Guest Post: Sonny’s More Than Ordinary Life

I am very grateful to Becci at To Aufinity and Beyond for sharing Sonny’s story with us. Please do pop along and check out  her beautiful blog and social  media pages.

When did you first realise that your child had SEND/ a medical condition?

For me there was a gradual build up of events that took place, beginning when Sonny was only very small. There was one incident during a seaside trip to Walton-on-the-Naze, when Sonny was three years old. It suddenly dawned on us that Sonny had a lot of difficulties. I wrote about this in one of our most read blog posts, Autism | The Moment I knew.

I didn’t know what his difficulties were exactly but I knew something wasn’t right and that I had to seek help for him. Life with him up to that point was extremely difficult. I had an elder child, who I felt was missing out and a young baby who needed my love and care too. We couldn’t do anything or go anywhere in fear of the next meltdown and I was at a real low point in my life. I felt like it was my fault and that it had to be something I was doing wrong.

Then one day, a friend tagged me in a link on Facebook about SPD. Initially I assumed it was about Symphysis Pubis Dysfunction, a condition I suffered horrendously during my two latter pregnancies. The link turned out to be about Sensory Processing Disorder. I had never heard of it before and it was honestly like reading a detailed description of Sonny and his behaviours. It all made perfect sense! A penny dropped for me that day and from there, I began researching SPD and ASD and made an appointment with our GP for referral to Paediatrics. When we had our initial assessment, it became clear that Sonny was highly likely to have Autism and Hypermobility.

What were your biggest worries in those early days?

In the early days, my main concern was what this meant for Sonny and as us as a family. All I could see and hear was the word Autism and it took me a little time to see past the label and realise this was a fundamental aspect of my little boy’s personality. A personality like no one else I met and one I adored so very much. I was worried as we were approaching nursery age and I was certain Sonny would never cope in a mainstream school setting. At three, he was barely speaking and it broke my heart to picture him lost in a class of 30 children where his environment was painfully overwhelming and where nobody understood him.

Does you child have a formal diagnosis?

We are currently on the NHS waiting list for his formal diagnosis appointment. The list is said to be around 1 year long and we were placed on the list in April 2016. We were advised during our initial assessment, that it would not be difficult for Sonny to receive the diagnosis and that we should have a formal Autism diagnosis by April 2017. We are very nearly there!

What kind of support did/ does your child receive?

We are incredibly lucky to have our children attend one of the top public schools in our area. Despite not yet having a formal diagnosis they have already put a huge amount of provision in place for him. To begin with Sonny uses PECS at school and many other visual aids. He is met at the main school entrance where he is greeted by his support teacher each morning because the playground overwhelms him. He spends the first 15 minutes of the school day in the learning support classroom which gives his class enough time to settle in before he joins them. He has his own black out tent which he can go to when he is feeling overwhelmed. He has a 1:1 support teacher who supports him the whole duration he is in school. He has his own personalised and currently reduced timetable. He is not expected to sit and learn in the same style as the other children in his class and they have adapted his learning style to suit his needs. He has unlimited access to snacks and drink while at school and in all fairness he gets pretty spoilt! (Waffles on a Monday and Pizza Friday!) He has his own area in the classroom with a small desk and chair so he can learn with his 1:1 away from distractions if he needs to. This little area has his own display board and little bookshelf with his toys on.

Sonny has daily speech and language support at school. He uses the buggy board to and from journeys as he tires very easily due to hypermobility. He has ear defenders and his own tent at home. He sees a Chiropractor every 3 to 4 weeks for maintenance, having gone through a course of twice weekly and weekly adjustments to his pelvis and spine. This has had such a positive impact on the way in which he walks and holds himself.

What accomplishment of your child’s are you most proud of?

I am so very proud of how far Sonny has come. There are so many ways in which he has made me proud it’s hard to choose. If I had to choose one, it would be proving me wrong, showing me he can thrive in a mainstream school. It is amazing how a child can flourish when all their needs are met with the right support. His speech has come on tremendously, is learning to read and amazes me each and every day. We have a long road ahead of us but Sonny gives me the hope and energy I lacked before.

What do you know now that you wish you had known in the early days?

We are still very much in our early days while awaiting diagnosis. I wish I had known more about Autism. I feel perhaps I would have been able to spot the signs a lot earlier than I did. I started blogging just 5 months ago. I want to raise awareness and understanding for those with Autism and make the world for them a kinder place to be.

What advice would you have for a parent whose child has just received a new diagnosis?

You are not alone. I felt very much alone back then, and kept myself to myself. Reach out if you haven’t already. There is such a wonderful community out there, waiting to welcome you with open arms. Some are further along in their journey, others simply at the start of theirs. Take each day as it comes and be kind to yourself. You are doing an amazing job and even though it may not always feel like it, you are your child’s advocate and there is no one out there that could do it better than you can.

Guest Post: Anthony’s More Than Ordinary Life

I am very grateful to Ann at Rainbows Are Too Beautiful for sharing her family’s journey with us. I’m sure you will love her post as much as I do. Please do pop along to her blog and social media pages and show some love.

When did you first realise that Anthony had Special Educational Needs?

I can’t remember the exact time when I realised Anthony had special educational needs as such but I remember the first moment when I thought he wasn’t progressing like other children. Although over the years most of the mums from our antenatal group have moved away from our area, in the early days we met up around the kids birthdays. A few months after their second birthday we met at a park and all the kids played about.

Many were still nervous and there was nothing physical that set Anthony apart. In fact it was only when a child tried to get something out of his buggy and pulled on his mum’s jacket that I noted a very obvious difference. The little boy had grabbed a hard back book and said, ‘Tory, mama’. He was asking for a ‘story’. He was then joined by some other kids who requested various things from their mothers. Anthony, didn’t speak a word. But that had nothing to do with being in the playground. He never said anything. Yes, he made noises, but nothing like dada or mama or anything that seemed to communicate at all.

It took another year before we were referred, by which time we’d done some research ourselves. My hubby and I had already had the ‘do you think he might be autistic?’ discussion.

What were your biggest worries in those early days?

By the time Anthony was diagnosed it was only nine months before he was due to start school. Making sure he had the right support for school was our first concern really. Anthony seemed like a happy child, so we mostly wanted to make sure he had access to opportunities like all children should.

Does Anthony have a formal diagnosis?

Yes, Anthony has an ASD diagnosis. He is now nine years old and in the years that have past he has also had a diagnosis of hypermobility, ADHD and anxiety. His younger brother was diagnosed with autism around three years old. He is six years old now and though not officially diagnosed, we and his school believe, he also has verbal dyspraxia which is part of the reason he finds talking difficult and still uses a lot of Makaton sign language to communicate.

What kind of support does Anthony receive?
Anthony has a 1:1 teaching assistant to support him in school. He sees a speech and language therapist and an occupational therapist on a termly basis. Anthony is also on medication to help him with his ADHD.

Which of Anthony’s achievements are you most proud of?

So many things, I can’t possibly list them all. Most of our proudest moments are when he has believed in himself to accomplish something. Despite coming last, I was so proud when he took part in his first disability swimming gala. He came first is in category this year. He’ll overcome many things to try something new like skiing for example, but mostly I’m proud because he tries his best, wants to be good and has pride in himself.

What do you know now that you wish you had known in the early days?

I understand more than in the early days, more about autism and more about Anthony. I wish I had considered he could have had ADHD earlier. It’s quite common and I think he struggled with this for a few years while it was effectively masked by his ASD diagnosis. I’m not sure how I would have felt had I known I would have another child with ASD too. David is, in comparison, more affected by his diagnosis. But I’ve always taken things as they come and the kids were no different.

What advice would you have for a parent whose child has just received a new diagnosis?

Your child is exactly the same child as they were before their diagnosis. You may simply know more or understand them better now. I found speaking to other parents of additional needs children wonderful. Being able to share the joys, challenges, heart aches and get information and insight with them was invaluable.

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Guest Post: Elin’s More Than Ordinary Life

Hi I’m Ruth. My daughter Elin is 8 years old. Huge thanks to Victoria at ‘Mummy Times Two’ for asking me to share my story. It’s not always an easy read but it is my story and we lived it, my husband, my baby daughter and me. We’re still living it, telling the tale and loving life and feeling grateful for every second of it.

So, this is the story of what happened when I gave birth and how it shaped our lives forever, before we even knew it.

I’m actually not going to focus on the birth. Not just because it was 8 years ago and I’m struggling to remember what colour pants I put on this morning, let alone remember all the gory details of my labor, but also it would make for a pretty traumatic read (and probably be even more traumatic to write). So I will sum up. In a nutshell, following years of grueling investigative procedures to decipher why I couldn’t conceive, we had a successful round of IVF and I enjoyed a completely healthy and hassle-free pregnancy. We thought it was a miracle, but it turned out the miracle was not, in the end, the safe delivery of our longed-for IVF baby.

The miracle was that she survived at all.

After 46 hours of labor, my little girl silently (oh, so silently) slid into our world, caught by the awaiting hands of the unsuspecting and rapidly ashen-faced midwives. Silent she remained and, as the on-call doctor summoned at once by the buzzing red lights would later tell us, roughly about two minutes from death. Nobody had any clue she had been in such horrendous distress, nobody had any reason to try and break her free from the little prison of my body during labor, which as we now know was slowly but surely killing her through oxygen deprivation. The joyful cry that we had waited nine months for (oh who am I kidding, I felt like I’d be waiting a lifetime) never came and we watched as a million medical staff ‘worked on’ my first-born, newborn, helpless baby girl right in front of us, still not aware (how could we be?) of the gravitas of the situation, that right now we were living something that would dramatically alter the course of our world together as we knew it.

Elin spent 4 weeks in the NICU, having been whisked away from us almost immediately and ventilated in Intensive Care.

I’ll tell you a secret about these first few minutes after her birth. I didn’t look at her. My husband begged me to look at her beautiful face but I saw a flash of her paper white torso and I couldn’t look. I remember my warped, Pethidine addled train of thought like it was yesterday. I thought I will not look- if I look, I will love her and I thought she was going to die. My head could not grasp what my heart had known from the moment I peed on the stick. It was too late, I loved her already. Purely, unconditionally and forever. I will regret that moment for the rest of my days.

The first chance I had, I let her down. I let fear hold me back. I would not let it happen again.

What to say about the time Elin was in the NICU? We could not hold her for 10 days. I need not explain the torture of this. I was a Mummy, with no baby. There was nothing normal about the experience at all. Just life, clinging by a thread. We lived in the hospital, sleeping on hospital beds in rooms on SCBU reserved for parents in our ‘difficult’ position. The smell of that squeezy hospital soap we had to coat our hands in before we touched her skin still knocks me sick to this day. I expressed my milk in a lonely room so the nurses could drip feed it down a tube in her nose whilst she fought for her life (to think of the hours I wasted whilst pregnant thinking about and discussing ‘breast vs bottle’ ).We sat by her bed for 14 hours a day and tossed and turned in our hospital beds in the clammy August heat for the rest of the time. My Mum brought her a ‘going-home’ outfit and I hated how beautiful it was, how it represented something so far from my grasp at that time it was hard to imagine. I hung it on the alien furniture in our clinical room and it haunted me for days as I wondered on more than one occasion if we might have to bury her in it instead.

I coped by writing letters to Elin in those hours that turned into days, then weeks at her bedside.

I reasoned, my fighting spirit finally returning, she could read them when she turned 18 (she was getting out of here, I was determined). So she would know how much we loved her, how much she meant, how we prayed and begged and pleaded (with no-one in particular) every second of the day for her life. I did not realise of course that Elin would never be able to read them. It was before the words ‘brain damage’ had been uttered, considered even (at least by us anyway). I still have those letters and I have never been able to even pick them up, let alone read them. I hope one day I will, but for now they sit in her ‘baby box’ along with her hospital bracelet and her first baby grow and everything else I still cannot look at, eight years on.

My husband coped by finally going back to our empty home and putting all the baby things away, moses basket- the works, in a fit of pessimism. Then he drove back to the hospital and before he had even parked up turned around, went back home and put them all back out again.

It seems he wasn’t ready to give up either.

On the 19th August 2008 we took Elin home. Due to the lack of oxygen she had suffered at birth, we did not bring home balloons, presents or cards but instead a list of diagnosis’. She had incurred severe brain damage (Quadriplegic Cerebral Palsy) and a result of this, vision impairment and epilepsy. Elin is profoundly disabled and fed through a tube (a gastrostomy). She is unable to speak, or move independently.

Her condition is described as ‘life limiting’. That’s what Elin’s condition is. But it’s not who Elin is.

You see, nowhere in that list of issues we brought home with us does it tell you about her smile (that took 10 slow months to form). An amazing smile that (cliché alert) lights up a room. It does not give you an impression of the sound of her laugh when you ‘beep’ her nose, how she draws people into her world, how she loves to be cuddled, how she hates to be alone and does not like the dark. You would have no idea based on that gloomy list, or the list of the 13 medications she takes a day, that she is learning. That she is able to now use a big ‘switch button’ with her good arm to turn favourite toys on and off, that she turns her head towards sound and light and can clearly recognise (and show visible excitement when she sees) her Mummy and Daddy and other close family members. That she can knock down a tower of bricks and struggle until she has made her arm bash the last block from the bed onto the floor (at which point she laughs uncontrollably). That she has favourite songs and activities at school and is even starting to make choices about what she wants to do through clearly vocalizing to indicate preference.

Who knows where these basic forms of communication could lead her in the future.

It’s a terrible thing to have to admit the day your first child was born was the worst day of your life. It was. But it was also the best of course. Because it brought Elin to us, our little miracle girl. The pure unadulterated joy she brings us every single day is indescribable. The way our priorities have shifted, the wonder we see in the simple everyday things in life, the way we are grateful for every single moment with her. In that first breath that Elin never took it was like we were born again into a world that we never knew existed.

But it’s our world now and it’s Elin’s and we are happy living here in this strange, unexpected way. Because we are together. What else is there?

Despite some of the horrendous times over the last few years which I wouldn’t wish on my worst enemy, Elin is still with us. It could have been so very different. When you have faced loosing your only child before you have even known them, and come through it, then you can cope with almost anything. We learned to stop grieving for the ‘ordinary’ and to embrace the ‘extra-ordinary’. When life gives you lemons, there’s only really one thing you can do in the end. You have to just try as best you can to make lemonade.

Thank you for reading my story. Anyone interested in learning more about our extra-ordinary life can visit my blog: www.mummakinglemonade.blogspot.com or find me on Instagram at mum_making_lemonade.

We must let go of the life we had planned so as to live the life that is waiting for us” Joseph Campbell.

Our More Than Ordinary Life – Do You Have A Story To Share?

Do You Have A Story To Share? If so I would love to hear it!

I started blogging at Mummy Times Two after many nights of frantic googling. My second baby had lots of difficulties when he was born, and I was desperate for answers. Amidst a plethora of scary articles I came across a blog which gave me hope.

I had no idea at that point whether Number Two would get a diagnosis, and in many ways he remains a mystery (albeit a wonderful one). But I did know that I wanted to share our story, and provide a little corner of hope online. I’ve navigated the SEND world for a long time, firstly as a teacher and then secondly with Number One’s Autism diagnosis, but my second baby was the catalyst that made me want to talk more openly about our experiences.

Mummy Times Two was born out of that desire.

It is not a blog which shies away from the truth, or looks at the world through rose tinted glasses. But it is a blog which celebrates the reality of life with our children, their accomplishments and the strength of parents.

I would love to include the stories of more families, and if you have a blog to signpost families to it, and that is where the ‘Our More Than Ordinary Life’ series comes in. Starting in April, the series will run on a weekly basis every Friday. Each week it will feature a different family, who have navigated through difference – whether that be a physical disability, a learning difficulty, a social and emotional difficulty or a medical condition.

Whether the effect on your family is short term or long term, a new diagnosis (or the fear of one) can be a scary prospect.

I want those mummies sat late at night googling for answers to come across a ray of hope, to see that life goes on, and that although our lives may not be exactly ordinary that doesn’t mean they are worse.

If you have a story to tell, I would love you to be part of our new series. You don’t have to be a blogger to take part, and if you would like help to tell your story I am happy to give you assistance. You can make your identity public, or tell your story under a pseudonym.

It is you, my readers who encourage me every time you like or comment on my posts.

So this is me, encouraging you to share your stories, and to pay forward a little hope. If you would like to know more or are interested in taking part, please do get in touch, I’d love to hear from you.