Exercise is a funny old thing, and until having children, I never thought much about it. I could eat what I liked with no worry as I knew I had a good metabolism and would gain little weight.

This was how it had always been, and I didn’t stop and consider that that might change.

Even during my pregnancy, my weight wasn’t my concern.

I ate what I wanted and focused on making sure I ate enough- with having severe morning sickness throughout my entire pregnancy, the most important thing to me was that I ate and helped my babies to gain weight.

Everyone kept telling me I would lose it all once I gave birth, especially considering I was feeding twins.

But I didn’t. I lost weight but since then, I haven’t been happy with my body.

I haven’t liked the way my skin sags and I have stretch marks all over. I hate the way I can’t fit in to the clothes I wore pre-pregnancy and have had to buy a whole new wardrobe. But the thing I hate most is that my body doesn’t function in the way it used to.

I have to watch what I eat and exercise regularly to just stay the weight I am, let alone try to lose weight.

For months this has upset and frustrated me.

As someone who has never been concerned with their size and shape, I have become a person I don’t recognise and a person I don’t want to be.

So, I decided to make a change.

I started to exercise and bizarrely found myself enjoying it.

Not only has it helped me to get it shape, which in turn has increased the fun and games I have with my children, it has improved my mental health beyond measure.

I have learnt to appreciate my body and to listen to it.

To be grateful for my stretch marks as they are evidence of how my body grew to support two humans; to accept that though my body is not as it once was, it has done an amazing thing and I should be proud of it.

Though I still have a long way to go in terms of getting into shape, I am taking my time and being gentle to myself.

I still have days where exercise is the last thing I want to do and I still eat takeaways and junk food if I want to, but I do it in moderation.

I am not focusing on the negatives but am looking at the positives.

No, I haven’t lost the weight I’d like to have lost yet, but my body is stronger, and I am happier.

I can see my goal and know that if I continue I can reach my goal.

I remember the start of school in September so well from being a child. That mixture of nerves and excitement, the new uniform and new pencil cases.

The feeling of being able to start again.

But I always found change unsettling and I still do. I am the worlds worst military wife because I hate moving around, I hate starting again.

I dread both the beginning and the end of things. The middle is the best bit.

I had no idea until I became a parent that sending your child to school for the first time means that those feelings you had from being a child come right back, but they’ve mutated and multiplied.

I would argue that they multiply again when your child has complex additional needs.

This time last year, the journey to get Sebastian’s place at school had felt long and emotionally exhausting.

The meeting with our village school, a main reason for our house purchase 5 years ago, had left me in tears as it was very clear that they were not interested in “accommodating his needs”.

And frankly, “accommodating” was never going to cut it anyway.

He deserves so much more than that.

Having dusted myself off and got over my wounded pride that they didn’t see how incredible my son was, I found that the school in the village 10 minutes away could not have been more different.

After the battle over the EHCP with the endless, draining need to fully itemise every aspect of your child’s needs, which leaves your determination to be positive in tatters, Sebastian started there in September 2018.

I was so anxious about so many things.

So many things that many parents don’t have to consider, as well as all the ones they do.

I had huge concerns about whether he would manage mainstream school, and that even if he did whether it was the right decision for him.

Whether we had made that decision for us rather than for him. My worries were not whether he would learn to read and write.

They weren’t about his academic progress at all. I had two which topped the list. Would he be happy? And would he be understood?

I don’t necessarily mean understood in the literal sense in terms of his speech or his specific needs, but more that the complex mix of Duchenne and Autism make him a complicated little person.

I wanted him to be “seen” through all of that. I wanted to be sure he would feel the safety that comes from being understood.

When I think about him going into year one this September, I feel incredibly lucky. Because he has done much more than “manage” and his needs have been much more than “accommodated”.

His mainstream school have practised inclusion at its very best, celebrating all that he is and providing for the ways in which he needs more help.

I really do know that we are the exception rather than the rule and I appreciate it every day.

Sebastian has smashed through every single expectation any of us had for him, mainly because he has been so well supported, felt so safe and secure.

He has taught me what progress really means and how hard won it can be. And how much more it matters when it is.

He has taught me never to underestimate him. His school have taught me how much difference finding the right place can make.

So yes, he is understood. And yes, he is happy. And yes, that really is all that matters.

Parents of children with special needs are often diagnosed with anxiety and depression.

I am one of those parents. I am also the parent that was afraid to seek help.

As parents of children with special needs our main priority are always our children.

We honestly put everything else before we put our own health.

Not realizing that we must take care of ourselves in order to take care of our children.

When I first started having feelings of depression it was hard for me to speak out to anyone about it.

I thought I would be judged and even labelled as being an unfit parent.

At the time I didn’t know any parents that had children with specials needs personally.

And I felt like talking to someone that wasn’t in the same situation as me wouldn’t understand. They would be more sympathetic of the situation instead of being able to sympathize with my situation.

I didn’t want anyone feeling sorry for me because there isn’t anything to be sorry about.

I love my son more than I love me and I’m so thankful to have him. Its just that there are times when he goes through things or we get bad news that send me into depression.

It makes me feel like a failure as his parent.

So many times, I’ve wished for a magic lamp or fairy godmother to change it all, but we all know that’s not going to happen.

Therefore, all I must depend is the doctor. And I can’t take out on them what’s going on with Jaylen. Although sometimes I do because their the one giving me the bad news but it’s wrong of me to do so.

So, who do I blame for what’s going on with him? Myself!

I blame myself for every single surgery, seizure and his everyday struggles knowing I had absolutely nothing to do with it.

My entire pregnancy I did everything I was supposed to do to make sure my son was a healthy baby boy. And somehow, I still feel I failed him.

This causes me to suffer with depression as well as anxiety.

After battling with it for a while I decided to seek help.

I trusted my son pediatrician, so I decided to talk to her about the way I sometimes felt.

Once I talked to her, she told me that what I was feeling was normal for parents that have children with special needs.

Being we have so much more on our plates we often go suffer with depression and that I would be okay. She encouraged me to get help because I needed to take care of me in order to take care of Jaylen.

She reassured me that getting help wouldn’t make me an unfit parent but a better one.

With that being said I wanted anyone whose feeling this way to know that you’re not alone.

Its okay not to be okay. And its also okay to seek help.

It sure has been awhile since we have blogged about our sweet Oliver and all his shenanigans!

We are currently surviving ( and when I saw we, I mean dad and I) Summer 2019 with all three boys.

Summers are no easy task, and I wish I cherished them more when the boys were little.

Now it is almost impossible to keep the pantry stocked, bellies fed before the next one says “I’m hungry”, and having enough activities to avoid the “I’m bored”.

I can almost see you all through the screen now, nodding with agreement. Oliver has turned five this summer and I seriously cannot believe how fast the time has gone.

Along with the notch in the year older belt, Oliver has also scored two more notches in the diagnosis department.

Unfortunately we started the year off with Oliver experiencing his very first seizure.

It was such a frightening ordeal that we really do not have answers to yet.

I always knew it was a possibility with the hydrocephalus and Chiari II malformation, but figured since he never had experienced them when he was an infant or toddler, that we were kind of “in the clear”.

But, I was wrong and it happened.

He now takes up permanent residency in our king size bed at night, and luckily has not experienced any since that one morning.

Because of the seizure, we had to see a neurologist.

During one of his visits with our neurologist, she noted what sounded like a heart murmur in Oliver’s heart.

We had never heard of this before, in all his previous doctors, so it was surprising.

We now are scheduled to see a cardiologist to hopefully rule this one out, but we aren’t holding our breathe.

My little Oliver still soldiers on though, despite how the year has started out.

He is five and starting kindergarten soon! I survived him being in pre-k this last year, and am excited to see all the new friends he makes and new things he learns in the school year.

Plus, there is nothing better than getting those adorable little crafts they make throughout the year.

From my household to yours, I wish you the best of luck in the remaining days before the little rascals head off to school.

Last week James needed his summer holiday haircut.

A simple enough task you might think, but in James’ case it is one of very many tasks that require a routine to be known, and more importantly rigorously followed, in every aspect.

Firstly, there is the location; sat on the wooden bench in our hallway at home.

Then there is the identity of the ‘barber’; me, ably assisted by Clare (his mum) who keeps all of the clippings out of his face. Then there is the ‘distraction’; James’ iPad, fully loaded with films, his favourite YouTube clips (currently Japanese car or train journeys!) etc.

Finally, there is the clipping process itself (grade 4, by the way, for any aficionado’s), which involves starting at the back, then the front, and finally the most difficult and suspense filled part of all… around the ears.

James has his hair cut like this about three times a year, always during the longer school holidays.

As long as we keep to this routine, all is fine. Any change would be enormously difficult for him, and therefore for us.

I have visions of him going in to school with Grade 4 at the back and front but long at the sides over his ears!

The reason I share James’ haircut story with you is to illustrate that routine and familiarity are fundamentally core to the coping mechanisms of many children and young people with additional needs; particularly but not restricted to Autism, ADHD and other similar neuro diverse conditions.

So often this is misunderstood by adults, or just plain missed, with awful consequences for the child/young person.

I heard a story of a young person with ADHD who, in order to cope with change, needed to stand in the doorway of a room he was entering/leaving and tap several times on the door frame.

He did this wherever he went, including at school, but often 30 pupils trying to leave the classroom for their break together were not interested in waiting for him to complete his routine and would push him through the doorway, resulting in him lashing out in desperation.

This was interpreted as violent behaviour and he was excluded from his school and sent to a Pupil Referral Unit for young people with violent behaviour.

Now imagine if the school staff had been better trained.

If they had had a system where that young person could leave 30 seconds before everyone else, or leave after everyone else (whatever worked best for him) so that he could complete his routine.

If they had understood why he needed to do that. If they had understood other ways in which he coped with change, with a busy school full of pupils and noise, with the overwhelming of his senses on a daily basis, perhaps then there could have been a better outcome for him and for the school; a better strategy than sending him to a Pupil Referral Unit.

The opportunities to make good or bad choices regarding children and young people with additional needs or disability exist every day.

I remember a youth leader being put through to my ‘phone one day whose opening line was; “I’ve got this lad in my group, he’s got ADHD and he’s an absolute nightmare. What can I do to exclude him?”

I took a deep breath and asked the youth leader to explain to me what had happened.

It seems that during the group’s ‘talk time’ this lad had started to get a bit unsettled, showing early signs of anxiety and stress.

The leader had told him that as he couldn’t sit still and listen he wasn’t going to get tuck this week. The lad liked tuck (who doesn’t like tuck!) and so things ratcheted up a notch or two.

The leader responded by saying that as the tuck penalty hadn’t worked, the lad was suspended from club for a week and so couldn’t come next week.

Next week was party night and the lad had been looking forward to it immensely, so things then really kicked off and he was sent home (I’ve summarised a much longer story).

I rewound the conversation with the youth leader asking him to identify all the times that opportunities had been missed to support this young person, to recognise his needs and to help him to manage his stress and anxiety.

There were many… the leader finished the call saying that he was going to call the parents of the lad straight away, to apologise and to invite him to back to the party the next week, by which time a strategy to support the lad would be in place, known by the whole team.

All of these examples show us that taking the time to understand each child or young person individually, to understand what they find hard and why, to understand how they cope (and sometimes fail to cope) and why; to help them to understand that we are there for them, to help them and to support them, all of this is so vitally important.

So often, the challenging behaviour that we might see, and wrongly judge them for, is a final cry for help when we’ve missed so many other pleas for help and support already.

It’s a last desperate way of trying to get our attention, or a final attempt to respond to their overwhelming urges.

Surely, however we look at this, we must put the child/young person first; do everything we possibly can to remove or limit stress and anxiety, ensure the necessary routines are followed, and so help them to cope.

Putting their needs above our own; us doing the adapting rather than expecting the child to.

That’s why, in a few months’ time, I’ll be sat on the wooden bench with James (always on his right), clippers in hand with Japanese car rides on his iPad, praying that I can get the side bits of his haircut done so that he doesn’t go to school the next day looking like Max Wall…

Haircut Sir?

6 weeks of summer holidays in front of me. 6 weeks with a 5 year old with Duchenne Muscular Dystrophy and Autism and his 2.5 year old whirlwind of a neuro-typical, very active little brother.

How do I feel about it? Overwhelmed. And then guilty. And the guilt comes in confusing, competing forms.

I feel guilty that I feel overwhelmed. I feel that I should be enjoying every second of the time I have with my boys

A feeling that is constantly compounded by the knowledge that my son has a progressive and life limiting disease.

I should cherish every second, every moment because I know that there will be a time that Sebastian won’t be here, and I’ll look back and wish I had been more patient, more present. Less irritated by snack demands and constant bickering.

The huge pressure of “making memories” that will get us through the tough times to come.

More than that, I feel an ever present anxiety that threatens to overtake me if I stand still for long enough. I feel an urgent need to make sure that we “do” things, that time isn’t wasted.

Not just because his time with us is limited but because also because his mobility is.

I find myself wondering what he will be able to do this time next year and knowing that there are things that will soon become impossible. It is in the back of my head all of the time.

And then I feel guilt for Toby, for his brother who runs through life at 100 miles an hour, builds himself balance bike courses in the garden, naturally gravitates towards other children, hero worships old boys and who would love an older brother who could do all of that with him.

Sebastian’s interaction with him is so much better than it was a year ago, and I have a huge amount of hope for their relationship.

I see the delicate strands of what will be a of brotherly love grow stronger every day.

But I also know that Toby wants to rugby tackle him to the floor, wants to do “ready steady go” races, wants an older brother to talk to him and involve him in his games and would follow around the house.

Our summer activities have to cater for Sebastian’s needs over Toby’s. There is no way of getting round that. And I feel guilt.

Here’s what I’m realising that the guilt boils down to. Acceptance. It all comes down to acceptance. I keep thinking that I’ve got that one down, but I’m learning that it’s a constantly changing journey.

This summer is different from the ones before it in that the gaps are widening.

My friends who have children of Sebastian’s age are on a different path.

That path was more parallel a year ago, the differences were easier to ignore. As our children grow, ours is veering in a different direction. And I’m really not saying that direction is worse.

But it is sometimes just acknowledging that is huge. Sebastian’s peers are reaching the stage where those tiny advances of independence add up to make a big difference.

In equal measure, there are extra things that I have to consider about every trip out, every activity.

Just little things, but the balancing act is precarious. The plates in the air threaten to fall.

I want to carry on doing the same things, keeping up with the same activities, giving Sebastian and Toby the same life I always would have done.

And then I am weighed down by a familiar sense of failure when I don’t quite manage to do it.When the competing mobility limitations, autistic needs and two year old tantrums mean that we all end up in a sweaty tearful mess.

Because here it is: my son is disabled. I can’t just carry on regardless, I can’t just pretend that we can do it all.

While I will always do my absolute best to ensure that he is fully included, that we fill his life with everything we can, it is also true that our lives are not the same as they would have been without Duchenne.

I battle with that every day, with knowing that I cannot change that.

And while that will never mean that our lives are full of sadness, it does mean admitting that some are things that are harder, that make the day more challenging and there are actually things that we just can’t do.

There are days when I feel like I can put my big girl pants on and give it all a good go. And then there are days when I have to accept my own limitations as well as those given to us by Duchenne.

So I’m working on knowing that I am doing the best I can on a journey I often feel ill-equipped for.

That the guilt I feel for the days that I know I didn’t make the most of him, that going to bed wondering if I gave him enough joy, enough love , enough life to make up for the fact that he won’t get long enough is an impossible standard to set myself.

I’m also learning that we find our moments of imperfect perfection through it all.

And that Sebastian’s smile when he splashes in the paddling pool will stay with me forever.

Young children and little ones who are not verbal may not be able to express their wants and needs.

So, as a physiotherapist who has seen many children, I wanted to share some observations I’ve had through my 25 years of practicing and tell you some things to consider when positioning your child.

When you wrap your baby in a swaddle or a onesie, in a stander, position a child in a wheelchair or a stander, where they may spend an extended period of time, our priorities are comfort and function.

However, other priorities should be to prevent skin redness, maintain good postural alignment and of course ensure that the child feels safe and secure.

Your child may or may not be able to tell you exactly what’s uncomfortable, and instead may be giving you cues that are both obvious and indiscernible.

Signs that your child may need to be adjusted include that your child may cry, arch their bodies or appear to be uncooperative, demonstrate decreased eye contact, rock or bang their bodies, or become combative.

Pediatric physiotherapists pay special attention to positioning in and on devices because the right position will support maximum functional abilities for the child, and decrease future musculoskeletal deformities.

Proper positioning is essential for: comfort, to facilitate active movement, maximize body proprioception, help with self-regulation and exploration, head support, good postural alignment, and prevention for skin breakdown and other musculoskeletal deformities.

I’m hoping to touch upon what your child may feel or think but may not be able to eloquate and articulate.

Your child may be thinking…

I feel like I’m falling through space because my swaddle is not tight enough.

I’m so tired of lying on my back.

I’d like to reach that toy however I can’t roll all the way from my back, I wish I was on my side.

I can’t lift my head off the floor because it’s so heavy; I wish I was propped up off the ground a little, like on a towel roll to help me lift it up. (Please refer to your physiotherapist for instruction)

My reclined seat is positioned too vertically; it’s actually more difficult for me to keep my head up this way.

I’m keep slouching down in my highchair/wheelchair/seat. It’s much more difficult to lift my arms and hands when that happens.

My back is hurting because I slid down in my seat; I wish someone would slide me back into place.

I’d like to see what it feels like to go faster when I move.

Please let me know where we’re going and that you’re going to move me before you’re going to move me.

Here in Texas, everybody knows that the summer months can be absolutely brutal with heat. Sure it might not be as bad as Arizona, but it is no joke.

One of the biggest struggles my son faces during the summer heat, is keeping cool and finding activities to do while in his wheelchair.

He loves the outdoors and everything it entails (minus the bugs) and is always begging me to take him out.

We are a household that allows screen time, so it is always nice when he wants to break free from that, but c’mon… we are talking 105 degrees Fahrenheit sometimes!

Let me paint the picture real quick to give you an idea, but his pediatric wheelchair is almost all metal, and more than 70% of it is black.

Leave that baby in the sun too long, and you could actually risk some burns.

We try to limit the activities he can do while not in his wheelchair, just because the floor gets hot as well and crawling is his preferred choice of travel.

But lo and behold, (drumroll) we have found the solution! There are these things throughout the city here called splash pads.

They are turned on by the city during certain time periods and ring similar to back in the days when kids would play around in the water from an old broken fire hydrant.

This is much safer, lol, and designed just for this purpose. It allows Oliver to still manoeuvre around in his wheelchair without the risk of getting stepped on or burning himself on the floor, and although in the long run it might not be the smartest, he can stay cool and wet in his chair.

He has been able to roll around and meet some pretty cool kids at the splash pad, and best of all… it is free!

We do not let his wheelchair sit wet and try to dry it off immediately in the sun or with a towel, so I don’t have any negative things to report about it getting wet.

If you have any ideas or tips you would love to share about keeping cool during the summer, with or without a wheelchair, let us know below in the comments!

Inclusion is very important but sometimes its hard to get others to include children with special needs in different things due to liability.

I remember when I found out I was pregnant. I wanted a boy and I got a boy.

Once I found out I was having a boy I always talked about how we would throw the football around. I love football!

I’m a big Philadelphia Eagles fans in case you were wondering but I think my son like the Pittsburgh Steelers from his reactions when he see them play.

Well after having Jaylen I realized that us throwing around the football may never happen.

One day while venting on facebook about inclusion and how I always wanted Jaylen to play football Coach Derek Jamison from my hometown messaged me.

He invited me to bring Jaylen out to a jamboree. I agreed to bring him.

At this game Jaylen was given the opportunity to lead the team out on the field.

This was one of the best days of my life. Because although he didn’t get to play in the game, nor did he get to throw the ball he was given an opportunity to be amongst his peers.

He experienced going out on a field as if he was about to play in the game. Which was something I thought I would never see.

My son just as well as any other child or adult out there with special needs should never be left out of things because of their disability.

There are different ways to include a child with special needs and what Coach Derek Jamison did was one way.

An amazing way at that! Most times people look at our kids and feel sorry for them instead of finding ways to help them.

Thankfully things are getting better.

People are making things more adaptive for our children and they aren’t left out as much.

Those things can also become unavailable to us if we don’t utilize them more.

So take advantage of the things that are given to us because we could easily lose the thing we’ve been fighting for.