It has been a while

Head and shoulders shot of me looking directly at the camera. A serious and fatigued look

All I want for my kids…

This is an important post for me.

I rarely post a picture of myself, in fact its been over two years since I published a blog.

I am sat waiting for Conor to finish a self defence class. While I wait I have found some quiet time to reflect on this week

So why is this post so important?

There have been highs and lows.

We have finally found a school willing to accept BOTH Saoirse & Ailbe..Yay! After having read 6 reports from other schools on why they didn’t want my children.

That was a hard read.

To find a school not phased by our children’s needs and to see beyond the diagnosis is superb. Yes they will have to put in additional support and yes there will be bumps along the way. However, they are willing to try.

That story is for another day!

Why I am sat looking moody huddled over a cup of tea, hoping nobody will talk to me?

Conor, my eldest son was bullied in school this week. Not uncommon in secondary schools, I hear you say? What made this different ?

He was at his most vulnerable; alone, scared, & getting dressed in the changing rooms. Oh and did I mention there was a group of them? What tough lads they were!

  • Good news: he stood up for himself
  • Bad news: they did hit him around the head

Now some have told me that this will be a good learning skill for him 🀬 err no I don’t think so.

We are still trying to unpick the trauma from a year ago where we were assaulted by a parent on school grounds.

Why would a parent do that?

because we had a blue badge and can park on school grounds. yes, that is outrageous but sadly there are still people in this world that carry hatred towards others

Moving on..

Thanks to that incident our son has been left with anxiety over any form of conflict.

We can’t fight his battles…no matter how much I want to. We did the next best thing. We found self defence lessons instead.

So as I sit here and emotionally unpack from the week. You may see me sitting here with a miserable scowl. But behind this face are whirring cog wheels spinning on how to keep my children safe, how to make sure that they don’t spend their adult years with trauma from their childhood.

Conor has enough to deal with. I feel confident in saying he knows all to well the harsh reality of life.

Conor who is a boy with blonde hair. Wearing trainers, navy blue jogging bottoms and a blue and red coat. standing in a park holding a basketball. Posed in a running stance.
Conor playing basketball

He is a young carer

Conor had to leave his school & friends because of this assault. His whole world has been thrown upside down. I don’t know many adults that would get up each day having NO control over their environment or life. Yet still smile, be kind and go to an environment where they have no friends and the target of bullies

He has to deal with his younger sister who has major melt downs in the house due to her Autism, where he can’t do what he wants. He is always thinking about the consequences of his actions towards his sister and brother.

All I want as a mother is for my children to be safe, loved, and happy.

Friends say ;

We have so much going on in our family life. I don’t know how you carry on each day. I’m not surprised you are tired.

Yes I can’t argue with those comments. Some times it does feel like we are paddling like mad just to stay afloat.

Yes, we are exhausted, sometimes before breakfast we are ready for the day to be over. This doesn’t mean we give up because its difficult. Ok, we might stress eat, stay up late and binge watch box sets. There is also laughter and happiness in our lives too. It’s not all glum and stress. Unless we are all in the car…!

What it does look and feel like from my perspective;

Huddled over a coffee, looking moody & avoiding people!

Don’t be afraid to stand out from the crowd

This morning Saoirse had decided what she wanted to wear. We were due to go into town.

When I saw her dressed I was about to encourage her to wear something else…more acceptable to society.

Then I thought do I really care what others think? Will the whole insistence of trying to make my girl fit with society just turn into a battle that neither of us wants.

Pick your battles

I am so pleased i didn’t force Saoirse to change. As she skipped through town all the glances I got were ones of smiles and happiness. It was an unusual position for me to be in. People looking at us with smiles. Usually it’s looks of horror, judgement, and bewilderment at her behaviour.

Two ladies actually stopped and complimented Saoirse on how lovely her outfit was.

#beyourself #beawesome #autism #specialneedsmum #style #havingfun #standproud

Wdsd19: Ailbe meets his idols

Yesterday was an international celebration of Down Syndrome and all the amazing people involved.

We were lucky enough to be invited to a Mayors lunch organised by Portsmouth Down Syndrome Association and the amazing Singing Hands came along. They put on a fabulous show Party time πŸ’™πŸ’›

Ailbe couldn’t quite believe his “girls” were no longer in his tablet

We had a brilliant day. We sang, danced, and met friends.

Not everyone is lucky enough to be in this community. However, it doesn’t stop you being part of it.

Later that evening the whole world came together on Facebook to have a live world watch party to celebrate #WDSD19 World party well done #wouldntchangeathing

Thank you to everyone who took part in raising awareness for Ailbe and his tribe.

#portsmouthdsa #wouldntchangeathing #thefabulousworldofmax #singinghands #wdsd19 #wdsd #inclusionrevolution #iamable #abilitiesnotdisabilities #ableailbe #dsa @sallyphillips #changingperceptions #labelsareforclothes #family #friends #mytribe

Wdsd19

So here is this years video. It’s beautiful and I am so proud to know a few of the beautiful souls in it.

https://m.youtube.com/watch?feature=youtu.be&v=W8RQnqu60cs#dialog

Why do they keep producing awareness videos? Because every day someone or some company keeps seeing our beautiful children as a “risk” and that needs to change!

@wouldntchangeathing #wcat #inclusionrevolution #beawesome #wdsd19 #leavenooneout #portsmouthdsa @portsmouthdsa #chancenotrisk #labelsareforclothes #downsyndrome #mytribe #wdsd #family @lifewithsaoirse @fabulousworldofmax @mybeautifuldiversion @iamriver well done in being part of another #amazing video.

Soooo excited to be sharing this video compilation.

Yes Ailbe is in this Video that the amazing WCAT team have compiled.

None of the images you will see have been done by professionals. These have all been composed by parents who are passionate about changing perceptions and making the world a better place not just for our children but for future generations.

Here is the one I did for Ailbe πŸ₯°

Oh and please share share share πŸ’™πŸ’›πŸ’™

#abilitiesnotdisabilities #luckyfew #inclusion #iamable #senmum #lifewithsaoirse #ableailbe #wcat #downsyndrome #awareness #characteristics #makingadifference

Oh the places you’ll go

Ailbe is on the move!! He is becoming more adventurous.

However….

Sometimes Ailbe gets in places he can’t get out of. Like tonight. One minute Ailbe was crawling around the living room and the next minute I see these little eyes peering over at me….

#mumofboys #milestones #theluckyfew @wcat #iamable #nodifferent #inclusion #trapped #love #t21 #dsa #skills

A little poster I created after being inspired by so many amazing parents out there

Soon everyone’s news feed will hopefully be flooded with these amazing posters, just in time for world Down syndrome day 2019.

What’s the point? What’s the aim?

When a new parent or parents to be are looking for information on Down Syndrome. We want the internet to be balanced with positive information for them to see.

What better way than to have hundreds of these type posters

Please like and share πŸ’™πŸ’›πŸ’™πŸ’›

I had fun creating this little poster. #wdsd #wcat #lifewithsaoirse #t21 #luckyfew #mumsofinsta #love #littlewarrior #newcampaign #changingperceptions #iamable #ability #abilitiesnotdisabilities #differentabilities #worldchanger #t21rocks #dsa #downsyndrome #poster #positivechange #positive #charateristics #wouldntchangeathing #teamwcat

Brothers

This morning like every other household. We are in a mad rush trying to get the kids ready for school. Every parent can relate to the stress that this brings. Kids not getting dressed or looking for lost homework or having just remembered they haven’t done homework. All the while the clock is ticking.

During this busy Friday morning I hear a little made up song being sang. Conor is making up a song for Ailbe. In this song he sings “I don’t care about your Down’s syndrome because you are amazing and I love you to the moon and back”

In these special moments my heart couldn’t be prouder.

#proud #inclusion #brothers #love #luckyfew #t21 #dsa #downsyndrome #sing #wcat #mumofboys #iamable #rockingthatextrachromosone

I came across this perspective on one of the many online communities I am part of.

I wanted to share this story I read about a fathers perspective. One day I hope Kyle will tell his story as he is an amazing father to all three of ours.

For now have a read of this by Mark

The website can be found here PADS

#fathersstory #t21 #family #iamable #luckyfew #wcat #siblings #love #abilitynotdisability #changingperception #weareable #dsa #dontcountusout