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Showing posts from 2016

Reflecting on the past Year

As 2016 comes to an end, I've been reflecting on the past year. It's had plenty of ups and downs but most of all it has seen some big changes.
Earlier on the year saw our family becoming complete with the arrival of Faith. It took Roo a while to get used to her but once he did the bond between them grew & its been such a privilege to see it develop, to see how much Roo has changed for the better since her arrival. He adores her and loves to try and make her laugh. Every time she cries he comes running to me, taps me on the arm with a worried look on his face, says "Faith" & gets me to follow him. As she gets older, moves more he is becoming a bit wary as I don't think he realises she isn't going to stay like a new born all the time! 
The first 4 weeks passed by blissfully until our world was turned upside down yet again with the news that Faith had a profound hearing loss. I took it quite hard but once the shock wore off and I accepted it we got on with…

Hugs are precious

The simple act of a hug can mean so much regardless of the situation. When you are going through some really difficult times a hug from someone brings comfort, makes you feel that you aren't alone, that you are loved. When you haven't seen someone for a long time you hug to show how much they have been missed, when you get some good news, you hug to show your excitement & happiness.....really hugging is the one thing that fits into everything in your life no matter what the situation. People even hug for no reason other than they enjoy giving them. 
There is something about hugs...research shows that hugging encourages oxytocin to flow round your body making you feel all warm & fuzzy inside. It helps you to connect with others & hugging is also good for your health as it lowers your blood pressure, stabilizes your heartbeat and reduces your stress. 
But what happens if you have a child who struggles with the concept of hugging?  Quite often some disabled children don…

The Amazing World of Horse Riding..

Shortly after starting his first term at school we were told that Roo was getting to go and try horse riding therapy! I had heard fantastic things about this type of therapy as quite a few of Roo friends go and I've seen the benefits so was quite pleased that Roo was getting this chance too but at same time I had my reservations as Roo always seemed scared of horses. We go for walks a lot in the country and every time we came across a horse if I tried to go near Roo would start to get anxious and upset. Even though I showed him that they were friendly by stroking them he wouldn't accept it. There were a few times we had the opportunity to try riding but Roo wasn't having it! So I wondered if he would be able to take part in this therapy. To my amazement his 1:1 told me that he was doing really well and that they even managed to get him to sit on a horse!! Wow! We were then given the opportunity to go and watch Roo do a Christmas show on the horses so hubby even got time …

Parents evening

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We recently had Roo's first parents evening. We totally did not know what to expect as we knew it would be nothing like our other children where we are told how well they are doing in certain subjects, how great their reading and writing is coming on, about how they are a credit to the school etc and we always came away feeling so proud of how well they are doing & behaving like model students (if only they behaved like model children at home instead but that's unrealistic isn't it?!)
So off we went to meet his teacher and she at first told us how well he has settled into the class, getting used to the routines.
He has come on so much socially
She said that even though he tends to play on his own at times he is also starting to interact with his peers, plays with them at times, is well known with the older children especially a pair of twins in the older years who like to help him. We told her how we have seen this in the playground as some…

Fear of the Dentist

Many children / adults are often scared of the dentist but often once they have been for their check up they are ok and realise that there is nothing to be scared of as long as they follow the dentist advice and brush their teeth, don't eat too many sweets & so on. But what if they had very limited or no understanding of what a dentist is, what they do, why they have to get their teeth checked? It's very hard to try and get across why its so important to look after your teeth.
Roo as a baby had severe oral aversion as he hated anything in his mouth, he never went through the mouthing stage that all babies tend to go through, he wouldn't tolerate solids until he was almost 18mths old as he didn't like spoons, it also took that length of time to get him to accept a bottle. He just always hated anything in his mouth so tooth brushing was near impossible and caused him so much distress. But as he got older he got better with his food and now accepts cutlery, cups but he…

Another year, another birthday

What will we get him?Would he play with that?What kind of cake would he like?What would he like to do to mark his special day?These are the same questions that are asked every year & every year the answer is : we dont know.We end up just buying something that has lights & sounds as they keep his interest a bit more. Previous years we have bought several different things but after last year where he got overwhelmed and refused to open his presents we decided this year that we would just buy one toy , a new light and a book. Sounds mean but I've learned my lesson as no matter how hard I try he isn't like other children, he has a very short attention span, only plays for a few mins then wanders off to do something like flick the light switches, climb on table,  throwing stuff around and just loses interest in his toys...last year his birthday toys remained untouched for weeks as he just wasn't interested.We noticed that he likes cars so we decided to buy a garage that…

Bangs & Flashes

Fireworks are normally loved by adults and children all over the world… many places put on huge spectacular displays that leave you in awe.  We also know that its also disliked for the effects it has on animals,  making them shake,  cower in fear and unable to settle. I have often heard of some disabled children who are unable to cope with the noise etc but it was never the case with Roo.  I personally love watching fireworks and always have since I was a child,  my older two kids love them too and so did Roo but I think those days are over… 
When Roo was younger I have taken him to firework displays, used sparklers and even had our own fireworks one year and Roo always coped ok but this year that was no longer the case.  My neighbour across the road was setting of fireworks when I thought I would take Roo outside to watch them,  I opened the door and Roo stopped.. Thinking he was just being his usual stubborn self I tried to gently pull him outside and he wouldnt budge, so I lifted hi…

Not on the dirty floor

Baby changers are a great necessary aren't they for whenever parents go shopping, hospitals, days out, resturaunts name it and practically every place will have baby changing units. They are a life saver esp for those poonamis (poop explosions that basically go everywhere and require a full clean set of clothes)! But where are the facilities for those children more specifically disabled children who are often incontinent for much longer , sometimes for the rest of their lives?
There are less than 1000 changing places in the UK alone...that's shocking considering how many toilets there are that come with a baby changing unit. In this day and age people go on about human rights, equality and do everything they can to ensure their needs are being met but what about disabled children/adults? They deserve dignity just like the rest of you, decent changing facilities are needed to make this possible.
Would you sit on a public toilet floor? Would you even walk bare footed…

Tuning her ears

We were looking forward to Faith getting her new hearing aids and seeing how they make a difference for her...with the help of Leo my eldest we chose pink coloured hearing aids (how I wish they let adults chose coloured hearing aids instead of the boring tan or silver coloured ones !) So when her appointment finally came through to get fitted we were looking forward to it. She was 10wks old when she got them. We watched patiently for an hour as they tuned it to her levels of hearing , trying the moulds, getting new ones done as they didn't fit well, watching them put tubes in her ears to try and record feedback levels etc etc. .she tolerated them and even fell asleep during it as it was rather boring for her! We didn't need to learn how to look after them as We already know with our own aids, we were given a bag with various things like battery checker, puffer, cords to attach hearing aid to clothes so you don't lose them, double sided tape to tape the aids to her head! Y…

Halloween is too scary

It's that time of the year again that many children love - Halloween. Dressing up, carving their pumpkins, going trick n treating, parties and most of all the huge amount of sweets they get!!! I must admit I have never allowed my boys to go trick n treating purely because all my friends live too far away & with the world we live in now, its not safe and I get too anxious. But thankfully my boys aren't too fussed and are happy enough with the parties at school and our little house celebration on Halloween night.
But when you have a child with additional needs who is terrified of Halloween you come to dread this time of the year every year, longing it for to be over so that your child can be less anxious and you don't have to worry about going out,  and visiting shops.
Roo's very first Halloween was special as he had just learned to sit unaided 3 days beforehand which was a huge milestone considering he was 3 wks from turning 1. We captured that moment on camera with t…

The older one

The one person who has surprised me with how supportive and caring he can be is my eldest . He is the one who showed me what motherhood is like, taught me the ups and downs of being a parent, who showed me that the love between a parent and child is unlike any other. When his brother Lucas came along he played the adoring , protective big brother until they got to a certain age and sibling rivalry started and still goes on to this day! Then along came Roo and he was so upset when he realised Roo was different to Lucas and had issues, we were often at the hospital during the first few years of Roo life so he was often sent to his grandparents or aunty house to be looked after along with Lucas. He also started to become difficult and emotional at home and in school he was bullied for a while due to having a disabled brother and parents who were deaf. We put a stop to the bullying but the damage was done. He became angry and resentful esp towards me. Young carers helped for a short time…

A simple gesture

This time last year we were told we had to make a decision about what education setting would be best for Roo. After many meetings, speaking to various professionals all who had their opinions, sleepless nights and wishing for a Crystal ball so that you could get a glimpse into the future to see if the decision is the right one we finally made the choice. Despite everyone's different opinions the decision was ultimately up to us as we were his parents. It was so hard as we were scared of making the wrong decision but we realised that we couldn't look too far forward into the future, we needed to concentrate on the present time so decision made, paperwork done and then it was summer break so we put it all behind us and concentrated on having some family time.
As the day drew closer for Roo to start school , the sleepless nights started again (well we already have sleepless nights but I'm talking about the precious hours that I was allowed to sleep but now unable to due to my…

Dancing Stars

Every night I look up at the night sky
I look out for the stars
Some nights there are a few
And other nights there are so manyI see them twinkling in the darkness
Some are brighter than others
Sometimes they shoot across the night sky
That's when wishes are madeBelonging to the swan family
United by our unique children
We see more than our fair share
Of little ones becoming stars too soon Due to the closeness of us all
Some we meet and some we dont
We feel each one so deeply
We grieve togetherThree new stars now shine
In the night sky
Joining all the other stars
Twinkling through the nightThe stars will dance forever
Alongside the music they all loved
A band of swan stars
Who will remain in our hearts forever..

A New Addition...

As you have read on this previous post "Big Brother" we were due to have a new addition to the family .....On the 14th June 2016 Faith made her entrance into the world after what proved to be a very difficult , most painful labour and birth which resulted in me needing a LOT OF stitches! But despite all this she came out pink and different from my other children. When she was weighed the midwife looked very surprised and announced she was a hefty 10lb oz!  I remember asking her "are you sure?!" "Are the scales right?!" We had to be closely monitored because I had GBS and needed IV antibiotics to prevent Faith for becoming seriously ill. Apart from a low temperature and reluctance to feed she was deemed healthy and after much persuasion from me I convinced them to discharge us that night back to the comforts of our home!While we were on the ward Faith underwent checks and found to have loose hips so referral to physio was made for a few wks tim…

Teamwork is important...

When we first started our journey we had a lot of referrals to many different departments to have so many different tests to find a diagnosis. We were warned that it may take some time but they would make sure we had the support and input from various professionals. At the centre of it all at the beginning was the paediatrician. It was them who said "yes there is something wrong with your child and we need to find out what " . They make all the referrals to the different departments and at first I thought how lucky we were that everything about Roo's care was co-ordinated, despite having no overall diagnosis.
Every time we went to see the paediatrician she would spend a long time with us going over everything that's been happening since she last saw us, every appointment was then written in a report which on the back had a huge list of the various names of professionals who were involved in a certain part of Roo's life.

The different professionals Roo is under …

Past, Present & Future...

Its funny how much things can change in a year... this time last year I had written this post for Undiagnosed Day and I spoke about how we were still waiting for answers as the years were flying by, how we had so many questions about his future etc... Well shortly after writing this post , I made peace with myself in accepting that Roo is the way he is and if we never found out then at least we still had support for the time being. I think because we have such a great support network (most of the time and some only after a fight) despite his lack of diagnosis that I finally accepted that getting a label wasn't important as I now felt that as long as I had enough support from professionals then we could get through his childhood and felt encouraged by the tiny progresses he was making. I belonged to a fab support group, one of the only kind to actually support and advise parents/carers who were raising children who were "undiagnosed", that group as many of you ar…