How I Sleep Trained My Trisomy Toddler

I have hesitated posting my experiences with sleep training my daughter for fear that I may jinx it…. sleep is next to godliness, y’all, and I’m very grateful for the 8 hours I get every night.  It took me 15 months of sleepless nights to get there, but in case anyone out there is struggling like I was, here is how I solved my sleep problems.

Georgia NEVER used to sleep.  I would go days surviving on *naps* praying that someday she would grow out of it.  Finally, after desperation, we met with a sleep specialist who interviewed me about all of Georgia’s sleep problems…. she would reflux.  She would wake up screaming.  She’d take hours to settle back down.  She scream for hours.  She was a mean kid because she was tired.  I couldn’t put her down awake.  The list goes on & on.  The doctor put it to me very plainly…. if I couldn’t get Georgia to sleep through the night on her own, she’d have to be medicated if I ever expected to sleep again.
No, no, nope, and no way, Jose.
So, I decided, after FIFTEEN MONTHS of suffering, to sleep train.  Honestly, what did I have to lose?  I was already not sleeping.  She was already crying for hours on end.  Even when our pediatrician & neurologist suggested benadryl and/or melatonin, they didn’t help.  I had absolutely nothing to lose.

I spoke to several of my mom friends.  The ones who had typical kids suggested sleep training through some form of the cry-it-out method (CIO).  The moms who had developmentally delayed kids like my own all mostly insisted it was impossible.  Some said their children got better with age, but majority stated that Trisomy kiddos just do not sleep, and they’d been suffering for years.

No, no, nope and no way, Jose.

I read a million articles on Pintrest.  Every single one was guided towards typical kids, and various variations of CIO.  Some would say it wasn’t CIO, but for Georgia, it certainly would be.  I tried to find the most gentle version of sleep training, and then made the scary, but necessary, decision on when to start.

You can’t start if you have a vacation coming up soon or some kind of event that will mess up your routine.  I actually picked a week that I knew my husband would have to close every night because I knew he’d crack before I did.  I also picked a week where at the end, my stepsons would be there on the weekend.  I wanted Georgia to learn how to sleep even when there is background noise in the house.  It seemed unrealistic to expect it would always be quiet in our house after 7pm.

I also pushed her bedtime back to 9pm.  This is just what worked for us.  I like to stay up late & I like to sleep in, so 9pm-9am seemed doable as far as her sleep schedule would go.  According to my research, children at 15 months age should nap 1-2x daily, only around 2-2.5 hours total.  Their nighttime sleep should last about 12 hours, so that’s how I planned it out.
I initially started with a routine.  Absolutely key for Georgia.  Every day we wake up at 9am, on the dot.  Even if she tries to sleep in, I don’t let her sleep past 10am.  I know I’ll regret it later.  Naptime is inconsistent, but I have two rules… no napping past 5pm, and no napping for longer than 2.5 hours.  I need her to be TIRED when it’s time for bed, but not over-tired or she catches her second wind.  In the beginning, naps were absolutely necessary to a successful night, but as she’s aged that has changed.  Obviously, we attend SO MANY APPOINTMENTS so it’s impossible for me to really be consistent with naps, except for those two rules.

Our bedtime routine actually starts two hours before bed, sometimes three.  Around 6pm, I play Moana, her favorite movie.  This is kind of her independent playtime, where she can relax from whatever events we had during the day.  Around 7:30pm, we do dinner.  She dreads it, so we try to make it into a fun event centered around her.  We play music, sing, and even play with toys while she eats.  After, I let her finish her movie, or watch an episode of Mickey Mouse Clubhouse while I clean up after dinner.  I clean up all her toys from the day and do the dishes for the night, as well as get her bath ready.  After 20 minutes, she starts to whine, and I know she’s ready to start actually moving towards sleeping.  She takes a bath, and then we move straight to her bedroom.

Now this is where it’s insanely personalized to what works for us.  I heavily recommend making any changes you feel with help the transition and make your kiddo sleepy.

I lotion her up while I play music on her LeapFrog Violet stuffed dog.  This stuffed animal is her absolute favorite belonging, as it sings and talks using HER name.  I play the songs while I diaper her.  When it comes to PJs, I allow her to make the choice out of two pairs of what to wear.  I read that this helps kids feel more in control of their routine and I felt it was a great “therapy” moment for her.  Also, I use her love of Violet to practice her sign language and have her sigh “more” when she wants another song.  It’s what works for us.  Depending on the day, I make the call on whether or not she may need Benadryl or Melatonin.  I want to explain this for my Trisomy mamas.

Georgia has obstructive sleep apnea that only flairs up due to some kind of irritation that causes her nasal passages to swell.  If she is healthy (no allergies, no reflux) we do not use Benadryl.  We do use melatonin somewhat regularly, but I do try to avoid it, and give her the tiniest dose (1mL).  If we have a heavily stimulating day, where I can tell she is going to have a hard time winding down, she gets melatonin.

Back when we started sleep training, we would administer her meds in her bedtime bottle.  So after dressing her, I’d turn the lights down low (we use a lamp instead of the overhead light) and turn on her mobile, which plays about 30 minutes of music.  I would read a short book to her in the rocking chair, and then feed her the bedtime bottle.  At this point, fingers crossed, she’d become very sleepy.  In the beginning, I would not let her fall asleep on me ever. It becomes a crutch.  Right before she’d fall asleep, I would stop the bottle and put her down in her crib in her most comfortable position (tummy for her).  Then I’d put on soft music in 15 minute increments and cut the lamp off, to make the room totally dark.  She has two nightlights in her room as well.

The first night was awful. She cried and cried, while I sat right next to her in my chair.  I would time it, and every 15 minutes, I would stand up and pat her until she’d take a break from hysteria, and I would reset her music.  Right as I was about to give up and pick her up and rock her and apologize for being the world’s worst mom, she fell asleep.  I had read that if I had picked  her up and “cracked’ I would have had to start all over again.  I’m glad I didn’t.

Now as she woke up throughout the night, I would give her five minutes to fuss on her own.  After five minutes, I’d turn her music on again, and reassure her and pat her back.  I’d do that every 15 minutes until she fell back asleep.  I wouldn’t give her middle of the night bottle until she’d been in her crib for atleast six hours (halfway point).

The second night was the same thing, except I moved my chair a little further.  I still reassured her every 15 minutes and reset her music.  This time it took only 30 minutes for her to fall asleep.

Every night I did it over and over until I was sitting at the door.  After that, I would leave the room.  And every night got easier and easier.
Our routine has changed as she’s gotten older, but I’ve found that she now sleeps through the night most nights.  Even when she does wake up, I follow the same rules, and she can settle herself back to sleep.

I do not use teething as an excuse for letting her stay up, but when she is sick, I do not follow the usual rules.  The only rule then is that she cannot leave her room.  I’ll stay up all night and rock her if need be, and offer bottles.  But absolutely for no reason can she play or watch a movie until it is atleast 7am.

The change in her has been monumental.  She is a happier and smarter child.  She is more focus, and has hit more milestones at a faster rate.  Her reflux has almost entirely resolved itself, and she is off all daily medications.  She self-weaned herself from both her bedtime bottle & middle of the night bottle.
I’m obviously much happier because now I get sleep!  And who doesn’t love sleep?  It helped with my depression, my motivation, and my ability to be a mother and wife.  My husband and I also have a better relationship because she is more independent.

BY FIERCE GEORGIA ON MY MIND

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Eternally Sunny

Because sunflowers have been my absolute favorite for as long as I can remember, they are always my sweet hubby’s go-to “just because” bouquet. Each individual, bright, yellow bloom seems to just always make any space brighter. Yes, sunflowers and sunshine are always a must for the Cooper Cottage. Some days before the sun is even up, I visit each window and open the blinds before heading into the kitchen excited for my morning coffee and time in the Word. Throughout the day, I find myself anticipating the variety of ways that the sun will distribute itself throughout our “Peace Place”. Even on rainy days, the light of the day seems to just always give our home hope, reminding us that each day is a new day full of new mercies and even greater JOY.

“Enjoys interacting with others. Loves music.” – words beside the face of a sweet baby boy with the biggest brown eyes. Loves people and music?! Jared and I knew almost instantly that we were looking at the face of OUR baby boy. It was after yet another phone call with 1 of our 2 social workers that we learned that this little boy was diagnosed with Williams Syndrome. We were both unfamiliar with the disorder, so we immediately started to do research and confide in family and close friends, especially those who serve and are also parents to children with special needs. The day we received his file, I immediately texted my sister and asked her to meet me at the nearest Starbucks. As I sat across from her, she sipped her coffee anticipating a picture of the little one that would make her Aunt Mal Mal. When I showed her his picture, she smiled so big as even bigger tears began to fall from both of our eyes. I then went on to tell her more about him and his diagnosis. Being in the speech and language pathology field, I was interested to know if she knew much about WS. When I told her, she simply responded with the words… “eternally sunny”, which is how one of her professors defined WS, and she had never forgotten it.

“Approximately one in every 10,000 people worldwide lives with Williams syndrome, according to the Williams Syndrome Association. The rare genetic condition is characterized by learning difficulties and developmental delays as well as medical complications like cardiovascular disease. But people with the condition also tend to be highly social, kindhearted and have affinities for language and music.” according to Rachel Kassenbrock who goes on to share what families and individuals living with WS really want others to know.

  • “Individuals with Williams syndrome can teach us all that despite their struggles, they manage to smile and enjoy life. [That’s] something a lot of people forget. People with Williams syndrome have the most contagious smile and a zest for life that most people lack.” — Sylvia Navarro
  • “You will never meet another person like someone with Williams syndrome. [These people] are… the brightest souls on earth with the biggest hearts.” — Tammy Barry
  • “Not all individuals with Williams syndrome are the same. They are all unique and have a wide range of abilities. Their personalities and behavior vary.” — Jessica Fountain Peterson 
  • “The sunshine and sincere, genuine love for life and for people that radiate in individuals with Williams syndrome is indescribable.” — Erin Kaplan Rupolo
  • “The most difficult challenges will be far outmatched by the greatest rewards they bring into your life. Every accomplishment and milestone is met with immeasurable joy that you would never experience with anyone else. They will surprise you with their love, generosity and happiness when you least expect it, and you will be infected by it.” — Richard A Williams Jr.
  • “My son has such a true deep love for people, sometimes after only knowing them a few minutes. I wish more ‘typically developing’ people were the same. Can you imagine the peace and joy that would fill the world?” — Maggie Garrison
  • “Williams syndrome is a complex collection of heartbreak, heart-busting joy, extreme physical and cognitive challenges and amazing talent. [People with Williams syndrome are] extraordinary human beings with such profound capacity to love and ability to express happiness that the strangers around them often stop in their tracks and smile.” — Nancy Paslay
  • “[Many people with Williams syndrome] have great memory skills, crave and excel with a set routine, love any and all get togethers because it nurtures their huge social side. The world is a much better place because of them.” — Marianne Mepham Newton
  • “Don’t think [Williams syndrome] is the end of the world. It’s the beginning of a long adventure.” — Delores Carr

“You are My Sunshine” and “Can’t Stop the Feeling” have become tunes daily sang and danced to around the Cooper Cottage as we continue to be so humbled and honored to have the privilege of stewarding this sweet soul, that he may experience the glory and unconditional love of our Heavenly Father who knit him together, fearfully and wonderfully. Our God has always known him and sees him even now. He is sovereign over our sweet boy’s little life as he continues to orchestrate all things for his good and his glory. My sweet, little sunshine, you were wished for, longed for, prayed for and wanted.

“You have given me a greater JOY…” Psalm 4:7 

BY MORGAN COOPER

You Received a Diagnosis, Now What?

BY JENNA GINES

You received a diagnosis? CONGRATULATIONS MOMMA!!! 

You just hit the jackpot!!

And you’re thinking… wait, what? My child has a diagnosis. How is that winning the jackpot?

You’ll see…

I know you were headed to Italy but that’s not where you landed. Welcome to Holland Momma! I know you’ve never been here & it’s a new place. I know you don’t know what to expect & that can be scary. I know how frustrating it can be when your plans get changed. 

But it’s so beautiful here. You’ll meet people you never would have met. You’ll join communities you never would have joined. You’ll learn & grow in ways you never would have.

This baby (or child) was sent to you for a reason. God knows you’ve got this!

Let go of the stigma, let go of the fear, let go of all the unknowns… 

I know there’s plenty.

And look around. It’s beautiful here. You. Your baby. This life. It’s beautiful.

I want you to breathe. I want you to cry. I want you to mourn the life you thought you had. I want you to mourn the child you thought you had.

And then I want you to accept it. Accept this new life. Accept that your child is their own, unique person, on their own timeline and it’s perfectly okay.

It’s okay to be different. 

It’s more then okay. 

It’s great.

Different teaches us diversity. Different teaches us how to love unconditionally. Different teaches us a lot.

So unpack those bags Momma & make yourself at home.

This is your new home & it’s so good & so beautiful. It’s just different. 

And that is okay.

You just hit the jackpot!

Chromosome 2p Deletion and 10q Duplication

Rhegan-Sofia’s dad carries a balanced translocation between 2 and 10. We found this out whilst pregnant with her older brother Roman-Jay. Roman had a blood test the day after he was born and he doesn’t have or carry the translocation. 

My pregnancy was normal, we had a growth scan where they said her head was slightly smaller than average but they told us that it wasn’t anything to particularly worry about. But everything else was relatively normal and we delivered our beautiful Regain-Sofia on the 16th December 2017. After giving birth to Rhegan, I noticed her ears were quite low down. She also took a fair bit longer to open her eyes than her older brother did but other than that she wasn’t showing any major risks at this point.

The genetic team decided not to take Rhegan’s bloods as her oldest brother wasn’t affected when he was tested. We were allowed to take her home with us the following day because both I and Sofia were doing well.

At a couple of days old, during an appointment, they said she had positional talipes. Rhegan was given a few weeks of massages and this was soon corrected. Even now, she still turns her feet in at times. We first noticed her regularly sticking her tongue out at times as a newborn and that has never really stopped since.

Genetics have told us that her arms are slightly short. This was evident when we were always having to roll her t-shirt sleeves up and she has never been able to put her hands on the floor whilst sat up straight.

The first time the genetic team saw Rhegan was just at a few months old. She wasn’t behind in anything apart from the fact she couldn’t bare weight in her legs and she was slightly overweight. This wasn’t enough for them so they again decided not to take her bloods.

At 6 weeks she developed bronchiolitis. She hasn’t ever really been the same since if I’m honest. She’s been in hospital 3 times with her chest and is always in and out of the doctors being prescribed inhalers. She’s pretty much always chesty. We have currently learnt children with her changes commonly suffer from respiratory and chest infections. 

I knew for sure in my mind Rhegan had been affected by the translocation when she wasn’t meeting milestones, always had her tongue out and had started to cover her ears from sounds. She never liked her hair being touched or brushed, always had loads of hair, and has always got very frustrated easily. She’s never been one for crying but if she was frustrated she would scream LOUD. She’s always been disturbed in the night too she still wakes up more than twice a night. She took longer to smile and giggle. She’s even been overweight since she was a couple of months old.

Genetics saw Rhegan again at 10 months old. By this point, she was behind in a few of her milestones already. She couldn’t bare weight in her legs, she couldn’t pull herself up, couldn’t get in a crawling position let alone try and crawl or sit. They decided they didn’t want to see her for another 12-18 months after comparing her against other children with the similar genetic changes.

Rhegan couldn’t sit until 9 months old but was able to sit up steadily at 14 months old. Even now she can wobble over the odd time. She finally got into a crawling position 4 days before her 1st birthday and into a still crawling position at 15 months old.

However, I knew that something wasn’t quite right. We mentioned everything to our doctor. and the doctor told us that the ears, tongue and prominent forehead are linked to the genetic changes. We were pleased when she finally referred us to the paediatric team.  

We seen the paediatrican for the 1st time when Rhegan was 11 months old. She couldn’t believe that the test wasn’t done sooner and wanted genetic blood testing done immediately. She also put in for a hip x-ray, dietician, Physiotherapist, ear test and eye test. 

The hip x-ray results showed that one hip joint was smaller than the other. The eye test was normal but another check-up is required in nine months time. The ear test results showed slight loss so she was referred to a Ear, Nose and Throat clinic. The dietician was happy that her weight was starting to even out by the time we saw her. And her Physiotherapy journey has been every 4-6 weeks since January.

 We had the bloods done on the 22nd november 2018 and was told by a pediatrician on the 26th February 2019 that Sofia does in fact have an unbalanced translocation and duplication and deletion. 

We have recently seen the genetics team following Rhegan’s diagnosis. To be honest, finding out she has the unbalanced translocation resulting in a 2p Distal Deletion and 10q Duplication was a bit of a relief.

Since starting physiotherapy, we have already seen a lot of improvement in Rhegan’s physical movement. She is currently unable to stand aided for more than a few seconds so we cannot wait to get her a standing frame which will also help to support her bowels and chest.

Rhegan is a beautiful happy little girl and loves to laugh and giggle. She tries her hardest to do things and we will always support her the best we can! She loves sensory things, bath time and she loves cuddles and kisses too! She also loves if people blow raspberries on her and loves doing it herself. She’s a credit to us all and adored by so many.

We’ve since signed up to UNIQUE the charity for rare chromosome diorders. They have been truly amazing! And we have learnt so much already!

BY RHEGANS CHROMO JOURNEY

Embracing and Celebrating Autism

Anyone who truly knows me, recognizes I’m not one to repress my feelings about anything. I’m especially candid about the difficulties of parenthood. 

Then, in our case, the addition of having a special needs child has caused me to become incredibly transparent. 

At times, I’ve fallen victim to pitying myself and our life. Every outing comes with meltdowns, tantrums, and/or acts of aggression. Sometimes I know exactly what set our daughter off and other times I don’t have the slightest clue. Her sensory sensitivities play a huge part in this. She may have an unusual or intense reaction to certain sounds, smells, tastes, textures, lights and/or colors. This coupled with her limited vocabulary makes it hard to determine her needs. 

Truthfully, my difficulties in parenting are minimal compared to Brynn’s adversities. Along with Autism Spectrum Disorder, she is developmentally delayed. Nothing comes easy for her. Things that appear simple for most children, are extremely trying. 

Though, her physical challenges frustrate her at times, her emotional struggles and needs appear to be far more problematic. She is stricken with separation anxiety and is highly averse to transitions. Socially, she absolutely loves people, maybe a little too much. She has zero social boundaries or cues. She has a lot of love to give, which is a wonderful quality, but she can’t grasp not hugging and kissing everyone she meets. 

The remarkable thing is, with all her challenges, she is a happy, sweet girl. Yes, she has some behavioral issues. Yes, most things are a struggle for her, but she finds happiness and joy amid her hardships. If she can do that, then who am I to ever pity myself?

As I’ve began to look at the positives of Autism, I’ve been able to embrace and celebrate our life.

With that said, let me share some of my favorite things about Brynn:

  • Her strong capability to love
  • Her concern for others
  • Her observational skills
  • Her love of music and taking comfort in us singing to her
  • Her ability to retain information
  • Her love of dresses
  • Her tenacity and resilience (ok, this might be a love/hate relationship for me)
  • Her acceptance of others
  • Her lovely smile
  • Her compassion
  • Her loyalty

BY MELICIOUS MAMA

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Mitochondrial Disease

When you have a child with a life-limiting illness and young life expectancy there’s a lot of emotion and heartache around the diagnosis. I’ve never hidden the fact I went through a phase of grief. When parents contact me now having received a similar diagnosis, I always tell them to allow the grief in if it’s there. I believe it is part of the process. For me it was important to allow myself time to feel sad because that’s ok. I think that other people in our situation feel sad because you hear a lot “your child ‘won’t’ be able to do this or that”. As with everything, if it’s put in a negative way you can only think of the negatives. I spent a long time always seeing the things that he wouldn’t be able to do, the things that other families took for granted which would always be missing from our lives.

We are now (nearly) three years on from his diagnosis and, thankfully, he is a determined little boy and seems to be driven by his peers’ achievements. He laughs now. He’s such a happy, cheeky little boy. Although we don’t push him, he does want to take steps and walk. Even though we were told he would never walk. He does walk. He uses a walking frame, but he does walk. He wants his freedom, to be able to explore his environment and to have a say in where he goes. Which. is. HUGE! 

You see, when we received our son’s prognosis and we were told a list of what he ‘won’t’ or would be ‘unlikely’ to achieve but it was never explained to us what our child would accomplish, and that he would accomplish so much. Nobody told us that when they said he would never be able to walk that they meant unaided but there is lots of amazing equipment out there. That actually he would walk but it would just look a bit different and, actually, he would learn to successfully navigate his world. They were right in that he wouldn’t (can’t) talk but I took that as he wouldn’t be able to communicate full stop. Nobody told me that he would be extremely communicative. That he would find his index finger and use it to dictate where he wants to go, what he wants to watch on TV or what he wants to eat. Or that he could bang his hand on the table yelling ‘mo mo mo’ when he wanted more of something.

Nobody told us that his face would light up when he heard music or that certain songs would get him really animated. Or that he would love books and want to read the same ones over and over. Nobody told me that he would love The Gruffalo, Thomas or Something Special and always laugh at certain parts of the same episodes. Or that he would love cooking and even learn the sign to say he wants to cook. Nobody told me that he would go to nursery and have some normality in his life, and he would love it.

Or even that he could say ‘I love you’ with just his eyes and when he decided he was going to hug it wouldn’t be over until he decided and that it would be the best thing ever.

So many beautiful moments that I didn’t know would come because I was consumed with the grief of what wouldn’t. Nobody told me that he would teach me so much about life, about perspective and about myself. That he would make me grow and learn to look at things differently. Most importantly, at that diagnosis appointment, nobody told me that our son is utterly incredible, that he would achieve great things only in a slightly different way, and that he had such capability. 

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BY FREDDIES MUM

Langer Mesomelic Dysplasia

Our journey began at our routine 20 week anatomy scan. I knew when the doctor walked in and didn’t say anything as he checked for the heartbeat that something was wrong. He sat down, looked us right in the eye, and said, “We found some abnormalities.”

I went in for a scheduled c-section at 37 weeks at the recommendation of my OB.  I was scared, but strangely calm.  Everything went smoothly with the surgery, but they did end up taking him to the NICU due to concerns with his breathing.  I remember the blurry face of one doctor trying to tell me everything that was happening, but all I could focus on was my baby in the background. 

Our pregnancy journey was as uneventful and ordinary as it could have been until discovering that our son had shortened limbs.  This meant quite a few trips to the hospital for ultrasounds. The upside to so many ultrasounds was I got to see him more, I even saw him yawn and got to see his little hair.  He was always measuring small, but healthy in every scan we did.  They strongly pushed for me to get an amniocentesis for a possible pre diagnosis, but I declined.  I knew in my gut it wouldn’t do any good.  Turns out I was right.

Thankfully, he was only there for a day before they returned him to my hospital room.  And then I saw his tiny, perfect face over that curtain for the first time, and all that worry and stress just melted away. The nurses were absolutely smitten with him and his full head of blonde hair.

The doctors‘ at Shriner’s were surprised he’d been misdiagnosed.  They told me individuals with Langer Mesomelic Dysplasia present in a very specific way, and Tobias was checking all the boxes.  LMD is inherited recessively, and is marked by a SHOX deletion on both the X and Y chromosomes.  This results in extreme shortening of the arms and legs.  My very first question for them was, “Will he be healthy?”  They said he should live a long, happy, healthy life.  I replied, “Then that’s really all that matters.”

Looking back now, it was all kind of a blur after that.  There were so many appointments, so much talk of what it COULD be, but never what it actually was, nights of furious googling to see if there was anything I could have possibly missed.  They kept preparing me for the worst outcome, so I braced myself for just that the day they wheeled me in for my scheduled c-section.

They took x-rays and blood at the hospital, and a couple weeks later came back with a Leri-Weill dyschondrosteosis.  We accepted that diagnosis and just go on with our every day lives!

It wasn’t until our first trip to Shriner’s where they actually told us our son has Langer Mesomelic Dysplasia.  One more genetic test later, and here we are!

Right now, it’s just a day to day process.  Tobias turns a year old this month, and has been happy and healthy since the day he was born.  He has to wear splints nightly, to help straighten his arms and fingers out, with the goal being to avoid surgery.  He can’t 100% sit up unassisted yet, and he’s not walking or crawling, but those things will come with time.

I couldn’t be more thankful, more blessed to have this little boy in my life.  I believe whole heartedly the universe knew what it was doing when it gave him to my husband and I.  He is my love, my light, and my everything in between.

BY MISSUSDEEDS

Things Doctors Don’t Tell You about Having a Child with Cerebral Palsy

Things that the doctors don’t tell you about having a child with cerebral palsy….

Is what this blog was going to be about. I’m on a few different support groups for parents of children that have disabilities and they are great! They really are and it’s so good to have support from others that are going through a similar journey. One of these groups that I’m on is just for parents of children that have cerebral palsy so I wrote a post telling them the title of my next blog and could they help me out! I asked them “what do the doctors not tell you about having a child with cerebral palsy”

Well, I wasn’t prepared in the slightest when I read through the comments that people left.

I’ll give you a few short examples

“They don’t tell you that it will get will get worse”

“They never told us that they would have constant muscle pain”

“The heartbreak you feel, and then guilt for feeling that way”

I’m not saying these things aren’t true but I was really hoping for a more positive outlook on cerebral palsy, there were maybe one or two reasonably positive comments but is it really that bad?

Yes, and no.

I totally understand why these people said these things but you just have to look through Wilson’s photos and videos to see what a genuinely happy little boy he is. People with cerebral palsy can be happy and lead relatively normal lives if they want to! There will be obstacles and they constantly have to work harder than every one else but that doesn’t stop happiness.

If they see positiveness then that’s what they’ll learn. I would never, ever wish cerebral palsy on anyone and it does upset me that Wilson has to go through so many challenges but he is an absolute inspiration just as many other children with cerebral palsy are too, the outlook Wilson has on life is incredible and he has made me see the world differently but not in a bad way! There is a lot of changes that still needs to be made to make the world a more accessible place for people with disabilities but we can keep fighting for that! In the mean time, don’t sweat the small stuff. Make sure you laugh, at least once a day. Wilson makes me laugh every single day, he’s such a comedian!

Here’s what I say that doctors don’t tell you about having a child with cerebral palsy..

It will make you a better person, truly. It will build your confidence, because believe me, you’ll need it with all the appointments you go to! It will make you realise how precious each little achievement is, you’ll cry with joy the first time your child does something so small such as bring food to his mouth because in a child with disabilities that is a huge deal!

You’ll also learn to have the patience of a saint.

We all have our hard days, keep smiling

BY WILLING WILSON

Girls with autism- the other side!

Right so one of my main reasons for starting my blog was because I was so so sick of reading memes or posts aimed at girls on the spectrum that didn’t apply to Darcie in any way shape or form! Most will tell you that girls with autism are academically gifted, make friends easily, can mask their feelings and fit in. Darcie is none of the those and that’s absolutely fine! She’s fantastic just the way she is but I hate that girls on the spectrum get pigeon holed and barely anyone talks about this other side where Darcie sits. Sooooo that’s what I’m here to do!

Darcie is non verbal, she can’t use sentences or communicate with you verbally but if that girl wants something damn she’ll grab your hand and take you to what she needs! She sometimes uses echochlia which basically means copying words or phrases from favourite t.v shows, films or songs. If she does say the odd word it’s never in context, just totally random but I love hearing that voice when she does! What she does do though is count to 10! Bloody 10! That too was copied from Peppa pig (the less said about her the better). Darcie uses picture exchange cards (pecs) at school, she’s still learning and will only use them if she really wants to! There’s no making that girl do anything she doesn’t want to! She absolutely refuses to use them at home, but again that’s fine because I know how to communicate with her. For the outside world though it’s something I’d really love her to get a hang on, makaton too!

Darcie is still in nappies. Another thing that not many people really speak about in older kids, not sure why not though! She has no self awareness what’s so ever and actually the level she functions at, at the minute is 8-20 months old (she’s 5) The resources are so expensive! Seriously people see us coming! They stick ‘sensory’ ‘autism’ ‘disability’ in front of something and sell it for twice as much, it makes me so angry! We get help now with Darcies nappies (she gets 4 a day prescribed) but before this it was costing me a ridiculous amount of money, I obviously still have to buy extra because how the hell  can I tell her she’s only allowed 4 nappies a day?!

SLEEP! I can deal with absolutely anything autism and life throws at me but my god the lack of sleep is a killer! Especially in the early days I felt like i was barely getting through the day and sinking quicker than I could swim. Not so much these days I’m used to it all now and I wear the half dead look  quite well! Darcie’s body doesn’t produce melatonin which is what tells our body to go to sleep, so she has to take prescribed melatonin. For the most part it works, but sometimes she’s still up hours later or sleeps for a few hours then is up all night long. Hit and miss!

Just to point out, I’m not saying that the girls that are academic, make friends and do well in social situations are any less than the girls like Darcie. It’s just that my girl and others like her very rarely get spoke about meaning obviously no awareness for that side of it! Hence my blog.

I absolutely love learning about autism and everything that comes along with it. Knowledge is power right?! I made it my mission when Darcie was diagnosed to make myself an expert in her, her needs, her autism. Because it is hers. Like the saying goes, if you’ve met one person with autism that’s it, you’ve met one! Each person is as wonderfully different and unique as the next, no two the same!

BY DARCIES VOICE AUTISM MAMMA


Pyridoxine Dependent Epilepsy

Jack is so many things. He’s capable, he cute as a button, he’s smart and he’s stubborn, he’s affectionate, he’s friendly, and he means so much to many people. But, before I even got to the chance to know and love my son, I was given a limit on his life and a limit on my time with him. With a life-limiting + incorrect diagnosis and poor prognosis, my 11-week-old was in a fight for his life. You would never believe it looking at my big healthy boy today, but he almost wasn’t here. He has a rare disease that was almost missed.

Jack saw over 20 different doctors–specialties like Neurology, Human Genetics, Infectious Disease, ect.–in one of the US’ leading Children’s hospitals. Jack’s rare disorder, known as Pyridoxine Dependent Epilepsy(PDE), was overlooked for 6 solid months while he struggled and suffered with intractable seizures and a subsequent brain injury. This slow struggle towards a correct diagnosis is not uncommon in the rare disease community, and in fact, Jack was diagnosed quickly for having a rare disease. According to Global Genes (my go-to for all things rare and genetics related), the average time it takes for a rare disease patient to get a correct diagnosis is 4.8 years. My son could not have survived this long without the correct diagnosis + treatment and that is why I tell as many people as will listen. Awareness is everything in the rare disease community, especially when there is a treatment that is absolutely life saving like Triple Therapy for PDE.

I was thrilled when I was told we would be swapping out (slowly of course) 5 different AEDs (Phenobarb, Keppra, Topamax, Fospheny, AND the regular use of diazepam) for Pyridoxine (B6) and a new diet. For my non-neuro friends, I used the “pet words” for some of the AEDs (Anti-Epilepsy Drugs) because it’s one way we exert a little control over the meds. (ha!) WHAT? Is this even real? We went from absolute devastation, being told that our infant son had mitochondrial disease and his brain would “continue to atrophy until he passed away” to he has an Inborn Error of Metabolism and needs to see Genetics and a Metabolic Nutritionist ASAP. So he is going to live? YES! I learned the hardest way possible that doctors are not always right; they do not get to write the story of your child’s life and the fight is always worth it! I know many readers already know the entire story, but the Mito diagnosis was Jack’s second misdiagnosis. When he was just 10 days old and in the PICU after being life-flighted, we were told that he had a Hypoxic Ischemic Encephalopothy (HIE). There were pieces of Jack that fit with each diagnosis at the time so the neuro team did what they could with the information available at the time. However, the information could and should be better for inborn errors in metabolism (like PDE) that can be tested and added to the newborn screening process. As the mother of a kiddo with a rare disease, I can tell you caregivers fight, scrap, and claw for every inch of information that will help our children. And the battle is always worth it.

All of this being said, I have learned SO MUCH about PDE and want to give an update on Jack Jack. This has taken me so long for a few reasons: I want to thoughtfully explain PDE in a way that does the patient’s justice AND this update involves a subject that makes me most uncomfortable–intellectual disability. We have been prepared for many things with Jack; from the beginning we were prepared for a severely brain-injured child with a completely unpredictable future, next we were prepped (by doctors) for our son to die, then we were told his true diagnosis and prepared for unpredictable delays. Whew! I’m grateful for, not disheartened by, these diagnoses now because they made me fight like hell for my son. Jack is now 2.5-years-old and will be 3 in July. He has carried and still carries many of these diagnoses: PDE, ASD, Apraxia, SPD, GDD, Hypotonia, CP, etc. Last month Jack had two major appointments that really helped me understand, come to terms if you will, with what my son’s diagnosis of PDE truly means (at least for him, each child is so different). Here’s the medical portion: Jack is sometimes (hopefully not all the time) having seizures while he sleeps. His EEG tells his neurologist that is brain is processing at a little bit of a slower pace than typical kiddos while he is awake.

These were both things I was unprepared to hear. Jack is currently on 300mg of Pyridoxine, which is a lot considering the main side effect is peripheral neuropathies. Most people need only 2mg of B6 per day just to put that in perspective. Jack is actually doing quite well currently and on an upswing with development so we aren’t interested in adding an AED at this time. My main question that I kept coming back to was, “will Jack have an intellectual disability?” I don’t know why I didn’t really prepare myself for this portion of Jack’s disorder; after all, it is written quite clearly that PDE patients are likely to have a learning disability. The idea of the gap between Jack and his peers widening absolutely crushes my heart, but I don’t have much time to mourn so on we go! Another interesting development in Jack’s diagnoses is that both the child psychologist and neuro-development team that Jack saw do NOT think Jack has ASD.

They said that Jack has some very severe delays, most severe being his gross motor skills. They said that Jack struggles to orient himself with other people because it’s all he can do to hold himself up. He does not make good eye contact because his neck and core are so weak. He wants to make eye contact, they say, but it’s just too difficult because he is so big, yet his tone is so low. Sometimes he just looks like all his parts don’t work together quite right, but it’s what make him Jack Jack! Needless to say, these appointments have clarified and sharped so many things for me.

Jack’s incredible neurologist, Dr. Koh of Children’s Healthcare of Atlanta, told me that while many of those above diagnoses apply to Jack clinically, he doesn’t need them in addition because he has the “unifying diagnosis” of Pyridoxine Dependent Epilepsy. PDE, she explained, is a “metabolic encephalopothy”. What the hell does that mean? It means that Jack’s brain works differently at the metabolic level, causing him to develop differently than neuro-typical children. When this “metabolic encephalopthy” was not being properly treated, it caused damaged to Jack’s brain.

The damage, or what they like to the “dull spot” on Jack’s MRI explains his ataxia, but PDE explains everything else. PDE is rare so there isn’t much written, not many resources to compare, and not enough kids diagnosed and treated properly to predict what Jack’s future looks like. I know all the rare patient caregivers can relate to that. Interestingly, Jack’s doctors (not just Dr. Koh) say that PDE is really the only diagnosis Jack needs because PDE implies developmental delays, epilepsy, hypotonia, etc. While I have always understood this, I have also spent so much of my time fighting with insurance for early intervention services and keeping ER doctors from killing my son because PDE isn’t an instantly recognizable diagnosis.

An insurance representative once said to me, “I don’t understand why your son needs so many therapies, it’s not like he has Down Syndrome or something”. I hung up immediately so my anger for my son and then my friends and loved ones with Down Syndrome didn’t vaporize him through the phone. Maybe, hopefully it still did. Dr. Koh basically told me that it’s my job to change this and make people recognize and remember PDE. So remember this: PDE is super similar to PKU and both can kill you if not properly treated.

BY METABOLIC MAMA

Driving across Europe- Budapest

A couple of days relaxing in Croatia was a must before heading on over to Hungary because we knew there was going to be so much to see and do over the next few days! It took approximately 6 hours to drive from Croatia to Budapest which is where we stayed in Hungary.

We stayed in Budapest for 3 days but we could have easily stayed for more! We could not believe how much there was to see and do, we barely had enough time to eat or drink. Budapest is a great place for families, you can access mostly everything easily with pushchairs. The only attraction that was slightly difficult with a pushchair was the castle because there was quite a few steps with not many ramps!

Buda Castle:

Fisherman’s Bastion is a terrace in neo-Gothic and neo-Romanesque style situated on the Buda bank of the Danube on the hill around Matthias Church:

Széchenyi Chain Bridge is a suspension bridge that spans the River Danube between Buda and Pest:

Matthias Church is a Roman Catholic church located in Budapest, in front of the Fisherman’s Bastion at the heart of Buda’s Castle:

The Hungarian Parliament Building:

Danube Promenade is one of themost iconic symbols of Budapest which has a touching memorial to Jewish victims- with iron shoes. 

Margaret Island is in the Danube River, between Buda and Pest. This is where you will be able to find the Margaret Island’s Water Tower and Margitsziget Water Park:

Margaret Island’s Water Tower:

Magitsziget Water Park:

We know one of the main things to do in Budapest is visit one of their hot baths but we had our 3 year old with us so decided to go to Margitsziget Water Park at Margaret Island instead which was way more fun any way. We found Margitsziget which is a spacious water park which has lots of space for lounging around, many slides, swimming pools and even hot baths- you can easily spend a day here alone!

She Doesn’t Look Autistic is Not a Compliment

Please take note…


‘She doesn’t look autistic’ is not a compliment.

‘But she’s so pretty’ is not a compliment either.

‘She can’t have autism, she looks normal’ is even less of a compliment and is in fact hurtful.


‘Normal’ is a figment of peoples imaginations, it does not exist. Insinuating people with autism aren’t normal is beyond hurtful. Get to know the person, look beyond their disability and see them for the wonderful individuals that they are. If you don’t, believe me you are missing out!


Autism does not have a look, it’s an invisible disability. That simply means you can’t tell that person is disabled just by looking at them. You may notice somebody has autism because they are wearing ear defenders or because they are stimming or because they are in a buggy or a wheelchair but not by how they look. They don’t have a flashing neon autism sign coming out of their heads, they look like everyone else… if anything just more beautiful.


Our daughter is perfect, quite simply stunning, with the biggest smile and huge brown eyes, that’s how she looks, that is how I’d describe her looks and features, not autistic.
Isla looks like Isla, it really is that simple.

BY ISLA’S VOICE

To Label or Not To Label

I think this is a very personal opinion and your view will completely depend on the journey you have taken. However, for me, I was incredibly grateful for that label, even though, at the time, it truly broke me.

Deep down, I knew from the moment Aiden was born that there was something different about him. As he grew that difference became more apparent and it felt like I spent my life making excuses for him.

‘Sorry, He’s just tired’

‘Sorry, I don’t think he heard you’

‘Sorry, he doesn’t understand’

These excuses changed after my acceptance, to:

‘That’s just Aiden!’

‘In Aidens world it works like this…’

‘Aiden just has his own set of rules’

The hardest part was trying to justify everything he did or we did because of his behaviours. Really what I was trying to do, was gain acceptance from others. Without a diagnosis we had no answers or reasons for his or our behaviour towards him and more importantly, we had no guidance as to whether what we were doing was right.

His label of Autism felt like a massive relief! A relief that I wasn’t going mad, a relief that there was a reason to his extremely difficult behaviour, a relief that there was a reason for his differences. It was also a relief to know that I could now learn to understand him and that ultimately, I could learn how to help him.

However, with relief also came an abundance of guilt and grief. (Which has never gone!)

Guilt – what did I do to cause this? Also, guilt about how I’ve dealt with his behaviours up till that point – maybe if I had responded differently, I wouldn’t have caused him so much distress.

And grief! Well this is complex, because nobody has died. However, the feeling you get after retaliation sets in, that your child and your relationship with your child is never going to be the one you had planned and it is said to be the same feeling as grief!

These feelings then create a cycle which leads back round to guilt again! You feel guilty for feeling like that! ‘I just wanted a ‘normal’ child!’ You envy others with their ‘perfect’ children – because they have the life you had planned! That doesn’t mean you don’t love your child (on the contrary, I think I love him even more!) but you grief for that something that you never had and will never get and feel guilty for even thinking it!

But without that label I think I would have gone mad. I would not have known where to start with helping to support his needs because according to society he didn’t have needs and I would not of been able to grow in my ability to understand him.

It is easy to be caught up in the negativity that surrounds a so called ‘naughty’ child and it is easy to forget how this negativity affects not only their, but your self-esteem.

Professionals say you don’t need a label to access support! That is utter nonsense! Without that label Aiden was a ‘naughty’ school boy struggling to fit in to a mainstream school. I was a bad parent and I was ousted by other parents within my community.

With that label Aiden became a complex little boy who needed specialist provision. He was given access to therapies and social support to enable him to fulfil his life ambitions and to achieve an education and future he deserves. Other people had a name for his behaviour (I won’t say they understood) but with that label their was a degree of acceptance because there was a reason for his behaviour.

BY SEND MUMMY BLOG

Is a Stay At Home Parent a Real Job?

When I was growing up, I always thought that I would be one of those mothers that would have it all figured out. I would graduate, get a job, get married and then have children. The truth is my life didn’t happen that way. I fell pregnant at 19 and didn’t it half take me by surprise.

I can’t lie and tell you all that everything in my life has planned out exactly as it would have done if I hadn’t of fell pregnant. But I am glad. I am glad that I am a mother. I am glad that I mean so much to someone so little and vulnerable.

I have been choosing GCSE’s, A-Levels and Degrees accordingly, since I was 16, to pursue my career choice as being a special needs teacher. Falling pregnant at 19 did not stop me, I finished university and I even went on to do my Masters in the Theory of Education.

We as a family have been through so much over this last 3 years. We have a little boy with a rare chromosomal abnormality that has a huge impact on our life. They barely know anything about it and sometimes it feels like they are using our son as a guinea pig. I struggle to hold a job down because of the amount of hospital and doctor’s appointments we have every month for our son. I have been battling with depression over everything that has been going on and I have recently been diagnosed with Fibromyalgia.

Things out of my control have stopped me from working. I am a driven person and I would love to be out working but at the moment, it is virtually impossible. To be honest, I do not need an explanation as to why I am not working because its our choice. People are quick to judge stay-at-home parents for being too lazy but working parents too have a lot of judgement for leaving their children all day with childminders. You can’t do right for doing wrong. So my advice would be to do what makes you happy.

Quite a lot of people think that being a stay-at-home parent is an easy option for parents that can’t be bothered too work. And i’ll be honest, so did I before I had a child. Being a stay-at-home parent is many things but easy isn’t one of them. It is the most rewarding job in the world but it can be frustrating, challenging and even hard work. Yes I said work. Just remember being a full-time parent is a job. It’s the same as being a childminder, nursery nurse, or even a teacher. We too are helping children develop and grow and be the best they can be- just in the comfort of our own home with our own children. So yes I am living my dream job after all. I am a teacher to my own child every single day.  

Are Doctors Advising That We Shouldn’t Have Another Child?

Our son as you know has XQ28 Duplicated Syndrome which is a rare chromosomal abnormality. At birth, our son was in Neo-natal for his low birth weight, temperature and sugars. During his time in neo-natal, they noticed that his head conference was small. Cut a long story short, this led to the diagnosis of his XQ28 Duplicated Syndrome. 

Since then, we have had a meeting every year with a genetic specialist which supposedly is someone for parents to talk to and feel comfortable sharing their experiences and feelings with.

As mentioned in my last blog, in our first meeting we were told that our son will never be able to sit, crawl, walk and talk. Our son proved doctors wrong and has overcome every milestone to date. We have had quite a few obstacles along the way but that’s what makes our life so interesting! Apart from that we have a happy and healthy growing 3 year old.

Our previous appointment, which was a few months ago, was what really left us speechless. I had so many amazing things to tell the specialist about how much he has already achieved but the specialist didn’t show any sort of interest. He didn’t look at him. He didn’t play with him. He didn’t even ask how he was doing.

The first thing the specialist said was:

“I gather you don’t want another child like Joshua, so I suggest you have no more children. If you do fall pregnant, I will make sure you are able to have an abortion immediately.”

I remember just staring for about 10 minutes in pure devastation at what just come out of his mouth. Not only had our son been rejected from a childminder for having ‘too much challenging needs’ but our own specialist was not even accepting.

Firstly, what exactly does he mean ‘Like Joshua’? If he is referring to the XQ28 then that is just a small part of what he is about. It doesn’t define who he is. His personality is so much more than that. He is loving, compassionate and hilarious. We get the privilege to see these special traits every single day!

I only had one thing to say to that specialist and that was:

“I wish I could tell you it was nice to meet you, but I would be lying. No need to book another appointment in because we won’t be seeing you again. You should be ashamed of yourself”.

I decided from that moment, that we most certainly do not need any appointments that are going to judge our son on what he can and can’t do. We are going to celebrate all the things he can do and nothing else matters. Our society needs to start understanding that every child is different that’s what makes us unique. Wouldn’t it be boring if all of us were the same?

I have been deliberating for weeks now about posting this because I didn’t know whether I felt embarrassed or ashamed. The truth is, I actually feel proud. I feel proud that our son is unique. And I most certainly would be delighted if I had another child like him. Perfect is a very strong word. And that’s exactly the word I am going to use. Our son is perfect. 

Driving across Europe- Lovran

After an incredible time in Italy, it was now time to move onto our next destination. This time it was not only driving to another city but another country. Beautiful Croatia. It took approximately 5 hours from Venice but we drove right through Slovenia which was wonderful.

Ideally, we would have loved to visit Dubrovnik as we know it the prominent tourist place to visit in tourist. However, it would have meant a large amount of driving onto our next destination Hungary. We decided the best thing to do is to write a list of the places in Croatia that did not detour to much away from our route. We came across Lovran which has relatively good reviews which is situated on the eastern coast of Istria Peninsula. Lovran and its near vicinity, makes a part of Opatija Riviera which is becoming an extremely popular place to visit in Croatia.  

We decided that our trip to Croatia was going to focus purely on relaxing on the beautiful local beaches instead of walking miles to visit every attraction possible. So that’s exactly what we did. We stayed in a Villa not far from the main beach in Lovran called Beach Kvarner. We didn’t spend too much browsing photographs of the beach because we just thought no matter what as long as we have sand and sea, that will be relaxing enough.

We somehow managed to skip the part that Beach Kvarner was in fact a concrete beach. However, you would be surprised at how many people were down the beach sunbathing on their towels as if it was a normal beach. Maybe an unpopular opinion: but is a beach really a beach without sand?

Anyway, we did try to blend in with the rest of the crazy people sunbathing- on a concrete beach but it just wasn’t for us. People that don’t like sand- this is the beach for you!

So we did what we do best and explored what else Lovran had to offer.

Firstly, we hopped on a Pedalo which was beautiful but actually quite terrifying with a toddler- never again! Although, we had a fantastic driver (our 3yo), I was very nervous he was going to just suddenly jump in the sea or something- we all know how predictable toddlers can be. So we stayed on the pedalo probably about 20 minutes and then pedalled back to shore.

Lovran’s old town city centre is beautiful. This is where you will find the Romanesque bell tower which is surrounded by walls from the Middle Ages and intersected with cobbled streets and a series of baroque houses.

The Romanesque Bell Tower:

Lovran has the wonderful Lungomare promenade, approximately 12 km long. It took us roughly about an hour to walk to Opatija from Kvarner beach in Lovran. And I would highly recommend this walk if you love beautiful views and of course enjoy walking.

Driving across Europe- Venice

I feel like a sponge with every bit of information I’ve taken in from the wonderful places we’ve visited over these few days already. This time we were heading on over to somewhere I have always dreamt of visiting- Venice, Italy.

Just WOW. I couldn’t believe how magical it was. Such a surreal place to visit, honestly looks like something you would see on a painting.

This is a city made up of 450 bridges and 120 islands so be prepared for plenty of walking because there’s no getting away from it. Expect to get lost at least 100 times because it is just a maze full of narrow and twisted streets. But, it is a place you are not going to want to miss!

For parents, I would recommend exploring Venice without a pushchair if you can. We spent a large amount of time lifting and yanking our pushchair up the millions of steps and bridges that make Venice so beautiful.

Our Top 5 Must See Places in Venice:

The Grand Canal is a two-mile ribbon of water plied by hundreds of water-traffic sweeping in an S shape through Venice. There are many points through Venice for people to hop on a gondola but there is an access point right at the Grand Canal that has an easily assessible ramp meaning that everyone can join the fun- we just took our pushchair on with us!

Rialto Bridge is the oldest bridge spanning the canal in Venice. The bridge consists primarily of steps, making it a challenge for tourists with pushchairs and wheelchairs.

Piazza San Marco (Saint Mark’s Square) is known as the tourist heart of Venice. This is where you can visit the Basilica San Marco (Cathedral) and the Campanile di San Marco (bell tower).

Basilica San Marco is a stunningly beautiful Cathedral with a unique and detailed design.

Campanile di San Marco is the bell tower of Saint Mark’s Basilica. The tower rises 323 feet above the Square containing five bells, topped by lion faces and Venice’s version of Lady Justice.

Driving across Europe- Pisa

Florence, was an incredible place with so many tourist attractions to see. But our next destination was Venice with a slight detour to Pisa beforehand. Pisa is only about an hour away from Florence so what a great opportunity it was to visit it while we were somewhere near.

It would be obvious to jump straight in and tell you about how amazing the Leaning Tower of Pisa was. But first you need to know there are many other impressive places to see in Piazzo dei Miracoli (the square of miracles) as well.

The Duomo Cathedral was the first building to be constructed in the Piazzo dei Miracoli. It is in fact one of the most ornate and impressive amongst all the other Cathedrals you will come across in Italy.

The Baptistery is the second building to be constructed in the Piazzo dei Miracoli and is the largest baptistery in Italy. The structure is almost 55 meters high, which is actually slightly higher than the leaning tower.

But of course, the fascinating Leaning Tower of Pisa. Just wow. With its impressive structure and uniqueness there’s no shock that people are so amazed! It’s ability to still be standing  after all this time is beyond me. The atmosphere around the spacious grounds of Pisa square is insane. You’ll see people jumping, back flipping, head standing, all sorts of crazy things just to get a good photograph with the tower – and of course we just had to join in!

Driving across Europe- Florence

Geneva, Switzerland was incredible. Beautiful scenery with beautiful people. But it was time to move to our next destination Florence,Italy. As soon as we had our breakfast – we were out of that hotel. The quicker the better. No time for tantrums, no time to think about more food and most importantly no time to break anything else. We were out of that hotel before they had chance to charge us for the wonky lamp, wobbly toilet and disconnected telephone, no thanks to our toddler.

Everything was going so well. I was enjoying listening to the same 10 Spotify songs play on repeat for 3 hours; my husband was concentrating on winding in and out of the crazy ass drivers in Italy; and our son was sound asleep, like butter wouldn’t melt. What could possibly go wrong?

Well we were 22 hours and approximately 1,853km away from our home in the North East, UK and the car engine warning light has come on. So what do we do? We did exactly what all normal panicked families would do in that situation. We blamed each other. “You’ve brought us on a road trip around Europe and you have a broken car?” “Did you not think about the risks?”  “Why did you even suggest coming on this flipping road trip in the first place, are you trying to get us killed?”.

We soon came to the realisation that we needed to think logically- and fast! Oh and by this point our toddler decided to have the 386,539th meltdown because he hadn’t eaten in about 10 minutes. Real life problems. But, luckily we located a Land Rover dealership in Milan, Italy not far from the city centre which was approximately 50 minutes away.

We didn’t have enough time to venture right into Milan but we found a cute little café for a quick coffee and toilet break which was all cute until I walked into the toilets.

I remember walking into the women’s toilets and just gazing at the floor for about 5 minutes. I thought I walked into the men’s by accident at first but no I was right the first time. I even debated telling the manager that I thought the toilets needed fixing. But no the toilet was working just as it should be.

I did what all travellers would’ve have done in that moment. I just went with it. Embracing the Italian culture, after all isn’t that what travelling is all about. Guys I present to you- The Squat Toilet.

We picked up our ‘temporary’ mended car – we still to this day will not understand exactly what they meant by ‘temporary’ but our main focus at that time was just getting to Florence. It took approximately 4 hours in total from Milan. Like everywhere, the drive was flowing nicely until we hit city centres.

But we were finally in Florence. A friendly and stunning place. Our hotel was located on the outskirts of Florence but it was only a bus ride or 35 minute walk away from the city centre. We had a beautiful time exploring Florence, it is definitely somewhere I would recommend.

Our Top 5 Must See Places in Florence:

The Cathedral of Santa Maria del Fiore is a 1200’s Medieval cathedral with an iconic red dome:

The Ponte Vecchio is a fascinating medieval stone bridge with jewellery and souvenir shops:

Palazzo Vecchio is a 13th century palace housing lavishly with decorated chambers and ornate courtyards:

Basilica of Santa Croce in Florence which is a Franciscan church known for its Giotto frescoes:

Piazza della Signoria, also referred to as the city heart, is an L-shaped square in front of the Palazzo Vecchio


Driving across Europe- Switzerland

26 days, 4,050 miles and 8 countries. All with our toddler in the back seats.

It’s not something we ever really thought about before, travelling in our own car I mean. But I must say it definitely was a cheaper way of seeing so many incredible places – all at once!

It took a lot less planning than we initially thought. We knew the places we wanted to go and the order that we wanted to visit them in but, apart from that we were real travellers just booking our next stay the night before. Risky but so much fun!

We started our family road trip from our home town Stockton-on-Tees and drove straight down to Folkstone where we were catching the Euro Tunnel to Calais, France the next day. We knew we would need a break after the 6 hour drive as we could not possibly handle another 12 and a half hours on top of that without any sleep. The Euro tunnel takes 1 hour and then it takes 11 hours 30 from Calais to Geneva, Switzerland. So we did, we stopped in Folkstone for the night in a standard Premier Inn. Decent price, clean and friendly! Just what we needed at the beginning of our road trip. 

We had some lovely grub at the beefeater not far from the hotel but apart from that we had an early night because we knew we had a long journey ahead of us the next day. Arriving at the Euro tunnel nice and early the next day was a good idea, it meant that we could grab a nice hot drink which by the way is a needs must before getting on that Euro tunnel. We were slightly delayed so we were sat in our cars a little longer than we should have been.

The Euro tunnel in total roughly took about 1 and a half hours but I was so thankful to finally get of the bloody thing, not good for any one that feels claustrophobic by the way! But we arrived safely in Calais ready for our spontaneous family adventure although not looking forward to 11 and a half hours worth of driving ahead.

We drove through the South of France which had so many beautiful villages and towns that I would love to go back to and visit properly someday! We stayed in Saint-Genis-Pouilly which was a nice enough place to stay. Not somewhere I would particularly recommend if you were staying for a few days as there is very little to do there. But luckily we were only there for the one night using it as a bit of a pit stop really. However, it meant that we got to drive through The Jura Mountains before heading onto Florence, Italy the following day. We even got the see the Mont Blanc- the highest mountain in the Alps.

I can’t go on without mentioning how insanely beautiful it all was. I couldn’t stop taking photographs. Every corner we drove round and every hill we went up, there was me snapping away.

Remembering that we did of course have a toddler with us, we did have to make what felt like 153,049 nappy changes a long the way. I cant remember exactly what we ate during this 12 hours but it was probably every mcdonalds and pizza shop we came across. Our son was very suprisingly well behaved for most of the journey considering it was for what felt like a never ending journey.

But then again, what children don’t love endless amounts of paw patrol and peppa pig. And lets be honest, my son is a mummy’s boy. And that can only mean one thing. He loves sleep. Like really really loves sleep. I didn’t think it was possible for someone to love sleep more than me. So lets be honest and not go on about how easy it was to distract him for 12 hours because luckily for us he found the best distractor of all… sleep.

Back to beautiful Switzerland, I could go on forever about how incredible it was. But, i’ll let you make your own judgements through the photographs we captured along the way.

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