it’s just down the hallway, to check on the laundry.”

I asked her about the argument that doing laundry was not teaching academic skills.

“We were most definitely using math skills,” she responded.

“The boys’ coach liked the uniforms stacked in a certain order and then laid out by numbers. The girls’ coach wanted the uniforms hung in the locker, which required the students to match the uniform numbers to the correct locker. The class also washed the towels from the kitchen and would return them folded and ready to go.”

The year Garrett was in middle school, his class was recognized at the last basketball pep rally

The team presented the class with school t-shirts and thanked them for a job well done.

“I was not at all offended or embarrassed for them,” Garrett’s bus driver, Heather Fosnaugh, recalled that pep rally. “My heart was full because they were happy and proud of themselves for doing their part and being part of the team.”

Below is a photo of Garrett’s middle school class wearing their shirts. My son is holding the pan of brownies and he appears to be quite proud of his place in that classroom.

I shared Ellen’s blog on Facebook. In it, she asked two questions:

1. “What message does it send to these kids that they’re cleaning their peers’ dirty clothes?”

Answer from Lisa Mariano, mother to a toddler son born with Smith-Magenis syndrome: “I think it totally depends on the kid. If it makes the kid happy and he feels good about himself, which I would think it would in most cases, then it’s great.

I suppose if there was a high functioning child, who perhaps wanted to but was unable to join as an athlete, it’s possible he could feel like it’s degrading.”

2. “What message does this send to the football team and the rest of the student body about them?”

Answer from Kristy Hamilton, mother to a teenage daughter born with Smith-Magenis Syndrome: “I know if my daughter was in charge of washing and preparing the uniforms, she would be over the moon.

It would also teach the typical peeps that special needs people are valuable and worthy. These typical peers are the future and are the potential business owners.

Who knows the seed this will plant in one of their heads? While Isabella is more like other kids than she is different, she is different.”

We live in a very small school district. It’s town where you go to school with the custodian’s children.

He is referred to as “Mr.” And if someone overheard you say his job was “menial labor”, your mom would know about it before you got home.

If asking my son to do these jobs is insulting, what message are we sending to ALL our students about the adults who do so for a living?

It has been three years since my son, now a sophomore, was washing team uniforms in middle school.

He does not attend high school games because the noise and crowds over stimulate his sensory issues.

However, his classmate Matt is an all around sports fan. I spoke to his mother, Lisa VanWey, about the laundry duty our boys shared in middle school.

“I am surprised by the backlash,” she told me. “I absolutely think that washing the teams’ laundry was a positive experience.

We can try to teach these life skills at home, but Matt is more motivated by his teacher and classmates. He loves to help people.”

Matt is a regular at most sporting events and Lisa believes that those friendships were made during the middle school years.

“I feel we can trust the football players. Sometimes on game day, the players will want to run to Subway after school. They will text me and ask if Matt can go with them.”

I spoke to one of those football players, Josh Strohl, and asked him what message he thought administrators were sending when Matt and Garrett’s class washed table tops and other custodial type duties around our school.

“What message do you mean?” he asked. “Do you, or the other guys on the team, think the kids in Matt’s classroom are your servants? “Um, NO!” He was insulted at the insinuation.

“Why? Because they have disabilities?”

“Well, that…but mostly because the kids in Matt’s class have washed other students’ dirty uniforms.”

“No. Matt likes to help. And not just bringing us water and stuff at the games. If we lose, he makes everyone on the bus feel better on the ride home.

He’s always in a good mood and you can tell he doesn’t want you to be sad.

Matt rides the football team’s bus to away games. He helps with water and whatever else is needed.

At the fall sports banquet, the football coach recognized Matt. He said that Matt started out as a manager, but ended the season as a team mate. It’s not just the football team that treats Matt as an equal.

This year, the basketball team voted Matt the most valuable player and presented him with a trophy.

So, what message have the parents, the teachers and the coaches sent to the athletes about our special needs children at Northeastern High School?

Franchise Photography captured that message in the photograph of Matt, aka Captain America.