Photos from school

Every day as soon as the taxi drops him home, I eagerly unzip his bag to read his diary. I wish I could ask him about his day but that isn’t possible. Well, it is possible, but he can’t answer. At 14 he still can’t speak and that home school diary is my only lifeline of knowledge of what his day has been like. 

That diary is everything. 

It lets me know if he’s drank anything all day and what he’s eaten.

It informs me of any care needs he had and how these were met.

It helps me know if he’s had any seizures and if so when and for how long.

It notifies me on what events are happening as he can’t tell me.

It fills in the pieces of his day and gives me a connection to the staff working with him. 

It gives me knowledge of how he’s progressing and how his mood has been. 

Every word in that diary matters but there’s something that matters even more:

Photos from school.

A click on an iPad or a button pressed on a camera and a small paper printout sent home means the world to me. It gives me more insight into my son’s world than anything the staff could write. It lets me see that my son is genuinely happy and relaxed.

It gives me something to show my son to talk to him about his day. It highlights my son’s achievements and makes me feel he’s cared for. 

More than all of that though those little photos give me so much peace of mind that my vulnerable son is ok when he’s out of my care all day at school. 

It’s hard to trust people when you have a child who can’t communicate and who has very high needs. Now he’s at high school, knowing all the different staff is much more difficult and complicated too.

He can’t even tell me if he has friends or share stories of his classmates. There were times during Covid when I didn’t even know how many were in his class or any of their names. 

Now I treasure every single photo from school so much.

I check the schools Twitter account to see if there’s any new ones of my child at least twice a day and treat that home school diary like my life depends on it. 

It might just take one moment of an adult’s time to snap a quick photo but for me that photo means everything. 

He can’t tell me anything about his day but a photo can. 

A small piece of paper but priceless to parents like me. 

We Were Given These Children: A Letter of Encouragement

When I saw this tree, I could not help but remember God’s Word.  “He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.” Jeremiah 17:8

Being a parent can have its challenges for sure. However, being a parent or caregiver for a child with a disability takes challenges to a different level.

You were given this child or children…you, and no one else. You are whom they need and whom they depend on. Not only are you brave, but you also have the soul to truly love them even on their hard days.

You are motivated to give your child everything they need.

It takes a heart of courage to wake up every morning and do it all over again, yet you do it, every single day! I know you are exhausted most days, but somehow you pull through and take care of the needs of another human being, even before your own needs.

The best part is that you find such a deep joy in this child that God has placed in your care. God trusted you enough with one, or more, of his special children, and I know you make Him proud.

I also know, some days it doesn’t feel like anyone might be proud of us. We have some downright ugly days that we feel like such a failure. God does not see us that way. Remember to let go of past so-called mistakes. I do not believe there are true mistakes if we learn from them.

If we are feeling depressed that means we most likely are living in the past. If we are feeling stressed and anxious that means we are most likely living in the future. Live in peace in the now and enjoy your days with these special children.

Life is fleeting, too fleeting to live with any regrets.

These children with special needs look to you, to your smile, to your gentle touch, and your ability to maintain your patience, even during the most difficult of days. You make their life OK. You are the bright spot in their day, their comfort, and their strength. You are theirs and they are yours.

I write this blog because I know all too well how challenging life is for you. I too have a child with special needs. I know what most of you go through, as all our children have different levels of disability. At the end of the day, we all have commonalities on this journey. 

I know my daughter delights when I smile at her, when I hold her hand, and tell her how awesome she is. The joy she has brought into my life could never be replaced.  

To be fair, I must admit there have been many days I have wanted to give up, but this is not something we can just give up on. I know that is just my exhausted brain thinking and truly not where my heart is.

My heart loves this child with all my being. Don’t be too hard on yourself when there are days you want to give up, or you don’t feel like you can “do this” anymore. Say only kind, encouraging words to yourself.

My goal here is to encourage all of you.

. Especially during this time of year. I know there is a lot more stress in my home during the holiday season. My daughter started getting excited about Christmas around the time the stores started putting up Christmas things, which as we all know is before Thanksgiving, and some start around Halloween.

My daughter’s excitement turns into a serious case of stress and anxiety. One would think being excited isn’t a big deal. She is looking forward to a fun day; however, her excitement can turn into a meltdown at any moment.

I know there are many of you that can relate to what I am saying. We all have our own ways of helping our children through this exciting stress. For me, I find redirecting as soon as I see any hint of a mood. We put all our fun events on the calendar. When she is overly excited, looking at the calendar helps her cope.

Don’t forget to find some time for yourself during the holiday season.

. I know this can be challenging, especially for some of you that do not have someone to help you. For those of you that do not have help of any kind, I pray that some comes your way.

I believe God can provide whatever we need. I like to thank God in advance for providing whatever need it is I am asking Him for. Try that for yourself. Thank God for providing the right people, trustworthy people that will love your child and put their care and needs above all else.

Believe in yourself, and on the days you are questioning yourself, remember that YOU HAVE GOT THIS, MY FRIEND!!! Be strong, like a tree planted by the water.

Merry Christmas and Happy New Year from Emma and me!

Bugs and dropping temperatures

How is Christmas just around the corner? I’m sure it was only a few weeks ago that we were struggling to keep the Dude cool enough with soaring temperatures, yet suddenly there are letters coming home about school trips, Christmas raffles/fairs, Santa… and now we have the opposite issue. Keeping him WARM!

We resisted putting the heating on right up to the final week of November, mild weather helped, as did warm clothes. Then the first of the Autumn/Winter chest infections hit and it was clear that we couldn’t risk leaving the heating off any longer… it’s not the cold as such that’s the problem but the damp in the air that gives him (and me) issues.

I’ll be honest, he scared us a bit with the speed he went downhill but antibiotics were started quickly enough to stave off the worst and we managed to keep him home, albeit with a ‘home HDU’ in operation. All medical parents will recognise the set up; SATs monitor, suction machine and oxygen cylinder set up, tray of syringes with various medications, paracetamol and thermometer at the ready.

Its hard work, exhausting and worrying having any child poorly

. Add in regular physical interventions such as chest physiotherapy, suction to keep airways clear, seizure monitoring/management and the constant concern over whether they are reaching the point where we need to move them to hospital and you’re got a potent mix for anxiety, sleepless nights and exhaustion.

As he so often does, the little monkey bounced back almost as rapidly as he’d tanked and within days he was back to his usual self. Less than two weeks later, and he’s home from school – temperature, coughing, rattly chest.

The phrase ‘here we go again’ flies to mind, as my poor little boy passes out on the sofa, his beloved and ever faithful Merlin never far from his side. Excuse me while I hunt out the Groundhog that must be inhabiting my home somewhere (because Merlin certainly isn’t looking for it).

The Path of a Caregiver: Surviving the Holidays

“Your word is a lamp to my feet and a light for my path” Psalm 119:105

Is there a person that relies on you for all their needs, most of them, or even just some of them? Either way, if you are a caregiver, you will have answered yes to this.

The holidays are busy enough, but when someone is a caregiver, life seems very overwhelming. One might become exhausted early into December and most especially before Christmas.

How can we enjoy the holidays and still be the caregiver our person needs us to be?

I know this is easier said than done for most of us, but you must take time for yourself. If you don’t it will only lead to burnout and exhaustion. This can lead to illness. We as humans need to rest and recuperate.

Keep an organized calendar so you can plan accordingly and look ahead at what you need to accomplish that day. Most importantly, try not to think too much about the days ahead. One day at a time and one step at a time.

Use your time wisely and listen to what your gut and your body are telling you. If you know you need a nap, and you have the opportunity to do so, take one.

Talk to others, and tell people close to you that you really need help. Maybe give several people some things that you could use help with. This way you are not putting too much on one person. If you don’t tell anyone you need help, there is no way for them to know. I know it would be nice if others just knew our needs and came to our rescue. I don’t like to ask for help, but I do so I can keep my head above the weeds.

It takes a tribe.

I love the way tribal Indians lived. A child is not raised up only by their parents.

For example: From the article “Family Life in the Culture of the Plains Indians” by Sally Painter “The elders of the family played a vital role. The women helped in child rearing and domestic chores. The elder men may have served on the chiefs’ council. They served their extended family as teachers, mentors, spiritual advisors, and confidants. The Plains Indian elders were highly respected by their family. The family took loving care of their elder members, and honored the infirm to ensure an honorable, dignified death.” (Family Life in the Culture of the Plains Indians | LoveToKnow)

In my opinion, this is what family is all about.

I find it extremely sad that family care, for some, is nonexistent. I often wonder, why are we here if we are not taking care of each other and being kind to each other with love and compassion? I believe this is one of the core reasons we are on Earth.

There are many other ways to take it slow and take care of ourselves during the holidays, and that should continue into the year. We all know these things, but it can’t hurt to say them anyway.

We can all use a reminder of what our bodies need, myself included: exercise (at least take a walk), comfort from a pet, plenty of sleep, eat as well as you can. I know, nearly impossible during the holidays. It can be really difficult to not have dessert at every gathering. I mean, we have to try our friends’ desserts! Take small portions so you can enjoy without overdoing it.

These are all things we know. My hope is that this blog will give you a little encouragement and strength. Remember to have fun and take time out to be silly.

Caregiving is a lot for one person, and no one can ever know what it’s like until they have walked the path of a caregiver.  

CVI, Hope, and Christmas

One of the cruellest aspects of the Dude’s epilepsy is how it has damaged his vision. As a baby with uncontrollable epileptic activity going on constantly in his brain, he was effectively blind.

The first glimmer of optimism came from a wonderful human being who evaluated him for developmental therapy. He was the first to explain to us what was really happening in our son’s brain in terms of development v’s seizure activity, he was the first to tell us not to give up hope and he was the first to say the term ‘cortical visual impairment’.

CVI (cerebral visual impairment is the more accurate terminology) is what happens when seizure activity prevents the brain from developing the pathways needed for vision to correctly develop despite the optic nerve and eyes themselves being perfectly formed.

In our boy’s case, the seizures were so extreme that his brain just couldn’t fathom what his eyes were telling it. For the first time since our boy was diagnosed we were told NOT to just ‘watch and wait’ but to start working with him immediately to develop those pathways and help his brain overcome the negative impact of all that pathological electrical activity.

A decade on from that first meeting, an enormous amount of effort and hard work later, and our boy has functional vision.

He still have severe visual impairment however he DOES have useful vision. Working with his teacher for the visually impaired we have learnt a huge amount about how to help guide his visual development; we’ve learnt that his peripheral vision is far better than his central vision, but we now have tools to help him continue to develop his visual skills.

And there is no better time of year for him to really show off how far he’s come, than at Christmas. I will never, ever get tired of seeing how my boys face lights up (sorry) with excitement when he sees houses start to light up with decorations or how much joy he gets from attending events such as the Lights at Trentham Gardens – a favourite family haunt of ours any day, but seeing it lit up after dark with festive music playing at just the right level to not be overbearing takes it to another level for him.

The presence of those multi-coloured light up toys at this time of year make visual therapies that much more fun too.T omorrow we will be putting our decorations up, somehow I suspect our little superstar will be instructing us on where things need to go! Merry Christmas everybody, here’s to a peaceful, safe 2023.

Christmas Is Coming…

Like many families of disabled children, we view approaching holidays with a sense of dread. That may sound dramatic, but it is the reality for families for whom school is not just about education, but is about essential respite.

The needs of my child are so great that she requires at least one to one care at all times, most of the time we cannot be more than a metre from her. Other times, when her seizures are very bad, we have to physically hold her on a harness as she walks around to prevent injury.

Being tethered to your child like this gives a whole new meaning to attachment parenting.

Christmas for us evokes all sorts of emotions, of course there is some excitement, but it comes with a sense of heavy apprehension. Will we get a seizure free day? Will we be in hospital? What would that mean for our other child? The weight of it is tiring.

Like birthdays, Christmas can also be tinged with sadness, it can be a reminder of the things our little girl cannot do or understand, for example Father Christmas, or the anticipation of presents.

It can be exhausting to try to come up with present ideas when her development is not linear, there are only so many sensory toys one house can accommodate…

It’s important for families like ours to know they are not alone and there are some brilliant groups on Facebook that connect families and provide a supportive space for discussion. The charity Contact runs one of these.

Over the years I have learnt to try to let go of expectation or pressure when it comes to big events.

It’s a bit of trite line, but it really is just one day. In my experience of being a parent carer there is much joy to be found all year round in the good times.

I find those good moments, hours, days are turbocharged with happiness, perhaps of an intensity that typical families may not get to experience.

So, while it will always be a special occasion, Christmas for us will never be laden with the expectation that it will be a highlight of the year, that’s just as likely to occur on another day, when my little girl says a new word or has a really happy day. It’s in these times that real joy and celebration lies for us.  

Being A Parent Is Hard

Being a parent is hard. Really really hard. It is an absolute privilege but let’s be honest here; it’s hard.

I have no experience of raising a neurotypical or able-bodied child. My experience of parenthood shares some parallels, but also it is vastly different.

Many of the challenges parents of neurotypical children face will eventually be outgrown (hopefully). For us it isn’t just “the terrible twos” or “establishing a good sleep routine”.

There’s no calling a babysitter when we need a break, it isn’t that simple. Now I am not for one moment underestimating the challenges that all parents face; my point here is to highlight that a lot of the things you struggle with regarding babies or toddlers, will continue into childhood, teenagehood (if that’s a word), and indeed, adulthood.

As the child gets bigger they can become stronger, louder, more dangerous to themselves and those around them.

Thankfully for us, Amy’s frustration/crying spells are significantly better than they were a few years ago, however today I am still reeling both emotionally and physically from last night’s bed time.

Amy is 8 now. She has severe quadriplegic cerebral palsy. Everyday she battles against the horrible side effects of several medications, manages extra pain to those around her, and has to make herself heard and understood without being mobile or able to speak.

I often wonder the level of isolation and frustration she may feel. Even resentment.

I am a very sensitive soul and deeply protective of Amy. I know it’s not realistic, but I want every moment of her life to be absolutely amazing, joyous and full of love. I have developed so much empathy, compassion and most importantly patience, for her “meltdowns”. (I am not sure if meltdown is the word now. Is it a crisis? Either way, a period of intense distress.)

Last night all of that went out of the window.

As with most children, they know how to push their parents’ buttons. I know I could be a little horror as a child and look back on my actions (especially as a teenager) with embarrassment and remorse. However when Amy has one of these episodes, she isn’t aware that she is pushing buttons. In that moment she is completely at the mercy of whatever her brain is putting her through.

As I was saying goodnight I could see an absolute rage wash over her. She was consumed by it.

She was hitting out, kicking, screaming, trying to rip out her hair. 

All you can do at that moment is try to keep everyone safe and keep breathing. Remind yourself that this will pass. Remind yourself that this isn’t about you, it’s about her. She’s struggling right now and needs your support. 

Eventually she was out of breath, breathing fast, retching, and had a very high heart rate.

My instincts told me to check her blood ketones and glucose as previously she has responded to ketoacidosis in a similar way, and if it was that – then it’s a medical emergency.

As I tried to calm her and check her bloods she swiped the finger pricker out of my hand and the needle gashed my hand. Blood was going everywhere. I scrambled for a tissue but didn’t want to risk her falling from her bed. 

My second attempt – she kicked the lancet out of my hand meaning a loose needle was in her bed. As I attempted to locate the missing needle she kicked me in the face causing a fat lip.

When Amy’s moods are strong her movement disorder switches it up a gear and one unfocused moment will mean a nose bleed. 

By this point I was feeling fearful, upset, and quite frankly annoyed.

I shouted at her to sleep. The anger intensified. I suppressed tears and told myself to calm down.

In the end I needed to administer chloral hydrate to sedate her. It’s a decision I don’t take lightly and I only use it in extreme situations.

For days after I feel upset and guilty about it and need constant reassurance that I had no choice and that to leave her that distressed is unfair.

This morning she woke up, perfectly happy, as if nothing had ever happened.

The relief is palpable. My beautiful happy girl is back. Morning meds kick in and she goes sleepy. I hope that smiles will return later. 

I am still carrying the stress today. I can feel it all over my body. I wish I had been calmer and quieter. I never ever shout at her. It doesn’t help a stressful situation. But I know that often this is what happens to a parent when they are pushed.

I feel terrible now. Proper Mum guilt.

I worry if this will happen forever randomly. It only happens every now and then but when it does it knocks me for six. 

I had some spare time so I managed to squash in a dog walk and a gym session. I didn’t want to do either but I needed those stress hormones to subside. I feel better now than I did earlier.

I am focusing now on staying distracted, staying positive, and working to be a better parent tonight. I told her I am sorry and told her how much I adore her. She just smiled and laughed and touched my shoulder.

I suppose the purpose of this blog is to say – it’s okay to have a wobble.

It’s okay to struggle. You’re doing your absolute best and can’t be perfect 100% of the time. Today is very much a new day and whichever Amy returns home from school today I am going to be absolutely delighted to see her.

If you are struggling with similar – please don’t suffer alone.

If your mental health is being impacted make sure you get yourself to a doctor and see what support is available.

You can only be your best you when you are looking after yourself. I know that is easier said than done, but it’s so important.