When I saw this title as a blog suggestion header, I was a little taken aback as it made me think for a quick second – made me reflect when it’s not something that I often do.

I’m scared to reflect in many ways about the SEN journey we have endured, it feels like we have been on it for so long – yet it’s never ending.

I will never forget what my mum once told me early on:

“it doesn’t really get easier Zo, the worries and problems you face just change to different ones”

And this is exactly right; as you conquer one challenge, it’s not that you have now finished or even that you have time to reflect before moving onto the next – they just morph into each other, into what feels like just a constant barrage of emotion and strife.

I like to think that I am quite an optimistic person and not one to dwell as that takes too much of my energy, energy that I need for the tough days.

Saying this though I am a worrier about getting things right and the need to be in control.

I have been a nightmare whilst making the secondary school selection this year.

I suppose another reason I’m not all keen to reflect, I don’t want to focus on the “what ifs” and the “I wonders” because all said and done I can’t change anything and I know that every decision that I have so far made has been to the best of my ability and knowledge for what I considered to be the best for my child.

Reflection for me automatically takes my mind to focus on the bad – the what went wrong.

Ask me this same question in a work environment and I will pick out every highlight and time to shine to give you the best end of year review possible!!

So why not for my life, which is full of so much good?

I’m going to try…….

In fact; if I reflect on Cameron’s primary school journey as a whole, now that he is in year 6 – yes there were some issues and low points but there have been some absolute diamond moments too:

His first residential trip

His head teachers award

His first best friend

Him passing his phonetics test when it was not expected he would

Receiving postcards of praise from school about his learning and attitude

Every teacher, in every year saying he is an absolute joy and so loving

Him learning about his autism and then wanting to share an informative video with his class

Helping the younger children in school as “buddy’s”

Him volunteering to help on the xmas sale stall after school as its “nice to help others”

I am grateful for all the above, all the nice comments from his peers and from people that know us.

Yes, there are obstacles that we must manoeuvre and there will always be challenges but I have a beautiful, healthy, kind, funny and knowledgeable child who is healthy and happy.

A child who loves his parents, his family, his friends – loves technology, loves going to the gym and can’t wait for “all the fun things that we do”!!

So actually, on reflection – I’m the luckiest woman in the world, I have a well-rounded child with manners and so much love to give to those that will deserve to receive it from him!!

The Holiday season can be “a lot.”

A lot of extra activities, a lot of extra lights and noise and crowds in public.

For those of us with kids who have special needs such as sensory issues and anxiety, it can be a stressful time of year.

I used to put a ton of pressure on myself to make the holidays magical for my kids.

One year I planned a day of cookie and gingerbread decorating activities only to have it go haywire.

One kid couldn’t stand the texture of the frosting; one couldn’t stand the taste.

One freaked out because her gingerbread house wouldn’t stay up.

Major whining and frustration tantrums ensued, and I was left in a mess of gingerbread ruins and tears (some of them mine).

I’m pretty sure I had frosting in my hair as well.

I also tried to do the cute holiday photo where all the kids have matching outfits (or at least coordinating colors).

This went over like a lead balloon as my youngest clawed the tag in the back of his cute Christmas sweater and screamed bloody murder every time the photographer came near him.

The closest I ever got was three years ago when I bought all four kids matching pajamas and had them sit on the couch.

All but one is looking everywhere but at the camera, but since no one was crying I called it a win.

We tend to keep close to home during the winter due to cold and flu season, but the rare times we have attempted to take all four kids somewhere, we usually ended up leaving early because one or more would become overwhelmed and meltdown.

A few years ago, I decided to forgo a lot of the extra holiday “stuff”.

Let me tell you; it was glorious.

We still have our moments , but these last few years have been more relaxing without the added pressures of obligations I had taken on when my plate was already full.

The kids are a lot less stressed and anxious with just a few special holiday events instead of a full calendar.

There is much talk of self-care when it comes to parents of kids with special needs.

It is a concept I am totally on board with, but the reality is that it is not always possible to slow down and take a break.

Sometimes I’m lucky if I get five uninterrupted minutes in the bathroom, and the holiday season is no different.

I’ve learned that during the holidays self-care could be just letting go of the Pinterest expectations that I had put on myself and enjoying my kids.

The holidays don’t have to be “magical” to be enjoyed.

Self-care can also be saying “no” to things during the holidays that you know will cause stress and anxiety, even though they may sound fun at first.

Self-care doesn’t necessarily mean getting pampered at the spa (although that is nice too!).

It can mean caring for your mental well-being by reducing stress and slowing down.

Sometimes the best gift we can give ourselves is the gift of grace. Letting go of some expectations and  being present in the moment.

Not feeling guilty for checking off every single thing on your to-do list.

Christmas can be a very difficult time…

Especially for parents of children with additional needs.

Everyone seems to be enjoying a perfect time of celebration, with invitations to meals, parties and festive fun flooding in, while for many of us the holiday period is a lonely time.

We can find that we are overlooked for the parties as people “Didn’t think you would be able to come due to, you know, having Billy…”  Or if we suggest people come over to ours, we can find they have “Other plans…” that don’t include us.

Siblings and parents of children with additional needs often feel excluded from a wide range of social activities, especially at Christmas.

Many families with additional needs can feel lonely and isolated during this time, finding themselves merely trying to survive the holidays rather than enjoying them.

But it doesn’t have to be that way, there is a support network out there, on our doorstep.

A group of people who get it, who understand what it’s like to parent children with additional needs; a group of people who have first-hand experience of how isolating and lonely a life it can sometimes be.

So, who are these amazing people and where can we find them?

Well, we don’t have to travel far to find out, just look in a mirror and you’ll see one…

Our communities are full of parents just like us who experience similar things to us.

One in five children have an additional need or disability of some kind, that’s about 2.5 million across the UK, and even parents of children with more complex and rare disabilities are not alone, there are parents like you out there too!

Christmas is supposed to be a season of hope, a season of goodwill to all…

How about if we all were to reach out to other parents of children with disabilities in our community and together make this a really special Christmas, spent with people who get it, people who understand, people who carry the same scars as us?

People we can share the highs and the lows with, because they will have lived many of them too!

But where can we find them?

Well, we may have some contact with other parents through school, clubs, church or other places that we and our children access.  We might have a few contacts on social media too (see later for some ideas there).

Some organisations run events to bring families together, there may be something happening near you.

Take 5 and Chat

Friends of mine run an organisation called ‘Take 5 and Chat’, providing or supporting drop-in centers across the UK that are geared up for supporting families with children with additional needs and helping them to meet up.

Have a look to see if there is one near you, or if not, how about contacting them about setting one up:  www.take5andchat.org.uk/sign-posting/

Additional Needs Alliance

I co-founded this support group about six years ago and since then almost 1,800 people have joined, including parents, children’s and youth workers, and more.

It’s a lively, vibrant on-line community, but people also use it to link up locally too…

There’s sure to be some people near you, why not ask:  www.facebook.com/groups/additionalneedsalliance

Contact

Contact are an organisation that provides support services to families of disabled children across the UK.

As they themselves say, “We support families with the best possible guidance and information.

We bring families together to support each other.  And we help families to campaign, volunteer and fundraise to improve life for themselves and others.”

Worth a look?  www.contact.org.uk

Mum networks and Dad networks

There are loads of online networks set up to support parents, including www.mumsnet.com and www.dad.info

These networks often include threads for parents of children with disabilities or additional needs and can be a great way to find local contacts.

So what do you do when you’ve found them?

Well, that’s up to you, but connecting with people who share a similar journey as you gives you a world of opportunities…  swapping tips and ideas, play dates, friendship, childminding, whatever you want it to be.

One thing is certain though, if you connect with a bunch of people who get it, who are nearby, and who you can chat to about the things you both share, about everything, you’ll never be alone!

Now, where’s that diary?

Relationships take work. There’s no two ways about it. This applies to any and every relationship in my opinion.

To romantic relationships, close friendships, distant friendships, family relationships, all of it. Things that take work take energy, and when you have little energy those relationships can become strained and even fall apart.

I am lucky. I always have been.

I met Phil in 2010. I was amazed by the fact that we liked most of the same obscure music… I was amused that our DVD collections were almost exactly the same in spite of our odd tastes.

It sounds cheesy and silly but it actually was love at first sight. From the night we went to making it “official” we saw each other every single day without fail, without even planning it. It just happened.

That’s the best kind of relationship… where you just seamlessly fit into each other’s lives as if you’d never been separate. (And I apologise to Phil who will probably read this and cringe. Don’t worry, I’m cringing a bit too).

But you know what? The special needs dads are one of the most overlooked essential features to many families like ours.

I know plenty of families that are without a dad and are a single mum or a single dad and they inspire and amaze me every day.

But I feel it’s important in my situation to raise some awareness.

Just because we aren’t a single unit it doesn’t mean we are without our challenges, it doesn’t make it automatically easier. Each situation is unique and has its own set of strengths and weaknesses.

I deliberately waited for this time of year to write about this as we are as far away from Father’s Day as physically possible as I write this, and I’ve done it to highlight the importance of dads all year round.

“Sorry dad, I always forget your name, what is it again?” I heard one of my daughter’s team say a few weeks ago.

I don’t expect her to remember every name, she has a huge case load.

But at the same time, it deflated me a bit to think that in spite of all he does it’s only my name that was remembered.

Five days a week he is up and out of the house working hard to provide for us. It’s manual work, it’s long hours, it’s out in the cold.

He doesn’t complain. Hardly at all. He more often than not does this on next to no sleep. When it comes to parental duties in the night, he is next level. Either one of us gets up, or we get up as a team.

Sometimes when Amy needs a lot of intervention, we are both needed. She’s a force of nature and if you’ve ever seen us try to give her nasal spray or nasal suction you’d see exactly why! She absolutely hates it and is incredibly strong.

Sadly, one of us has to be the restrainer, and one of us has to be the medical intervener.

It breaks our hearts doing a lot of the things to her that we have to do and we’ve had an especially tough time with it lately where we’ve been reduced to emotional wrecks over it all.

Some nights we might as well not go to bed… and yet he still goes to work. When he comes home late and hungry, he has to deal with my rantings for the day!

I try really hard to be positive and upbeat – after all he doesn’t need to come home after a long day to hear my whining… but at the same time I need to vent and let the emotions out to someone who will understand. It’s a really hard balance to achieve.

I’m often saddened at how we’ve become like a care team for our daughter.

A family day out can be planned with military precision and still end up in either hospital, or complete emotional breakdowns. Leaving the house is an arduous task. On days off he wants to make the most of his time; but quite often I’ve been so busy in the week that my anxiety has peaked and I don’t want to leave the house at all.

It’s all about compromises, sacrifices, and trying to be a bit less selfish for everyone else. I suspect there is an element of this in the lives of most families, but I feel that for us in our situation it is amplified tenfold.

I do miss the days where we both worked full time and could come home and just slob out on the sofa and rest. I miss being able to leave the house with just keys, phone, purse, and not have to worry about so much.

We recently had two nights of respite and our instinct was to book a hotel that has a bath. We purposely stayed in the closest city in case we needed to rush back to Amy.

The main excitement for us was a bath.

We only have a wet room now which was a very upsetting compromise for us when we sold our house to rent an adapted home.

We bought our respective bath bombs, and planned some nice meals out. Meals without accompanying audio of tantrums and nursery rhymes!

We missed her loads but at the same time were so grateful to be just us for once. Unfortunately, on the second night Amy had a really bad night and I had a missed call at 02:30 about her oxygen levels being low.

Our plans for that morning had been scuppered and we had to rush back to get her checked over. She was indeed poorly and very sorry for herself and antibiotics were prescribed. She was then off school for a considerably long time, and there we were. Back in our routine.

Work. Get through the day. Go to bed. It kind of sucks.

It means so much to me to see him with Amy. He’s a truly amazing dad. She loves rough play. She wants to be thrown around, bounced, jiggled. By daddy.

It isn’t even half as funny if anyone else does it. Sometimes all she has to do is look at her daddy and a cheeky smile appears on her face in anticipation of what comedy is about to ensue.

It’s a beautiful dynamic and she really is a daddy’s girl. I know they aren’t playing football in the garden, or chasing each other round the house… but they are doing their own equivalent to that, and so naturally as well.

I see it all the time, people get together, get married, buy a house, have children, continue to pursue their own careers. Their child being in hospital may never happen, or maybe once or twice.

Their lives are relatively normal. I really thought we were going to have that.

It sometimes shocks me to replay in my mind all that we have been through together. We worked hard, bought the house, the house was unsuitable for the severely disabled child, the house was sold, a job was given up, a house was rented.

It has felt like in spite of our hard work we have been forced to take a lot of backward steps to be where we are now.

It has been a tough pill to swallow for all of us; but equally it makes you realise that you don’t always have to follow the “what’s normal” trajectory. It’s quite nice to build your own normal, to have your own little world that only the three of you are part of and understand.

He’s so physically and mentally strong.

I wish I could be more like that. It is very rare for him to say he’s struggling to cope, he just keeps plodding on, just how Amy does.

They’re both an inspiration to me and are my driving force to keep me focused on trying to be who they need me to be.

It’s currently cold and rainy, it’s his day off… this morning he apologised for not being physically able to help me get Amy ready for school.

Sure, I did need the help… but I recognise that he was up more times than I was in the night and this is his day off.

It’s sort of like we don’t get a day off sometimes. Amy is at school now. He had a little lie in… and now he is outside dismantling some unwanted furniture that’s been blocking our hallway for a few months now.

He has so much he wants and needs to do but so little time to do it. Last night he was putting up the curtains in Amy’s room that fell down.

It can’t be easy being a full-time working dad, a carer to his daughter who has very high needs, get day to day DIY jobs done, and also find time to actually power down and relax.

I admit to sometimes feeling jealous that he gets to go to work.

It’s entirely different to everything else going on in his life.

I loved work. I loved the people. It was hard at times, but I had my own income, I didn’t have to penny pinch, and we always had such a laugh.

Not working has taken away a huge part of my identity, self-esteem, and self-worth.

I miss it horribly every day. To compensate I keep myself as busy as I can and try to make each day count.

But I still find myself by the door missing both of them. Wanting her to come home from school. Wanting him to come home from work.

Wanting to be our little family unit.

In our time before Amy comes home today, we have lots of annoying errands to do, then she has a GP appointment after school and we need to do a pharmacy run (again).

It’s sort of the same every week when he’s off on a Monday.

I hate that we have to do these things, but selfishly I’m glad he’s there with us for it as I do feel lonely sometimes and there’s a lot of pressure on me when out on my own with Amy.

I’m not always easy to be around. I do wallow and complain, I do get emotional and irrational.

If I could walk away from myself I would. But he’s always there. It would be so easy to just say “I can’t do this”, but he doesn’t say that.

If anything, I think it makes him try harder.

He has adapted to a new normal better than I think any man would, and I’m so thankful for that.

Yesterday Amy had an aggressive outburst and lashes out at me. She’d just had her second shower of the day (thank you, seasonal antibiotics!) and I was trying to dress her.

She didn’t want me to dress her and was tired and angry. Her movements became uncontrollable and she had really hurt me physically several times.

The tiredness beat me and I burst into tears and told her off. Phil appeared and took over dressing her.

He stayed calm and rational and gave me that space I needed to go and regroup and calm myself down. Like I said before, lucky.

The picture I’ve used for this post was taken on a recent dog walk, they were sharing a little inside joke with each other and laughing.

I took a little sneak shot.

It’s such a sweet picture. It was hard to choose just one picture as I have so many of them both that show what an amazing natural bond they have. I said to Amy recently “daddy will be home soon”.

All she got from the sentence was “daddy” and began to look around for him hoping he was there.

She might not be able to say thank you daddy, or daddy I love you. But she says it with her facial expressions and vocalisations every day.

Our relationship has changed a lot over 8 years. I can’t believe what we have got through together. I think it could make or break people.

There is a definite element of PTSD for him.

He too shudders when we are in hospital and hear those beeps that take us back to the NICU days. There are TV shows we can’t watch as it reminds him of almost losing both me and Amy. For a while we both suffered just from the sight of an ambulance.

There is a lack of help and support for special needs dads. They are there, quietly working away behind the scenes. They are the integral cogs and gears behind the clock… you don’t see them, but they are there, and without them it just wouldn’t work how it does.

They say men are less likely to seek support, or clichés such as “men don’t cry”, “men just get on with it” and so on. I find these kinds of opinions truly toxic and untrue and it perpetuates a nasty stigma about mental health. Seeing loved ones struggle is hard for anyone regardless of gender or role.

Men also feel scared, helpless, stressed, emotional.

They feel the pressures and strains of everyday life, they want to be there but can’t always be. There are things they would change if they could.

They have the what ifs and the why mes. They also push the wheelchair through the hospital with pride.

They hold their child and feel a deep love. They even learn to switch adapt toys sometimes and find ways to make life easier and more accessible.

This is probably the most emotional I have ever felt writing a blog. It has made me really reflect on everything and try to view life through someone else’s point of view.

I feel even more appreciation and admiration than I did before. We have been through more than I have mentioned in this post and I have just so many stories I could share on the topic.

So, dads. You’re doing an amazing job.

You might not feel like it all of the time, but we see you, we appreciate you, and we can’t do it without you. Thank you so much.

 

When I was young there were a few holiday traditions that I looked forward to every year; the annual extended family Christmas party, driving around trying to find the best light displays and getting to open one present on Christmas Eve.

When I was a teen with a part-time job that required me to work weekends and some holidays, finding great light displays and being home on Christmas Eve got put on the back burner.

The family parties grew smaller and more infrequent as the cousins grew older and started their own families.

Even though the consistency of those traditions ebbed and flowed, the memories never faded, and I promised myself I would do similar things with my own kids when the time came.

Fast forward a couple of decades, and life is a whole lot different than I ever could have imagined.

Having two children with a myriad of special needs between them causes you to reevaluate the definition of normal and adjust accordingly.

Holiday traditions are no exception.

We may not be able to do the huge family parties for fear of overstimulation and meltdowns, but the kids get to open one present on Christmas Eve as I used to.

And now that they are old enough to appreciate pretty light displays, we have done a couple of test cruises around town, with their favorite Christmas music playing on the car radio.

So far, so good.

Traditions help us bond as a family and give the kids a sense of security and something to look forward to.

Our Christmas tree goes up the day after Thanksgiving every year; they know this and start asking about it sometime around Halloween.

We also have a snowman Christmas countdown calendar that has become a fixture of our holiday décor.

Starting December 1^st, the snowman’s nose gets moved each night before bed without fail.

As the kids are getting older, we are testing the waters with new traditions.

Having a child with chronic lung disease means that there is only so much we can do out in the community during the cold and flu season, so we try and find things we can do at home.

We attempted a holiday movie marathon.

The kids lasted about an hour, right about the time the popcorn ran out.

Admittedly, I nodded off on my couch myself. It’s a trial and error process, but I love the memories that we are creating as we try.