Everybody at some point in their lives have dealt with stress and worry. I think from the moment you find out your pregnant the worry starts, it certainly did for me, with Ryan it was the worry of becoming a mum for the first time, is my baby developing ok, would I be a good mum, would I know what to do, the list goes on. When I was pregnant with Noah the main worry for me was would this baby have down syndrome as well. Before I fell pregnant with Noah Kristian & I saw a genetic counsellor to see what the probability of having another baby with down syndrome was. Although the possibility of this happening was very low it was still a worry for me. I had more scans than usual and different blood tests which showed the low risk but for the whole pregnancy I still had at the back of my mind what if it happens again. It wasn’t until I saw Noah for the first time that I believed everything was ok.

I knew if we did have another baby with down syndrome we would cope and we would be more prepared but I desperately wanted to experience having a baby with no additional problems and the more normal path of motherhood the majority of my friends had followed. With Ryan being our first child I felt like I missed out on a normal motherhood experience that it seemed everyone was following.

Having children can put a strain on any relationship but it feels like raising a child with special needs can sometimes make or break you. When Ryan was younger I naively thought as he got older things would get easier and stresses and worries wouldn’t be as bad but it definitely hasn’t turned out that way. Ryan’s needs have changed rapidly as he has got older but the past couple of years have probably been the toughest we have faced so far. The worries and stresses have sometimes been unbearable to the point where it has made a significant impact on Ryan’s life, our lives and also Noah’s. Noah is now at the age where he knows and understands more about Ryan and how Ryan’s needs are different to his. Noah is very protective of Ryan (as is Ryan of Noah) but I don’t want Noah growing up thinking it is his responsibility to look after Ryan, I want them to grow up to be great brothers and friends spending quality happy times with each other.

The stress and worry you go through can have an impact on your mental health, sometimes you get to the point where you feel you just haven’t got anything left in you to give. We are Ryan’s voice, we have to make the decisions for him to the best of our ability, we have to stick up for him and fight for his rights and what he deserves and quite often over the past couple of years I have felt like I have no fight left in me but I can’t give up, Ryan depends on us and Noah does too. On the days where it feels like the whole world is against you and nothing is going right you still have to put one foot in front of the other and keep going because nobody is going to stick up and fight for Ryan like we do.

I do worry about the mental health of both my boys. I worry that Noah takes on some of our worries and stresses when he sees how frustrating and upsetting things with Ryan can be and I worry how Ryan internalises things, what does he think and feel when he is in different situations, it must be very frustrating when he can’t express to us how he feels and we can’t talk to him about his feelings.

I wonder what help is out there for families with special needs children and their siblings when it comes to mental health and wellbeing. Is there a place you can go as a family and get support of different levels. A place where may be there is a therapist to offer support, relaxation treatments, where siblings can go and talk freely about their experiences, a place where you can truly be yourself.

I love Ryan and Noah with all my heart, they are my world and I would do anything for them. I am never going to be able to change the way Ryan is and in some ways I wouldn’t want to but I know one thing for sure I will try my absolute best to never let him down and I will continue to fight for the future and the life that he deserves.

I’m going to be honest before I had Ryan I knew nothing about down syndrome. The thought never entered my head when we started thinking about having children. I can still remember when I was about 20 weeks pregnant with Ryan and getting the letter with the results of the blood test for down syndrome and reading it thinking ok that’s fine I’m low risk for having a baby with down syndrome. I never imagined that I was carrying a beautiful baby with that extra chromosome and after all I was only 30 not even high risk. When we found out the diagnosis at birth we were completely floored, the doctor and midwife came into the room, the doctor looked at Ryan said ‘we will do the blood test for trisomy 21 but I can just tell from looking at him he has down syndrome’. At that precise moment in time we didn’t know what to say or what to think and I remember everyone standing there looking at us waiting for a reaction when all we really wanted to do was be left alone. I did end up being totally alone that night once Kristian had gone home Ryan started choking and the midwife and doctor whisked him away putting suction tubes down his throat to clear his airway and then he was taken to the special care baby unit to be monitored and had treatment for jaundice, my first night with my new born baby and I couldn’t even be with him.

Every bit of information we received from the hospital seemed to be on the negative side, down syndrome children had higher risks of being born with holes in their heart, they are more susceptible to getting leukaemia, problems with eyesight and hearing, it just seemed to go on and on with negativity and nothing to give you a little bit of hope for the future. Ryan was lucky his very small hole in the heart has virtually closed up over the years.

What the literature doesn’t tell you is how amazing and truly remarkable our children can be. They work so hard to do things that the majority of us take for granted. Ryan didn’t say ‘mummy’ until he was 6 years old and it was so emotional hearing him say that for the first time, he had worked hard on his speech and gradually it was getting better. Every little thing you start to appreciate more as Ryan has worked hard to get there and you begin to build up valuable life skills that will hopefully help him to be a bit more independent in life.

As Ryan got older it became more obvious to us that in his behaviours he had autistic traits. It is common for down syndrome children to portray these kind of traits but as Ryan got older this seemed to show more and more. It started off as little things, having to have his toast a certain way round on his plate, having to have his drink in a certain place on the table but gradually these behaviours became more and more obvious to the point at bedtime we have to do the same routine every night – go upstairs in a certain order, make sure Noah is in bed first and then both of us have to put Ryan to bed, I have to cuddle and kiss him first and then his dad has to cuddle and kiss him (it doesn’t seem like a major thing but we have to do this every night otherwise Ryan will not even come upstairs to bed and it does feel a bit like groundhog day sometimes!) he rocks a lot of the time, grinds his teeth, watches the same thing on his ipad usually listening to a certain sentence again and again and again, he has to sit in the same chair at home and at grandparents and he will only eat certain foods. Earlier this year Ryan was diagnosed with autism and social anxiety, I was convinced for the past couple of years that Ryan was autistic but it took a long time and a lot of observations with behavioural nurses, psychiatrist and endless tests before finally they agreed Ryan was autistic. At the point in time his anxiety was also diagnosed, he has struggled a lot this year with anxiety and become more and more anxious of being in loud busy places, it does make it hard when we go and about because we want to do things together as a family but sometimes we have to accept the fact that Ryan won’t cope with what we are doing and we have to change our plans or leave Ryan with grandparents.

It is difficult at times as Ryan can’t communicate what he is feeling and sometimes you are second guessing how he feels or what his behaviour will be like. This can be difficult for Noah also as a lot of the time the focus is on Ryan and the struggles we face with him and it does feel like we don’t give Noah the attention he deserves or needs. That is why it is nice every once in a while I take Noah out to the cinema, he loves films!, and I get to spend some quality one on one time with him, which I love.

All we wish for is that Ryan is happy and healthy in life, that when he is older he can live as independently as possible and have a life of his own, we couldn’t wish for anymore than that. Down syndrome isn’t an illness or something to be scared off, yes life can be hard and you face hurdles you never thought were possible but with that extra chromosome comes a whole lot of extra love, hugs and laughter and who could ask for more than that.

xxx

Raising a child with special needs has brought a lot of emotions, guilt being one of the main ones. When Ryan was a baby there would be times when I would feel guilty over everything, have I spent enough time doing therapy exercises with him, is there more I could be doing to help him along, why is Ryan different to others – was it my fault. I’m not sure whether the guilt actually goes away or whether you handle it in different ways as they get older. It was especially hard when Noah came along trying to manage our time so both boys got the attention they needed and deserved and sometimes the guilt of feeling like you hadn’t done enough or you weren’t good enough could be very overwhelming.

One of the big issues for us was when we first started looking into respite for Ryan. This felt like a huge decision at the time and we wanted to make sure we made the right choice for Ryan. There was a number of reasons we looked into respite, Ryan didn’t make friendships like Noah did and as they grew up Ryan hasn’t had the opportunity to have sleepovers with friends or play dates and it could be a bit of independence away from mum and dad and it gave us the opportunity to focus all our attention on Noah. Respite started off gradually with Ryan going for an afternoon and staying for tea and then gradually built up with a one night stay and eventually built up to three night stays. Ryan settled into respite well and we knew this was his little bit of independence and it would help him become more independent when he was older, which was great, but I certainly struggled more than hubby did with worrying how he was when he was there, guilt that other people were taking care of him and he wasn’t with us and still now to some degree the guilt still creeps in. I’m not sure whether this is mum thing or not, do us mums feel things differently than dads or do we all just handle things differently? The time that Ryan is in respite we put a lot of focus on Noah, sometimes we maybe go overboard a little bit. It’s the small things though that count, if the four of us go out for tea or a coffee shop Ryan always picks where we sit as he will only sit in certain places and he dictates who has to sit where otherwise he gets very agitated and annoyed and yes we do let him do this because sometimes you have to pick your battles and this just isn’t one of them. When Ryan is in respite we always take Noah out somewhere and he gets to pick where we go, where to sit and what we do, he gets to make the choices instead of Ryan for a change. We have ventured to London a couple of times when Ryan has been in respite. This was especially strange for me, it felt wrong that Ryan wasn’t with us and we weren’t enjoying things together as a family of four but going to London isn’t something I think we will ever do with Ryan as it would be too much for him to cope with. Noah loved going to London and doing things just the three of us and Ryan enjoyed respite when we were there but it still felt like a little bit of our puzzle was missing.

Ryan really enjoys respite and the people who look after him are amazing and hopefully he will learn some really valuable life skills to be able to live independently from us when he is older. I don’t think you realise how much respite is needed until you actually have it, although the guilt is still there (sometimes it feels like it will never go away) it feels like once Ryan has gone to respite I can finally breath again, like I have been holding my breath battling on with day to day life with Ryan, helping him get ready everyday, changing him, every little thing he needs help with. When he is in respite and somebody else has the responsibility of everyday life with Ryan for a few days I can just sit and breathe……..

xxx

Our lives as a family of four is chaotic to say the least! I wanted to start writing a blog about our lives with our two boys and how hard and challenging it can but also how very rewarding life can be with a special needs child and a (I hate this word!) normal child. If writing about our experiences helps one other family then it is worthwhile.

Our world turned upside down on the birth of our first boy Ryan who is now 11. Unbeknown to us Ryan was born with down syndrome, something that we weren’t expecting and were not at all prepared for! It was a struggle at first to get our heads around this let alone having a newborn baby to care for. You look forward to taking your newborn baby home to start a new chapter of life but we never dreamt we would have to take our baby boy home via another hospital so he could have his heart scanned, it took out the excitement and joy of taking Ryan home for the first time. Luckily Ryan only had a small hole in his heart, which throughout the years has virtually healed up. Slowly and surely we settled into our family of three and the many hospital appointments and therapy appointments we needed to attend. Ryan had many ups and downs in the first few years of his life, he was admitted to hospital several times with pneumonia needing oxygen and antibiotics, I will never forget the dreaded phone call I received at work when Ryan was about 5 years old, I can still remember the teacher ringing me and saying all of a sudden Ryan is struggling to breath and we have called an ambulance, the worst possible images were going round my head until I saw him being carried out of the ambulance into hospital, another bout of pneumonia that totally floored him. Still now he struggles with chest infections. Nevertheless the years passed by with the three of us and it mainly consisted of appointments for Ryan and therapy that he required. Ryan reached his milestones a lot later than the majority of our friends babies. It was hard to see how different Ryan was and how behind he was compared to a ‘normal’ child but along with that it was also very rewarding and emotional when he did those things. Ryan only learnt to walk the month before his little brother was born, we were so proud of our boy who had worked so hard to get there and finally he took those first few wobbly steps . Just after Ryan turned 3 his little brother Noah was born. We had our hands full with two young boys but gradually we adjusted to being a family of four with a newborn baby and a toddler with special needs, at times things were very hard as Ryan needed a lot of attention and sometimes it was just purely exhausting. Ryan and Noah are totally different characters, Ryan being our quiet little boy and Noah being our little ball of energy, which he still is.

Being a mum for a second time to Noah did at times feel like I was a first time mum again. I wasn’t used to how quick he hit his milestones and he was progressing at the same time as everyone else and it just felt like finally we fitted in with everybody else. Sometimes though it did feel totally alien to me as well.

As the boys have grown up, Ryan now 11 and Noah 8, we have hit several hurdles along the way. As brothers they are following totally different paths in life, not how we thought life with kids would be. Before Ryan was born we just assumed everything would be fine and we would have a healthy baby boy who would hit his milestones at the same time as everyone else and who would go to a mainstream school like the majority of other children. It did feel very isolating at times as friends who had babies the same age as Ryan were progressing on and sometimes it felt like we were being left behind and people didn’t know what to say to us or how to be around Ryan. It felt especially difficult when we made the decision to send Ryan to a special needs school. We looked at mainstream schools as well beforehand but made the decision to send Ryan to a special school as this was the best place for him to be able to learn valuable life skills that some of us just take for granted, and to gradually learn how he can be as independent as possible now and in later life. It was hard making the decision to send Ryan to a special school, Ryan started travelling to and from school via school transport in a taxi. This was great for Ryan and that little bit of independence for him but it meant we didn’t have the normal experience of meeting other mums and dads in the school yard and Ryan building up friendships with other children. Gradually through activities and events at school we met other families in the same situation as us and to this day we have made some very good friends. Ryan didn’t have a lot of the experiences other children would have at the same age such as going to peers birthday parties and having play dates outside of school. He has been to a few parties but nothing like it can be in a mainstream school where sometimes there seemed to be a stream of party invites! When Noah started nursery and first school again it felt like a normal life meeting new parents and Noah making friendships, at times like that it really hits how different life with Ryan can be.

Well I have waffled on enough for now! In my next few blogs I am going to be talking about a variety of things including respite, down syndrome and autism, holidays and family life in general, hope you enjoy reading about it!

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.

ourupsidedownlife.com

Welcome to my new blog ourupsidedownlife.com

This is the first blog I have done so be patient while I negotiate my way through it! I hope you enjoy reading about our experiences as a family 🙂