When it happens to you…

We all, in one way or another, feel a need to connect with others. The popularity of reality TV, soap operas, social media, autobiographies and personal stories show how we can be touched and interested in others. Even the nosy neighbour in your street is looking for a way to be connected with someone else. Millions connect with football teams, attend clubs and groups of many sorts, join organisations and long to be part of something. It seems it is human nature to not wish to be isolated. Being part of something else makes us feel less alone, gives us security and allows us to feel loved and supported. Everyone one of us needs that.

We are drawn to other people’s stories because so often in some way we can connect with them. Many of you reading this will have children with special needs, or be a parent, or know me personally, have a similar faith to me, have twins, or identify in some way with part of my story. The longer I blog, the more experiences I live through and the more my children grow, the more people will be able to connect. I appreciate every one of my followers, family and friends so much.

It is the same for me too. When I was struggling with infertility I received comfort from reading other people’s stories from people who had went through similar. When my children were diagnosed with autism I searched the internet for support groups and information and joined online and local support groups with similar families. When my son was diagnosed with neurofibromatosis type 1 I did the same again. We are drawn to like minded people. It takes away the unknown. When someone else has walked that path before you there is so much reasurrance to be had from hearing those four words “It will be ok”.

But in amongst that common ground is still the reality that every one of us is different. There is a part of everyone’s story that is unique because we are all individuals. So here is a recap on our story so far and a brief update on the latest goings on:

My name is Miriam. I have been married for almost 16 years now. I have always wanted children so we started trying for a family right away. Nothing seemed to happen. So we just kept on working, living, and believing it would happen in God’s timing. Finally after 7 years of nothing I went to the doctor. I was diagnosed first with polycystic ovaries and referred to hospital to be put on a very long waiting list for IVF. Further tests at hospital changed the diagnosis from polycystic ovarian syndrome to a rare condition called late onset congenital adrenal hyperplasia. More hospial referrals and life long steroid medication followed but still no further forward in our quest for a family. As IVF was now no longer a definate we applied to adopt. We went through so many assessments and checks and finally we were assessed as suitable candidates for matching with a sibling group. We had a big enough house, we worked, I had a degree in teaching and everything was finally looking like we were heading in the right direction after 9 years.

Then came a letter in the post that we had finally came to the top of the IVF waiting list! We had been told we had been taken off the list for medical reasons but now we had a very real dilemma. Doctors gave us less than 1% chance of success with IVF due to the medcial complications I had and our long history of infertility. But during those years our faith was growing. And we knew this was something we had to at least try.

So finally in January 2008 I started a form of IVF called ICSI. A huge amount of hospital visits, scans, blood tests, more blood tests, and injections I had to give mysellf daily at home. We were facing the unknown and had to keep out faith. On Mother’s day 2008 I injected myself with my final lot of fertility drugs. I had a reaction to the anaesthetic used to put me to sleep for the operation to remove my eggs so I was kept in hospital overnight. I returned again a few days later to have 2 embryos implanted from the 15 eggs I had removed. 10 days later I was admitted to hospital again as an emergency due to hyper stimulation syndrome and I remained in hospital quite ill for a week. It was during that stay that blood tests revealed I was indeed finally pregnant.

After I was home the pregnancy went well. I suffered from the usual sickness but the excitement of being pregnant made this more than bearable. At 7 weeks pregnant we had an early scan which revealed two healthy babies! In November 2008 my twins Isaac and Naomi were born healthy. Due to my medical history I had a c-section but within 3 days I was home.

The first year of having the twins was a whirlwind of feeding, changing, sleepless nights, crying, visits from the health visitor and lots of weighing of babies. I was breast feeding but Naomi wasn’t putting on weight while her brother was eating like milk was going out of fashion (5 years later not much has changed there!). The children were late to meet thier milestones and Naomi was very small but no-one seemed too concerned. It was noted Isaac had an eye squint and he wasn’t playing much But I was willing to be comforted by the words everyone seemed to say, ‘It will come, don’t worry.’

But by 18 months I was worried: Naomi wasn’t crawling, or pulling herself to stand and Isaac was crawing into doors and walls like he could not see them and showed no progress towards walking at all. This was my first rung onto the ladder of special needs parenting and it was so scary and unknown. How do you find support groups when you have no idea what is wrong? What do you type into google when you are not even sure if it is just your imagination?

At 22 months old the twins saw the community paediatrician for the first time. We now know this lady on first named terms! That day I heard the word “autism” for the very first time. I will never, ever forget that day. My world was turned upside down over night. This started the barage of home visits from professionals, the self doubt as a parent and feelings of guilt that you have done something wrong, the vulnerability of having all you do with your child open to criticism from every professionals you ever meet. That feeling of desperation.
It took almost 2 years later before Isaac was finally diagnosed formally with classic autism, global developmental delay, severe learning difficulties and pica. Finally I had plenty to google! He attended specialist nursery provision and is now in a school for children with severe and complex needs. He then started having seizures. He had several EEG’s and in December 2012 we were told he has neurofibromatosis type 1, a tumour condition that means he has brain tumours. A few months later we found out he is visually impaired too and only has the sight in one eye.

Isaac started walking at age 3. Naomi required a standing frame to help her and finally she took her first steps at 2 and a half. I never knew if it was my imagination at first, but I started to see more and more signs of autism in Naomi too. In October 2013 she was assessed and diagnosed as also having autism spectrum disorder.

One of the many people we have seem in our journey of special needs has been genetics. When asked if there were any other conditions or diseases in my family I mentioned over a year ago that there was a rare syndrome within my family. The gene for this has now been discovered (isn’t it so amazing how research can do amazing things like that) and I was recently tested. I have just recently been conformed as having Aarskog syndrome and both children have a 50% chance of having this too. So one again we face more blood tests and yet more waiting.

But in all this we still believe. My faith was, and still is, an integral part of who I am. A few months ago I made my story into a film. Sometimes it helps to see it in words and pictures and song.

What do I want people to feel when they watch this or read my story? I pray you hear a message of “Keep believing. Keep on going. And keep the faith.”
It is so much more real when it happens to you.
Thank you for following me. This is a live journey of the good, the challenging, the real life of living with special needs children and faith. It is so good to have others journeying with me…

 

I refuse to give up hope

I’m hoping my son will sleep all night tonight. I am hoping he will let me dress him tomorrow morning without a full blown tantrum. I am hoping he might want to watch something other than Peppa Pig again. I am hoping I don’t get yet another call from his nursery.

Although these are all unlikely tomorrow I can still live in hope. When he seems developmentally ‘stuck’ I still hope. I live in hope that one day he will learn to talk. I have to have hope. Hope for today, hope for the future. I can’t and won’t give up on him, or his sister or life.

I remember hoping that one day I would have children. When I was asked at aged 8 what I wanted to do when I grew up I said “have a husband and children”. At such a young age I never doubted for a second it would happen. The husband came when I was 21 but the having children part was a long hard struggle. Every month I remember hoping that this was the month..but it wasn’t. Every time I bought a pregnancy test I remember thinking that this was the time. Every time a friend or a relative announced a pregnancy or gave birth I hoped I would be next. I lived in hope for so long that hoping became harder and harder. Have you ever been in that place? Hoping that things will change for the better but not seeing anything different? It is a very hard place to be in. It can be a very vulnerable place to be in too. I was so hopeful about having children that I was willing to try anything to make the dream come true. It became an obsession at times. I read books, I dreamt about it, and I thought about it day in day out. And many years later I am back in that place of hope again. The circumstances are different but the desperately clinging to hope is the same.

I have visited that hope on so many times that it has become a familiar friend now. I have become so attached to hope on my journey that I now realise I can’t go anywhere without it. I refuse to give up hope.

You see not that long ago I never thought my children would ever learnt to walk. Naomi required input from physiotherapists, occupational therapists, and a paediatrician and after a month of using a standing frame she finally took her first steps aged 2 years and 8 months. It was another four months later before her twin brother took his first steps. I am now hoping Naomi will one day learn to jump, balance on one leg and climb. I am hoping Isaac will learn to kick a ball, catch a ball and hop and jump. I hope one day they will both be able to join in physical games with other children their age. I hope they will be included.

Naomi has selective mutism. She talks great at home but seizes up in unfamiliar and stressful environments. I hope, with help, she will one day overcome her anxieties and let others hear her beautiful voice. She has so much to offer and so much to say that the world needs to hear. I have so many hopes for her brother. I really hope he learns to talk in a way that he can be understood. I hope he learns to communicate his desires to others to lesson his frustrations. I hope one day he masters toilet training. I hope he will learn self help skills and be able to live with some level of independence. I want to hope for so much more. I so want to hope that one day he might fall in love, drive a car, get a great job, get a degree. But right now my hope only stretches so far. In time my hope will grow. As he achieves more and more (and he will) my hope for his future will increase. What gave me hope when I wanted to have a family so much was medical treatments. I am so thankful for IVF. So thankful for trained doctors and nurses who carried out the treatment and midwives who successfully delivered my twins . Now I am thankful for specialist nurseries and schools, teachers willing to specialise in special needs children, physiotherapists, speech and language therapists, occupational therapists, paediatricians, and other parents walking the same road as me who all give me hope. Hope that one day things will change for the better. Hope that one day our lives will no longer be controlled by autism, neurofibromatosis and learning difficulties. Hope that we can overcome difficulties and trials as a family and face a future that holds wonderful things for us all. I refuse to give up that hope.

The journey thus far…

So this is my first blog.

I’m a 30-something wife, mother and Christian from Scotland. All sounds pretty straight forward but it is anything but.

This year I will have been married 15 years. When I married I expected children would follow soon after. They didn’t. My husband and myself read books, went to doctors, prayed, believed and bought more pregnancy tests than my local pharmacy sells in an average month…but it didn’t happen. Tests revealed numerous problems and finally we were placed on a waiting list for IVF treatment. I had no idea at the time just how many ‘waiting lists’ my family would be on in the years to come. God was clearly preparing me for a longer journey than I ever thought possible. I learnt so much during that 10 year infertility journey but at the time it seemed like never-ending. Deep down I must have had faith as I started to knit and made some faith boxes full of little things for my babies- to-be. My greatest desire was for twins. Sometimes you just don’t realise the implications of what you ask God for.

I could write so much about that infertility journey but finally in 2008 that journey ended with the arrival of healthy twins Isaac and Naomi. Despite doctors saying it was impossible to have children and that even with IVF we had a less than 1% chance of it working, our treatment worked 1st time and I had a wonderful pregnancy (discounting sickness) and had a planned c-section at 37 weeks and 5 days. My life seemed complete. I was truly convinced I had reached the ‘destination’. I was doing what I always thought I was born to do.

I then entered a new world of sleep deprivation, nappy changes, endless feeds and baby vomit. I loved it! Trained in child education, I had dreams of these little babies reading before they were starting school, thriving in the education environment and achieving great things. All parents dream. It’s what parents do and part of the inspiring, cheer-leading, ego boosting role we are given when God blesses us with children.You expect cut knees, the odd bruise and even a number of falls. You expect them to say funny things you will tell them all about when they are older. You expect them to have friends, join clubs, go to the local school. You don’t expect classic autism, still in nappies at aged 4, global developmental delay, sensory impairment disorder, non verbal, neurofibromatosis type 1 and seizures. And that’s just one of the twins!

This blog is going to let you join in my journey in raising my two beautiful miracle children who both have special needs. It’s a journey of faith, laughter, tears and fun, and one which may just make us all look a little different at the journey we are on too.

The children are 4 now and recently our journey has intensified and became even more ‘adventurous’. Isaac was identified as having global developmental delay before he was even 2 years old. He never took his first steps until around his 3rd birthday. He still can’t speak at all. He is still in nappies. He won’t wear shoes or socks and eats more than I do. His sleeping is very erratic. He still drinks milk from a baby bottle and all his play is on a sensory level. Most toys are eaten, mouthed or licked. He loves his sensory area at home though and does a wonderful flapping, marching dance if shown a bag of lollipops. He is a fan of Peppa Pig. He was diagnosed as classic (severe) autism in July last year. He has eye problems which we thought were due to having a squint. However, he was diagnosed in December as having neurofibromatosis type 1. No, I had never heard of it either! In layman’s terns he has tumours on his nerves and these are affecting his skin, eyes and brain. He has brain tumours. Terrifying to write; challenging to live with. His tumours are not cancerous but they can not be removed. They need monitored regularly and we need to know if they are causing him any pain. Our biggest challenge is that he can not communicate that to us. He has no language and can not even point. If I even needed God to help me in raising my son it is now! His Neurofibromatosis is a genetic condition and in two weeks time our whole family will be undergoing genetic testing which may lead to further developments in our journey.

I’ve been holding on for a long time to the fact that his beautiful, loving and caring sister was doing so well. As long as I avoided other children her age I could reassure myself she was doing wonderfully. She can talk beautifully. She will sit and tell you stories from books for hours. She has memorized entire episodes of Peppa Pig. She is an ok eater and she walked at 2 and a half (after needing a walking frame for a few months to strengthen her legs). She plays with a large variety of toys and acts out wonderful stories. But she is terrified of other children, diagnosed selective mute last summer and has never bounced on a bouncy castle (too loud she says), can’t climb, is still in pull ups and has no friends. She craves the same routines we need to create for her brother. She is on one of those infamous things they call ‘waiting lists’ to get assessed for autism too. Until last week I still believed she would attend mainstream school (although I did want her deferred for a year). Last week her name was put forward to be considered for additional support needs education. She’s her brother’s hero, carer, defender and best friend. She sings ‘Donald where’s your trousers’ whenever her brother strips off his clothes. She makes me laugh daily. She has the sweetest, kindest nature and always says please and thank you.

So this is our journey so far. A journey of hope, faith, special needs and special prayers. A journey I am willing to make public in the hope that I can raise awareness of autism, share some thoughts on life and maybe encourage you along the way. I am a faith-mummy. I needed faith to have my children and I need that faith daily in raising them. Every day is an adventure and I hope you will come on the journey with me…