It all comes so easy…

Like most things you are very blind to things around you, until you find yourself in that particular situation. For example I never really noticed pregnant women until I became pregnant. What I mean is I noticed they were pregnant, but it was only when I was pregnant that I actually really noticed the way they walked, the way they affectionately looked down and rubbed their tummies and the way they just seemed very happy. That was because I was pregnant and could relate to them and the way they were feeling. I guess it was also because being pregnant was so exciting and that was practically all I found myself thinking about and dreaming about.

Similarly I noticed children that were disabled that passed me in the street, as I would notice the obvious, such as a wheelchair. Now I find myself in the situation where my own daughter is disabled, I notice different things that are not so obvious. If people pass Isabella sitting in her buggy they probably wouldn’t notice her disability straight away. I now see other children that may or may not be in a wheelchair and notice their similarities with Isabella. Don’t get me wrong however, I certainly don’t stare. I am just more tuned in and I wonder what is wrong with them. Do they have a diagnosis or are they another one of the thousands of SWANS in the UK and around the world. Do they have a good support network? Do they encounter the same problems with the system that we encounter? Are they happy? Do they get bullied? How do their parents cope? All these questions fly through my mind in the split second it takes for them to pass me by; because like when I was pregnant, Isabella and her special needs and undiagnosed condition are always at the forefront of my mind.

I suppose it is kind of like an obsession. I find myself on the internet reading articles on disabilities, conditions and research studies. I want to know as much as I possibly can. I take out books from the library, both factual and biographies. If I come across a word or condition I haven’t heard of I will google and read up on it until I understand it.  I have a thirst for knowledge. I would imagine any family that has a child with a disability is the same and in particular families with a child with an undiagnosed condition more so, as they are always looking for answers.

Although I knew people with disabilities had it difficult, I never knew just how difficult, until it became apparent Isabella had a disability. Just watching Isabella struggle with the simplest of things makes me realise how you can take things for granted and how it all comes so easy for people without disabilities. Just picking up a cup or picking up a spoon to eat my food are effortless tasks and don’t require any conscious thought. Isabella on the other hand cannot hold a cup or pick up a spoon, as her fingers will only close for a few seconds before they open up again and she drops the object.

I can stand up and sit down. I can walk and I can run. My body has these processes nailed down and the steps taken are so quick the movement is fluid. For Isabella her physical development is a slow process where everything is taken step by step. Just practising to sit requires lots of effort and help from me. Isabella needs helping bending her knees and keeping her legs on the ground, she needs help holding her trunk and help with her arms and then she will only sit for a few seconds before she flops forward or flops backward. I can see the determination in her eyes and hear the frustration in her voice, but she will give it her all before she becomes tired.

Isabella may struggle with the things that we find simple in life, but given everything that she has to battle against and despite all of her problems she is always smiling something that we could all learn to do a little more….

Boot Camp for Babies….

I remember Isabella’s Physio mentioning on our very first meeting, that when Isabella was older she would go to a Physio Group with other children. The group would be with children of a similar age and with similar physical disabilities as Isabella. At the time I put it to the back of my mind, as she was only just over a year old and she hadn’t even began her Physiotherapy sessions at home yet. Time soon past and at the start of July last year, she mentioned that the group would be starting in September. I recall her saying they were known for being a bit strict, but she thought we would get on okay, at the time I didn’t think anything of it.

September came and by this time I had been introduced to Zoe and her gorgeous little boy Tyler who had also been referred to the group.  Neither of us had any news on the group and when it was going to start, so I called Isabella’s Physio who chased it for us. I wanted to know, as I wanted to plan the rest of Isabella’s week around it, and if was that important I didn’t want to miss any sessions.We finally got a letter through a few days later saying that we were to have a home visit from one of the Advisory Teachers from the group. The teacher was going to be coming to our houses separately to introduce herself, so we thought why could she not just see the two of us together. We telephoned the office and they agreed that would be possible.

She came the following week on a Friday afternoon. She told us a little bit about the group, nothing that we didn’t already know and then asked us if it was somewhere we would want to go. Zoe and I looked at each other confused, as we thought we were already going and that this was just a visit to meet us first. We explained this to her and she apologised. We asked when we could start and she said it wouldn’t be for a couple of weeks now as she would have to get the welcome letter out to us first. I persisted and asked why we couldn’t attend next Tuesday. She said she would look into and let us know. This visit and the disorganisation surrounding the start date should have set off red warning lights, as to how this group would go.

On the Monday afternoon she telephoned and apologised and said we couldn’t start tomorrow, as another two children were starting, so we would have to start in two weeks time. I was cross to say the least. I told her that I was very unhappy with the situation, as by the time we would finally get to start it would nearly be half term and we would have missed four weeks. Four weeks of supposedly important therapy for our children.

Annoyed I telephoned the pediatrician’s secretary, who got on the case for me. She called me back and said she understood my frustration, but said I had no real argument, as we had been given a place in two weeks time. So feeling deflated I let it go.

Two weeks soon passed and on the advice of the teacher we arrived ten minutes early at 9.50 am. The group ran from 10-12 pm.  We felt quite intimidated, as we were the first parents and children in. There were 8 people in the room who looked at us strangely making us feel very awkward. We explained that we had been told to arrive promptly so the group could start on time. Only then to be told that most parents are usually late!  We were told to come and join them on the mats, I began to feel very uncomfortable as everyone swarmed towards Isabella and Tyler, sticking theirs heads in their faces. Both Isabella and Tyler are not good with strangers, let alone a crowd of people.

Isabella began to get anxious, so I sat her between my legs and reached for some toys.  No sooner had I done so I was sternly told that we practice sitting later, it would be an idea to put her is a different position. Shocked and beginning to feel I had made a mistake I laid her on her back. The same stern voice asked me what Isabella doesn’t like doing, and to out her in that position, as they would have to work hard in this group. Already before the group had even started I wanted to leave. Even writing this now the same sick feeling I got that day is returning to the pit of my stomach.  I tried to make eye contact with Zoe but she had problems of her own. Tyler was no longer in her arms he was practising pushing up on his arms with two strange ladies and not sounding very happy about it. Isabella was starting to get grizzly so I picked her up, much to the annoyance of the stern voiced lady. I explained that I didnt’ want her upset before we had even started the session.

I wondered around the room and noticed the windows looked like they belonged in a prison, black metal framed and you could hardly see out of them they were so dirty. Another face popped up in front of Isabella. She looked and sounded slightly friendlier than the last voice we had heard so asked about giving Isabella a snack about 10.15, as that was her normal snack time. She said snack time was at 11am. I said that could be difficult, as she would get hungry and understandably grumpy. Before I knew it Mrs Stern stepped in and barked that she would get used to it and they didn’t allow children to eat unless they had a metabolic condition. At this point I felt like I was back at school and being bullied. I wanted to leave now. I wanted my husband Paul. This was not what I had signed up for. This was a group for children under 3 years of age with special needs, not a group for adults.

Flushed, hot and unusually quiet I took a seat, as the other Mums were filtering in. I sat motionless throughout the hello song. Looking around the room at the other Mums and their children. I was startled, by Mrs Stern telling us about the first exercise. She rushed through it and didn’t make clear what she wanted us to do. I am a visual learner I need to see how to do something to fully understand it. She came over and said very abruptly Isabella needs to lay her hands flat on the floor. I wanted to scream at her, she couldn’t do that so easily as her hands are fisted most of the time and she has involutary hand movements, including biting her fist. Had she not read her file, did she not understand that she was running a class with children with physical disabilities and that it takes time and patience. I wanted to cry, I wanted to go home, I wanted to go home now. For someone who is normally so vocal I became quiet and it felt like I had been paralysed. Why was I not telling her this is no way to speak to me or Isabella, why were my legs not heading towards the front door?

Now the next exercise was starting, she was clapping her hands shouting angrily, ‘Come on quickly now!’ It was now a tummy time exercise where they had trays full of shredded paper and animals hidden in them. It was now 10.30 am and Isabella was not happy, she was hungry and overwhelmed. Isabella snapped me out of it, if my daughter was hungry I would feed her and she couldn’t stop me. I picked Isabella up and headed to the buggy park to get her snacks out the change bag. Mrs Stern (who I now in my head was calling a witch) saw me leaving and asked where I was going. I told her Isabella was hungry, she told me we would break at 11am for a snack. I told her that Isabella couldn’t wait and wouldn’t be happy doing any activities without eating first and turned on my heel. Leaving her standing there shaking her head and looking cross.

I sat back down with Isabella who was more settled now that she was eating. Mrs Witch stared at me throughout and when I gave Isabella her second biscotti, she hissed at me that Isabella couldn’t have anymore otherwise she would miss the tummy exercise. I explained that she would have to mis the tummy exercise, as if I laid her on her tummy now she would be sick. Looking annoyed she left me and Isabella to it. The tummy exercise was over and the parents and children were heading over to the benches. She came back up to me hands on hips and said we would be having a snack in 15 minutes so I need to come over now. If she had looked closely she may have seen that in fact we had finished and were just having a quick drink.

We moved on to the bench and I noticed Isabella had her name beautifully laminated in stencilled letters. I remember thinking how pretty it was and how horrible the class was. The next exercise was a difficult one for Isabella, as she cannot bear weight on her feet. Isabella had to sit between my legs on a bench and put her feet down on a wooden box. The lady who was slowly moving up the rankings to from Witch to super bitch, came around and said that Isabella needed to work harder and shouldn’t be leaning back on me so much for support. Again she knew nothing, Isabella has an incredibly weak trunk and has a tendancy to flop backwards or forwards. She then continued in a sarcastic voice to tell me that, ‘Isabella doesn’t like having her feet flat, does she?’  I stopped her there and curtly replied, ‘She can’t!’ I was stunned was this lady for real? How was she working with children with Special Needs, in fact how was she working with children at all? It wasn’t even 11am yet, I wasn’t even half way through but I knew at that point I would not be coming back.

It was time for the next exercise; standing, something I know Isabella hates and she was already frustrated. I decided not to make Isabella participate, as she was ready to blow. I heard that already too familiar voice shout crossly, ‘You need to hurry up if you don’t move quickly we will have to miss exercises out!’ I couldn’t belive what I was hearing ‘move quickly’, a lot of these children couldn’t move let alone quick. Surely it was about the quality of exercises and not the quantity?

We then moved onto more familiar territory, exercises her on back. Isabella was much more chilled and doing fine until SHE came over, Isabella tensed up straight away and cried. I picked up and she calmed down. I glanced over at Zoe and it had all been too much for Tyler and he had cried himself to sleep. I could see that the Witch was annoyed that her new recruits weren’t doing as well as she had expected.

Finally it was time for snack and a rest, or so I had thought. There was no special seating, just wooden boxes, which the parents sat on with their child on their lap. There were hand-held mirrors on the table and chopped bananas and pear puree . I reached for some banana for Isabella only to be quickly snapped at, ‘Isabella needs to look in the mirror first!’ They just kept coming, how was not looking in the mirror before eating her banana a problem? Did it matter when she looked in the mirror. We often look in the mirrors at home and talk about her face and features. I did not need to be dictated, as to when we look in the mirror!

Isabella finished her snack quicker than the other children, as she had not eaten long ago. So we sat there quietly, with me wishing the time to hurry up, I wanted to go home. Isabella was looking around the room at the other children, I was looking around the room seeing if anyone else felt as uncomfortable as me. I could only find one person – Zoe. She had been matter -of -factly told that Tyler should no longer be drinking out of a bottle, by you know who! She then clocked Isabella and I sitting quietly, apparently doing nothing. She grunted, ‘If you have finished eating, you need to read a book, we don’t just sit doing nothing!’ I am not violent by any stretch but this lady was fast heading for punch on the nose!

Before I knew it I had a tray with a book and matching animals placed on the table in front on me, by the Advisory teacher who had visited me at home. I started to read the book to Isabella, but apparently I wasn’t reading well enough, as I had a parrot (the Advisory Teacher) next to me making the animal noises and asking Isabella questions about the animals! Isabella didn’t know where to look or listen. I decided now would be a good time to change Isabella’s nappy, have a minute alone to compose myself and kill some time.

I found the changing room and no sooner had  I pulled Isabella’s trousers off than the Teacher waltzed in. She asked me if I was okay. I told her I was fine. I had met the woman once before I wasn’t about to confide in her how much I hated the group and that ridiculous lady! She soon left realising I wasn’t going to tell her anything.

Finally after a long drawn out nappy change, we rejoined the rest of the group on the mats for some singing. Something both Isabella and I usually enjoy, but neither of us were feeling it. After singing it was time for parents to grab a coffee and leave the kids for 10 minutes. Zoe and I were the only Mums that stayed with our children. We were given funny looks, Isabella is not good with strangers and she hadn’t settled, so there was no way I was leaving her. Tyler had now woken up, but didn’t want to laeve Zoe’s side. Both Zoe and I had two people either side of us interfering when we were playing with our children. I was showing Isabella a boat with stick men in and both ladies to the left and right of me were jingling instruments, trying to get her to hold them. Isabella was very confused, starting to grizzly again and kept looking up at me for reassurance. I told her that it wouldn’t be long and we would be home.

The goodbye song couldn’t have come quick enough. After it finished Zoe and I got our bits together, we originally were going to feed Isabella and Tyler here, but both decided we wanted to leave as soon as possible. No sooner were we out the doors we had we started to say how much we hated the group and didn’t want to go back.

The journey home was a non stop rant. Both children whacked out, were asleep the whole way home. We had both decided we didn’t want to go back. I couldn’t wait til Paul got home, I needed a cuddle. I waited until Isabella was in bed and told him how horrible it was and for the first time in a long time I cried and cried. This made Paul very angry, that the day I had built up in my head had gone so horribly wrong.

The next day I complained and the Advisory Teacher came out the following week for a meeting to discuss my issues. She bought along another colleague with her. Before I could say anything Paul stepped in. He deliberately had come home from work to give them a piece of his mind and explain how angry he was that I had been so upset by it all. I felt so proud I had stood up for Isabella and Paul was atnding up for the both of us. When he was happy that he had made his point he left me to it.

I told them everything, how I felt, how I was made to feel uncomfortable, how rude the particular lady was and how I wasn’t going back. The advisory Teacher got upset and apologised and said the lady in question had been spoken to. I told them that I teach children and had never spoken to children the way we were spoken to. Her colleague chipped in saying it was conductive teaching. I had read up on this and their class certainly didn’t reflect the values of conductive teaching. She also said she was shocked and that no one had ever complained before. I found this hard to believe. I asked her if people had been to the first class and not returned, she said they had. I laughed wasn’t that their way of complaining! They asked me if I would reconsider I said no, it wasn’t for me or Isabella. Once bitten, twice shy and all that.

We now have home visits from the Advisory Teacher instead and Physio sessions with Isabella’s Physiotherapist still continue as before. On her first visit we started again and she again apologised for the miscommunication in the organisation of the group and for her making me feel uncomfortable. She was honest with me and said that she was new to the area and the group. I told her that I didn’t mean to come across rude but I am Isabella’s advocate and I will fight (metaphorically speaking) anyone that is not doing right by Isabella. I accepted her apologies and we started afresh.

When she visits she tries her best to ensure she is doing everything right, she brings different toys for Isabella and on each visit and is constantly asking if there is anything else she can do. I guess she is weary, as she knows I am not one for keeping quiet where Isabella is concerned, but that can be said of any parent. I do feel however that as a parent of a child with special needs, who has no voice of their own, you do fight harder and seem to have more battles more than most.

It’s not like it is in the movies…

I have sat here this evening and travelled back in time through the magic of photos to 2 years ago today. Paul and I, along with my Mum and Dad were sat in my hospital room waiting for Peanut to make her appearance.  I honestly don’t know where the time has gone, but I remember it like it was yesterday.

Those of you who have had children will understand when I say it’s not like it is in the movies. In the movies when her waters break, the mother is rushed into hospital, given a room immediately and after some dramatic screaming, lamars breathing, swearing, husband slapping, husband fainting and few pushes the baby arrives screaming.

When my waters broke at 2.15pm on the 18 April, Peanut kept us waiting until 12.54pm the following day, but it was so worth all the pain and hanging around. My waters broke on the toilet and it just seemed like a very long wee! There was meconium in the water, which meant Isabella had pooed so when we telephoned the Nurse and she said to come down immediately so they could monitor Peanut. I remember standing in the living room and putting down the phone and telling Paul next time we come home we will be parents. I even told Daisy (our Dog) where we were going! We were just so unbelievably excited and nervous at the same time. So we picked up the bag which had been ready for months and made our way in the car to the hospital.

For the first time ever there was no traffic and by 3 pm we had arrived at the hospital. No nurses came running out to the car to meet us and I wasn’t screaming in pain (yet). We checked in and followed the Midwife to the room where I was rigged to machines to monitor Peanut. Peanut was fine and the Midwife told us there would be a wait as my contractions hadn’t even started yet. Hours passed and my parents arrived with food supplies. How my Father didn’t get a speeding ticket I will never know. They had made it in record time from Market Weighton in Yorkshire to Oxford, just 3 hours! I think they were a little bit disappointed that not a great deal was happening, and they probably would have liked the dramatic Hollywood screams to suitably match their Hollywood stunt driving!

At 8pm, without a contraction in sight I was moved onto the ward in my own private room. That is where reality really sank in, the Midwife was warming the towels on the radiator and for the first time we saw the little hospital cot that Peanut would be in! In just a few hours (or so we thought) Peanut would be here.

We all couldn’t have been anymore wrong. At 9pm I was started on the hormone drip to induce me and to start the contractions. I remember my Dad and Paul laughing and asking constantly if it hurt yet and for a few hours it didn’t. The Midwife gave me a menu (sadly it wasn’t for food!) for aromotherapy oils and my Mum massaged my tummy which was nice and relaxing. The Midwife said I was having contractions, but to start with I didn’t feel any pain.

 I finally began to feel the contractions so I initially opted  for Gas and Air. That was a surreal experience, it was like I was drunk and I got the giggles, although sadly it had the same side effects as alcohol and made me sick. So the Midwife offered me pethidine. By now we were into the early hours of the morning and I had said to Paul to sleep as he would need to conserve his energy for when Peanut arrived. My Dad who had been the Stand Up Comedian throughout the proceedings had also taken a break from entertaining. I was snuggled up on the hospital bed with my Mum and she was affectionately rubbing my head.

A few more hours passed and everyone was asleep. I remember listening to Gregg James On Radio One it was painful, as were my contractions. I was thinking I just want to listen to Chris Moyles and when he starts I will be able to have my Epidural. I got Paul to tell the Midwife to get the anesthetist ready for 6 Am, which was when the pethidine ran out. I think when six o clock came the whole ward decided to go into labour, as the anesthetist came and the Midwife was nowhere to be seen. Unfortunately he couldn’t administer it without the Midwife present. At this point I did ever so slightly turn into Linda Blair from the Omen I was possessed and in extreme pain.

Over the course of the next two hours, I went through this hellish pain without any pain relief at all. The pain was becoming so unbearable that my screaming was upsetting Paul – no one likes to see their loved one in pain. Thankfully my Mum who understood the type of pain I was in was able to talk to me and tried to tell me to breath, really I thought was that the best she could come up with. My Dad to top it off tried to crack a joke by saying, ‘It doesn’t really hurt does it?’, I almost swung for him. Finally after what seemed like an eternity I got the epidural and situation normal was restored.

More hours passed and it became apparent that Peanut would need some help to come out. Shortly before lunch I was wheeled into Theatre. They had given me a general anesethetic in case I would need to have a C-Section. Talk about numb my legs felt like racks of lambs and I couldn’t put them into the stirrups! This tickled Paul.

Laying on the bed with lots of strange people looking down at me and running around me was strange to say the least. Paul on seeing this took my hand and told me that in just a few minutes we would get to see Peanut. I couldn’t believe it. I was so excited and exhausted at the same time. The Doctors turned Peanut and with two pushes she was out. This beautiful little person that had been growing inside of my tummy was now on my tummy it was amazing, Peanut was amazing. Peanut was now Isabella, it was a magical moment and one I will never forget.

Time for a Diet Coke Break….

It’s funny how having children can change you not in a bad way, but in a good way. I have always been a loud, bubbly character always on the go and always talking (my family members call me Fog Horn -Leg Horn) – that side of me hasn’t changed. Now however I like it when it is quiet and when I am quiet too! I take real pleasure in sitting in silence, something which I found very difficult in school! I love to sit down, wrapped up in my cosy pyjamas, when Isabella is in bed and just slowly unwind. Once I have had my few moments of blissful silence, I like nothing better than the sound of my Diet Coke can being opened and poured by Paul. My Diet Coke Break is my highlight of the night, sounds silly I know but that sound signifies ‘Me Time.’ It means that I can watch American Boxsets like, Grey’s Anatomy and One Tree Hill and lose myself in other people’s lives that are so far removed from my own. Sometimes however the episodes can be a bit too close to home and make me cry. I don’t stop the tears, I let them fall, as it’s okay as Isabella is not around to see them. Sometimes I just need a good cry just to let it all out.

That time of night is also about making time for Paul and I. We try to make a point of talking about things other than Isabella. Not that we don’t want to, it’s just that we try to remember that as well as being a family and parents to Isabella, we are couple and a husband and wife to each other. It doesn’t always work out that way as, I have said before there are not enough hours in the day, so sometimes we spend the night talking about Isabella and her progress and her meetings with professionals.

As a couple we are easily pleased and a good film or boxset, our snuggie blankets and some chocolate and lots of cuddles make for a nice, relaxed evening. Don’t get us wrong we do like to go out and we still do on occasion, but with being tired and no family leaving close by we just get on and do. I think as long as we are making time for each other that is good enough. The times we do then get to go out are even more special and we make a real effort.

It’s funny I think I am slowly turning into my parents. When we are snuggled up on the sofa and the phone rings, I find myself saying ‘Who’s that, who’s calling at this hour?’ and it’s usually only 9 0′ Clock. I now understand why they said that though, you work all day and you just want to relax, sometimes mustering up a conversation on the phone is hard to do.

Not long after I usually end up falling alseep on the sofa and miss the end of the film or the programme we have have been watching. I think it’s because I sit down and can hear Isabella quitely breathing on the monitor and I relax. I know she is soundly alseep and doesn’t need me (for the moment)and my brain tells my body to ‘Stand Down’…

All the small things…

Ever since Isabella was born Paul and I have been excited about everything to do with her, as most parents are. When she was first born we couldn’t take our eyes of her. The way she coughed, rubbed her face and the noises she made when she was sleeping were simply adorable. When she was three days old I remember she was asleep in the moses basket in the living room and we were watching the telly.Well I say watching we were like zombies really and couldn’t really concentrate on anything, as we were too busy watching her sleep! One advert though caught our attention. It was the Vodafone advert where the Daughter rings her Father and asks him to pick her up, as her car had broken down. Paul turned to me with tears in his eyes and said he would do the same and that he wouldn’t let anything happen to our Baby Girl, and it’s been the same ever since.

The first time she smiled, laughed and rolled over were big, exciting milestones, which we photographed, recorded the date and put in her Photobook of her first six months. We would even make a big deal of the small things that she would do. Now the small things are BIG. What may seem like nothing to an outsider means a massive deal for us. The smallest of things that Isabella does gives my husband and I the greatest of pleasure. She is one determined little lady and it is quite unbelievable the amount of effort that goes into everything that she does. She cannot speak, but her expressions say it all. You can see the determination in eyes when she is trying to roll over for example and the pride in her smile when she succeeds and we praise her for her efforts.

I keep a daily diary to keep note of when Isabella does things, for example around six months ago she managed to sit unaided for about 10 seconds. For that 10 seconds I was so proud and Isabella knew it, as she looked back at me beaming. Sadly she hasn’t done this since but she is still giving it her all every day and still remain proud.

More recently she has turned her attention to her time spent on her tummy. At the start of the year she started to ever so slightly bring her knee up, now she will lift her bum up high in the air as well. It will take a lot more time and a great deal of effort but I know she is so determined to get moving. Her new trick now is to roll over onto her tummy in her cot (which takes some doing as there isn’t a great deal of room to manoeuvre) and really push up on her arms peeking through the cot bars with a cheeky grin looking for me!

Isabella has involuntary arm movements, which strangers in the street mistake for a wave, so very often Isabella has people waving back to her and saying hello! Despite these involuntary movements, Isabella is intent upon doing what she wants to do with her arms. My husband and I were blown away when she first gave a high-five. To be honest at first we weren’t sure if it was a fluke or just another involuntary movement. She did it a second time with such conviction and looked straight at my hand, we knew that she had mastered it. To top it off just the other day she did it with her other hand, I was smiling from ear to ear, as was Isabella.

I could sit here for hours describing in detail the things that Isabella does and how proud that makes us feel, but I won’t. Instead I will say how Isabella has shown my husband and I that determination and perseverance go a long way. We don’t know if she will ever crawl, let alone walk or talk. She may never be able to do things for herself, but we know that she will try to do the best that she can and with our support and help she will reach her potential whatever that may be. Isabella despite all of her difficulties hasn’t given up and neither will we….

You got a friend in me…

People used say to me how I am coping really well and they don’t know how I do it. I found that hard to understand, as if I had given up what would become of Isabella? She is totally dependant on me and cannot do anything for herself. I know that people deal with things in different ways and that some people may go through depression, anger or even guilt. I guess that is why I was anxious about meeting other Mums in the same boat as me, I felt I was in a good place and getting on and dealing with the situation. I didn’t want to meet anyone who was coping in a different way. Don’t get me wrong I am not saying that I don’t feel angry when I see drug users abuse their rights as parents or sad when I see Isabella’s friends who are walking and talking. They are just fleeting moments and they don’t interfere with time that I spend with Isabella. I always promised myself that I would stay strong in front of Isabella and not cry. When Isabella’s Physio suggested that I meet up with another Mum that lived locally with a little boy of a similar age, I was hesitant. She gave me her phone number and it stayed on my kitchen notice board for weeks. I would glance at it everyday, but didn’t feel quite ready to make that call. I would say to the Physio to tell her that I was busy and would call her soon. Finally I plucked up the courage and sent her a text message and I was glad I did. We arranged to meet the following week it was the earliest we could manage inbetween hospital visits and home visits – already we had common ground and hadn’t even met yet.

We hit it off instantly and I was completely honest with her about my intial hesitancy. On our first meeting we had so much to say and so many experiences to share, we just didn’t have enough time! Over the coming weeks it became very apparent the way we were coping and the way we saw the future was very similar. We found both our children are very similar in character and their behaviours. Isabella can be very weary of strangers and new situations. She is a little Mummy’s girl and in certain situations only Mummy will do. It was refreshing for someone to be able to understand this and say they go through exactly the same. In fact it was nice to be with someone who understood everything. The times I had spent with family and was made to feel awkward or uncomfortable, she understood. The times I had expected more from a professional working with Isabella and felt let down, she understood. The feeling of being under pressure and scrutinized by outsiders, she understood. The list was endless. I had finally found someone who I could talk to, who genuinely understood. My friends and family try, but no one ever truly understands a situation until they themselves are in it. I now feel I have someone I can turn to and offload without always putting on my Mum or my friends and it works both ways. I feel very lucky to have found her.

Our friendship has grown and we now tackle things together head on. We have had some uncomfortable moments where we stuck together.(That’s for another blog!) We have lunches together, go swimming, shopping and go to the park with the kiddlywinks. In fact we joke and say our little ones are a couple! Although we need to find sometime together without the children, so we can get to know the sides of each other that aren’t Mummies. I know that is hard as it’s a full time job, but we have promised ourselves that very soon we will be putting on our glad rags and painting the town red…well may be just a shade of light pink 😉

A beautiful flower…

After Isabella’s first appointment with the pediatrician and he had uttered the words, ‘Probable Cerebral Palsy’,  I was obviously upset, as my deepest fears had been confirmed. Strangely though I also felt relief, as I would no longer be alone and in the dark, we would now have a team of professionals working with us to help Isabella. My husband Paul, however was in shock, as he truly believed there was nothing wrong and that she was a bit slow on her reaching her milestones, but she would catch up. Paul and I spoke at length for hours and he said he knew that she was still the same little girl, our ‘normal’ had just shifted. We agreed that we would stay strong for each other and Isabella and that as a family we would deal with whatever came our way.

Like me he was adamant that we needed family and friends to be strong and not cry, as it wouldn’t change anything and Isabella wouldn’t understand. Isabella was still the same little girl that she was the day before, just now there was an explaination, as to why she wasn’t developing as she should be. I thought it would be a good idea to write a poem from Isabella to family and friends so they could understand how we wanted them to deal with the situation. So I set to work and kept a pen and paper by bedside, so I could jot things down as they came to me. Paul and I sat together and made cards with a photo of Izzy on the front and the poem inside. We already had spoken to family and close friends on the phone and hoped the poem would make it easier for them to understand.

I know the news,

Maybe hard to take,

And for a while,

Your heart may ache,

 

But it’s still me,

I am still the same,

Just now what I do,

Has been given a name,

 

I don’t need sympathy,

For I am still here,

And I can breathe,

 Laugh, see and hear,

 

When you see me,

Please don’t cry,

For if you do,

I will wonder why,

 

I am still the same,

Little girl as before,

Except now my path,

Leads to a different door,

 

Where this door leads,

We cannot be sure,

But I have my Mummy & Daddy,

Who I  truly adore,

 

Things will take time,

And patience is a must,

I need people around me,

Who will support and trust,

 

Please don’t treat me different,

I am person just like you,

I will just need help,

In some things that I do,

 

The best way to describe me,

Is as a beautiful flower,

Who will eventually bloom,

With great, strong power,

 

My petals will open.

When they are ready,

 But this will take time,

And will be slow and steady,

 

We will find out more,

In the next months or so,

And Mummy & Daddy,

Will tell you what they know,

 

This comes with lots,

Of love from little me,

The one and only,

Isabella G. xx

The ties that bind…

I have a very close relationship with my parents and my brother and I am very lucky to be able to tell them anything and I have always had their support and backing.  I know not everyone is so lucky and some people even barely talk to their family let alone confide in them. I have a close connection with them and speak to them often, as they don’t live nearby.

Funny thing is despite coming from a close family I wasn’t interested in having a family of my own when I was younger, I just wanted to meet lots of new people and travel the world. I had only got as far as Cyprus when I met the love of life Paul who is now my husband. We met each other when we were 21;we loved to party and children were certainly not on the agenda. I had even told Paul that I wasn’t sure if I would ever want children, but he loved me and stayed with me regardless. I guess he must have known that my maternal instinct would kick in one day, and kick in it did – the timing couldn’t have been more off. I had just started University when Paul’s baby sister announced she was pregnant. I was so excited for her and as I watched her bump grow I became very broody. When I first cuddled Lily I knew that I desperately wanted to become a Mummy, but I remained focused and saw out my three years at University. Over the three years Paul caught up with me and was also very keen on becoming a Daddy. In that time to make matters worse my brother and his wife had a baby girl called Lucy. We were both besotted with our nieces Lily and Lucy and idolised them. The plan was for me to get some teaching experience under my belt for a couple years before we would start our own family, but things in life never quite go to plan!

I went to my Graduation Ceremony with ‘Peanut’ only 10 weeks old in my tummy. Only close friends and family knew but I wanted the world to know and I am sure they did the way  I was constantly stroking my then flat tummy. I loved being pregnant and idea of having something that Paul and I had made growing inside of me was amazing. At 21 weeks I finally started to show and was pleased that I could show off my bump to the world I never once felt fat; I just felt proud. Both Paul and I loved feeling Peanut kicking and moving around inside me. He would speak to Peanut and Peanut would respond with an excited kick! From 11 weeks we took pictures of my bump and measured it’s size, all the photos, along with a photos of the preganancy test sticks went into an photo book titled ‘Peanut- The Story of My Birth.’ Friends and family couldn’t believe just how excited we were on becoming parents. My Face Book statuses would always be about what Peanut and I were up to. Towards the end of the pregnancy I even started a blog with a first hand account from Peanut! http://allaboutpeanut.blogspot.com

When the umbilical cord was cut the tie between the two of us wasn’t. The first cuddle was so very, very special as every parent knows. It truly was the happiest day of our lives. Another moment I will treasure forever is the first time she took milk from me. It was amazing, at less than an hour old she knew just what to do, it was so natural. I feel that breastfeeding brought us closer together, she would always fall asleep afterwards, so I always got some bonus cuddles! I remember when she was tiny the way she would look up into eyes just before she fell asleep just to check I was still there and she still gives me the same loving look now.

We must have taken millions of photos of Isabella and she even has a photo book called ‘365 Days of Isabella’, where it is just that, a photo of her from every day of her first year! From her first smile, laugh to the first time she rolled over we have just been so proud and full of love for our baby girl. We have made photobooks that show what we did together as a family. It was supposed to be a one a year, but we have had  so much to say and so many memories we want to treasure we have split them into six month blocks.

Isabella is our world, everything we do is about putting her needs first; If Isabella is not happy we are not happy. Everyday she brings us happiness and a warm and fuzzy feeling like no other. Despite everything she always has a smile on her face and a sparkle in her eyes. I hope that in years to come and whatever the future holds Isabella will still be able find comfort and support in the arms of her Mummy and Daddy, the same way I still do today …..

So tell me what is it you do?…

I am now a full time carer and Mummy to my special little Monkey Isabella, but I am a Primary School Teacher by trade. What ever job I under took from being a Travel agent, a Holiday Representative to a Holiday Entertainer I took seriously and would make sure I did my upmost to give the best possible service. I guess that’s why some of the professionals we encounter seem to disappoint me, I have extremely high standards.

When I was a Travel Agent I would treat every customer and holiday enquiry like they were the first of the day. I would listen and make sure I found the best holiday to suit their needs. It didn’t stop there however, I would try and remember their names when they came in to make payments and even if I was overworked (it wasn’t for them to know) I would always smile and give great service. When the shop closed at 5pm I wouldn’t leave until all the customers I promised to call back had been. Even when I got home I would watch holiday shows and programmes to build up my knowledge. I even dragged my husband around different hotels when we were on our own holiday, so I could go back and tell customers of my first hand knowledge! Doing the best and going the extra mile is something that has been enstilled in me from when I was little. I was never trying to out do anybody I just want to give the service that I would expect to be given.

The same can be said for when I was teaching. I know society think teachers are overpaid, have it easy and get loads of holidays, believe you me we earn and deserve those holidays. Contrary to popular belief we don’t stop working the minute the bell rings at three. I, like thousands of teachers do, didn’t leave school until 5.30 and then took work home with me, I would work weekends and at times until the early hours of the morning! I am not telling you this to brag, I am telling you this to make you understand that I loved my job and wanted to make sure that I was doing the best for my pupils and my school.

Which leads me to the point of my blog. After Isabella had been seen by the Paediatrician in March 2010, the ball began moving very slowly. Intially we were introduced to Isabella’s Physio, but the waiting list for the Occupational Therapist was a long one. We were desperate to meet her, as we had a list of questions we wanted answering. We finally got to meet her in the August, sadly I was disillusioned. The questions I had for her she wasn’t able to answer. I had asked her if she could recommend a baby sling, a bike seat, high chair and a buggy that would support Izzy, as at 18 months she was unable to sit unaided and had a weak trunk. (which hasn’t changed to date) She said she couldn’t and that these were questions she had never been asked. I was shocked by this, but to be fair to her she did say she would find out, but boy did she make us wait. She finally got back to me the following month and said that there were no special needs slings and she had requested a Bee Chair fitting.  We were however entitled to a special needs buggy.. Great we thought, but what an absolute shambles the process turned out to be! The Wheelchair Enablement Centre had apparently lost Isabella’s referral and the OT asked me to chase it! I have no problem with doing things for Isabella but I didn’t understand why it was up to me !? Needless to say I did and at the end of October we finally got an appointment to see a supposed ‘specialist’, who would assess Isabella and arrange a buggy for her to suit her needs. Our OT had been speaking to the centre and was recommended the Phoenix buggy, as it would give Isabella the support she needed.

The appointment was on Friday morning, so it meant Isabella missed her ‘Sing & Sign’ class. After a dreadful drive through traffic in Oxford and a parking nightmare with Isabella screaming throughout, we finally arrived at the clinic. Feeling stressed and having doubts (as one of my friends had already seen someone and said they would rude and unhelpful ) we took our seat and waited patiently. On cue Isabella decided to fill her nappy at the time we were due to go in. Typically the toilet was difficult and the door kept opening whilst I was struggling changing Izzy’s nappy on the floor, as there was no change table! What I haven’t mentioned was the toilet faced the waiting area! I came out red faced and flushed and found the Wheelchair service advisor looking for me.

She led me through to her office and asked me what I was here for!? I could feel the veins in my head begin to pulse – surely she knew the answer to this! Taking a deep breath I explained that I had asked the OT if she could recommend any buggies for Isabella and that she had said I was entitled to one from the Wheelchair Service. No sooner had I told her this, she glanced over at the Graco buggy and blunty asked what was wrong with it!? Wanting to scream at her I remained calm and said that Isabella had outgrown it and we were unable to fasten her in using the 5 point harness.  She looked at me like I was making it up and then asked to see Isabella in it, trying my best not to lose my cool I put Isabella in the buggy and she yanked on the strap to see if she could magically make it longer! She then asked me if I had been recommended a buggy and told her that we had been told about the Phoenix. Very quickly she cut me short and said to Isabella, ‘You sit nicely don’t you, you don’t need that much support.’ By now I was fit to burst. She then turned to me and said that my best bet was to get a buggy from the high street. How I refrained from slapping her I don’t know instead I turned to Izzy and said ‘Your Daddy is going to be very cross, we missed our signing class, you got upset in the car and we are now being told to go to the high street after waiting months to come here for nothing!’ With that she quickly asked me if I wanted to see the buggy and sit Isabella in it!? Erm yes please isn’t that what I came for! After a battle of wills and her telling me that it is a cumbersome buggy and not very practical she told me if we wanted it would be here in 8 weeks! I said we did and left feeling totally disatisfied and more disillusioned than ever! To this day I still don’t understand why she is in a job like this, she has no idea how to deal with people and certainly doesn’t know how to do her job.In less than 3 minutes without even holding Isabella she had supposedly assessed her needs.

I could go on and on but it would be a record long blog! The OT is pleasant and nice, but my husband will often say what does she actually do? Even before Isabella had been seen I would spend hours on the internet looking for things that would help and support Isabella. The best find was her Recline and Grow Booster Seat which could be fitted to any chair and made feeding Isabella a dream, as up until then she was being fed in her bouncer. On the advice of the Pysio  I waited before buying anything else as the OT could help and make recommendations! Now I have gone back to doing my own research and seeking advice from other Mums with children with special needs. In fact it was a fellow Mum who recommended the Rainforest High Chair, which is the best seat Isabella sits in.  I understand that every child with special needs is different, but if I was an OT I would be aware of what products are on the market that may be suitable and make life easier for parents. For example both the Recline and Grow Booster Seat and Rainforest High Chair recline and the trays sit close to their tummys therefore making it easier to feed a child that cannot sit unaided.

I know that I probably expect too much from people but then I only want the best for Isabella and things to go as smoothly as possible.  Just small things like being on time, picking up messages promptly and keeping promises go a long way. Professionals who visit us at home will very often say to Isabella oh your toys and sensory things that Mummy buys you are much more interesting than mine. Instead of saying something do something about it, buy some new toys to take around to patient’s houses. A lot of Isabella’s favourite items are only from the pound shop! When it came to fitting Isabella in the Bee Chair the OT  said that we should wait and let her do it. That turned into a nightmare, as she was no more competent than myself or my husband. Isabella became very stressed and had a melt down whilst she was fiddling with it, dropping screws and reading the instruction manual.

My final note has to be about lack of knowledge. Myself and a friend are looking for chair that is portable and that can be taken to restaurants and friend’s houses. We thought we had found the answer in the Leckeys Squiggles seat sadly it was too small. The only bonus was that the Leckey Rep mentioned the ‘Kidz South Show’ on the 15th June, which we had never been told about by anyone. Not to be outdone the OT then said she could always get the Joncare rep to come out for a seat fitting. On doing further research my friend found that the Joncare showroom is only 20 minutes away from us and open to the public! Now surely that is something the OT should know? What’s that well known phrase again? If you need something doing, do it yourself……

Life under a microscope..

It’s strange the number people we have seen, spoken to, dealt with and encountered since the 7th March 2011 – the day that confirmed our doubt’s about Isabella’s development. Since that day Isabella has undergone examinations, tests and been handled by more strangers than a two year old without a disability. This is something now which has now become the norm and given that Isabella is not great with strangers she is a star and takes it all in her stride (most of the time.) 

I know that all these home visits, hospital appointments, check ups and tests are all to try and do the best by Isabella and to get the answers that we so deperately want, but sometimes it does feel like we are under a microscope. Like other families who have a disabled child we have regular visits at home from professionals, namely a Speech & Language Therapist, Physiotherapist, Occupational Therapist and an Advisory Teacher. On the days when these people visit I try to make sure that everything is tidy as it can be, silly I know as they come to visit Isabella but I do feel that they make judgements when they visit families. Anyone who has a child, let alone a child with a disability knows how busy the day is and how many things you have to squeeze in.  Now as a parent I truly understand the phrase, ‘There are not enough hours in the day!’ So I don’t want these people to make negative thoughts or  judgements to their friends or collegues when they see the breakfast dishes still in the sink or the washing sitting in front of the washing machine waiting to be loaded.

Similarly I feel myself and Isabella are sometimes watched by family and friends when we go about our ‘normal’ routine. For example Izzy cannot hold objects and she has involuntary hand movements and is therefore unable to feed herself. So at nearly two Izzy is still spoon and finger fed. I understand that people are curious, but is it really necessary for them stare constantly at Isabella whilst I am feeding her? Sometimes even pulling up a chair when they themselves are not eating. She has been fed like this since she was weened at six months, it is nothing new. The same can be said when I change her nappy, come on is it really that interesting?

It sometimes feels like I have eyes boring into the back of me, scrutinizing what I am doing with Isabella. I am extremely confident and know that I do the best for Isabella, but sometimes people make me feel uncomfortable. If I feel uncomfortable now, how will Isabella feel when she is older? I know I can be sensitive and I am the first to admit that but would they stare as much if Isabella didn’t have a disability? I doubt it. I know that staring and finger pointing is something Isabella, as she grows up is going to have to deal with from strangers and people in the street. Hopefully having said that perhaps with enough media coverage and diability awareness, society will finally accept that everyone is different and there is no such thing as ‘normal.’