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All posts for the month May, 2012

Guilt

Published May 29, 2012 by swanfreddie

I feel pregnant with Evie after what seemed like an eternity of trying. In reality it was only a few months. I knew I was pregnant before I took the test. I’d heard alot of people saying that you will just know when your pregnant, your body changes, but until you feel it, it’s hard to understand what they mean.
I didn’t want to get too excited until I had done a test though. I remember standing in the bathroom of our apartment with my partner not daring to look at the stick. But it was positive & we were both ridiculously excited. We decided not to tell anybody until we had been for our first scan. To be sure all was ok.
I remember not long after finding out I was on my hands & knees cleaning the kitchen floor. But I was being really careful not to over do it, I was pregnant, I couldn’t scrub the floor properly & risk bouncing the baby around to much.
From then on I was so careful with everything, I avoided lifting anything, I ate the right foods, I stayed fit and just did everything I could to protect my little baby growing in my tummy.  I was constantly down the doctors if I felt any little niggle or pain and spent alot of the time I was pregnant panicking that something might be wrong with the baby. I took tablets during the pregnancy to make sure I was getting all the vitamins I needed, they cost a fortune but I wanted to do everything possible to make sure the baby was healthy. I went on my maternity leave 12 weeks before Evie was due & spent most of the time relaxing in bed watching daytime tv doing as little as possible. We lived with my partners parents before Evie was born so I had no housework to do, no food shopping or bills to worry about. I just did everything I could to ensure this baby was safe & I saw it as my job grow this perfect child.

And perfect she was. She was ridiculously gorgeous. I was the proudest mum in the world.

I fell pregnant again 4/5 months after Evie was born. This pregnancy was very different. For a start Evie was still a baby so I couldn’t avoid carrying things. She was very reluctant to be left on her own so I spent alot of time carrying her around with me, it was hard towards then end of the pregnancy to carry a 12 month old baby whilst being 8 months pregnant.
We were also in the middle of moving house. There was lots of boxes to be carried & emptied. If I wasn’t carrying Evie I was carrying household items & trying to make this new house in to a home. There was alot going on in life so the healthy diet I had when I was pregnant with Evie disappeared & was replaced with fast food. I didn’t bother taking any vitamin tablets & I was just generally so much more relaxed about being pregnant the 2nd time around. It never crossed my mind that anything I was doing would harm Freddie. The scans had been fine so there was no reason to worry.

But all wasn’t actually well & Freddie was born with an undiagnosed syndrome causing him to have complex health needs. He was still incredible perfect to me though, despite the doctors listing off all his ‘dysmorphic features’
But this was when the guilt started. Is this my fault? Did I do damage to Freddie when I was carrying a big weight like Evie or one of the many boxes around? Was my bad lifestyle to blame? Was it something I did?  Is it because I didn’t bother taking the vitamin tablets? Did I not look after that precious baby growing in my tummy well enough? Did I not protect him?
The fact that the doctors have no idea what is wrong with Freddie makes it play on my mind even more. If they could tell me he had this or that syndrome then that would ease my mind a bit. It would mean that actually it wasn’t my fault. But they can’t. They don’t know whats to blame. The guilt I feel thinking that it could be me is constantly lingering in the back of my mind, niggling away at me.

I despise seeing anyone who is pregnant with a child smoking or drinking. Sadly it’s something I see quite often. Particularly when we are at a hospital appointment at the childrens unit, there will always be one mum to be outside smoking whilst heavily pregnant. I feel like shouting at them to stop & think before they potentially harm their child. The guilt will live on in you forever. The baby inside you is the most precious thing in the world. It’s your job to protect it and keep it safe.
Looking back I wish maybe I hadn’t lifted them boxes, I wish that I did think more & had eaten a healthier diet. It may not have made any difference what so ever but at least the guilt wouldn’t be there.

#SpecialSaturday – Toileting

Published May 26, 2012 by swanfreddie

Freddie will be 2 next Friday. I suppose 2 years of age is around the time alot of parents start the toileting process. Evie was 22 months when she went into knickers so really I would of been trying to get Freddie out of nappies around now but life doesn’t always go to plan.

For us the process of beginning toilet training is along way off.  But that’s fine we have accepted that & it’s not something I even give too much thought to. Although I must admit seeing little pairs of super cute childrens underpants does make me a bit sad that we are not going to be able to use them yet, but hopefully one day in the future we will be able to help Freddie understand how to use a toilet.

I’m in the middle of getting a new big boy changing bag sorted for Freddie. If we are going to be changing nappies for years to come we will be doing it with style. I’ve just bought a nice new adult sized changing mat. Baby changing mats are too small for Freddie now so this seemed the next best thing & we will be able to use it for years. It is pretty huge! but Freddie does wiggle alot so it’s probably a good thing. It folds up small though so fits perfectly in a changing bag.

The dreaded question

Published May 22, 2012 by swanfreddie

I went to the park today with a friend & her two children. One 3.5 years & one just turned 2. As usual when i’m around other children Freddies age I end up feeling a bit down. This little girl was talking, playing, laughing, climbing & running around. Everything I long for Freddie to  do, who on the other hand was sat silently in his pushchair. I did try to sit Freddie on a baby swing but it’s not supportive enough so he went back in his chair.
Situations like this are really hard to deal with. Harder than anybody not in my situation could imagine. It’s an eye opener. Your taken out of your own little world and made to realise the extend of your child’s delays. It’s pretty heartbreaking.

While we were there the dreaded question was asked “So whats actually wrong with Freddie?” My response went something along the lines of…

“O well erm hes erm hes got this eerrmmmm… well it’s a undiagnosed syndrome that well eerrr it causes him to have, well it means that he has erm developmental delay and well erm hes got feeding issues, and er hes partially tube fed. Its just a… well it’s just a syndrome thats has no name. But hes fine…hes just fine.”
I then rapidly change the subject whilst being really annoyed with myself for not explaining it properly.

I don’t dread the question because I don’t want to discuss Freddie my problem is how do I explain it properly? Where do I even begin? Some may say it’s nobody elses business, but I feel that the more people I can explain Freddie to the more people who will gain an understanding of him and other children with special needs.

If I tried to explain Freddie properly it could be a bit lengthy…

“Well basically Freddie has a genetic syndrome. He was born with failure to thrive and low set ears, this is an indicator of organ problems, particularly the kidneys, which luckily for now seem fine. He also has dysmorphic features, including Micrognathia, Microcephaly, Trigonocephaly/metopic suture, which may require major surgery soon, adducted thumb, which too is going to require surgery, unusual toes & fingers, high arched pallete & a retro position epiglottis,  he also has a gastrostomy button that’s hes partially fed through & takes his 8 doses of medicines through, he has a plagiocephaly, an atrial heart defect, a stridor, a tracheal tug, astigmatism, long sightedness, Esotropia, severe reflux & milk protein intolerance, sleep apnea and has developed epilepsy, they are not entirely sure what type, he tends to jerk alot, has staring spells & has a few shaky moments through out the day, but it’s not categoric of any particular type of epilepsy.. I think that’s everything. O no wait he also has severe global developmental delay. Meaning he is behind with his development & has a low understanding of the world & what he is supposed to do. Hes not walking or talking or crawling or playing as he should. Hes been stuck at the 3-6month age range for about a year now. With alot of help from physios, occupational therapists & speech & language therapists we are hoping to eventually make steps forwards with him. I would like to be able to tell you the name for this syndrome. Unfortunately I can’t, theres no name. The doctors don’t know what it is, for now it’s a bit of a medical mystery. I hope this answered your question?”

To be honest i’m not sure theres ever going to an easy answer to such a question. I’ve been asked it alot before and I never find it any easier to answer. Like i’ve said it’s not that I don’t want to talk about Freddie but it’s not really the easiest thing to discuss. I’d never like anybody to think they can’t ask me about Freddie & I thank all the people who have asked for showing an interest but there really is no short, simple answer to that question.

Speech & language – Home visit 1/5

Published May 21, 2012 by swanfreddie

Today was our first home visit from our speech & language therapist. I wasn’t expecting much from them. We’ve had very little support from them, which I think is surprising seeing as Freddie has feeding issues & is very delayed in his speech. We are still relying alot on tube feeding & Freddie is still yet to babble & his understanding of language is very low.

I recently spoke to some friends about how i’m struggling to find ways of engaging with Freddie. Due to his delays he doesn’t play with toys as a 23 month old would, he doesn’t even play with toys like a baby would. He struggles with his lack of hand function which stops him picking up and playing with toys & with his understanding of the world being so low he seems to not understand what to do with toys. I was getting a bit desperate to find something to help Freddie learn & develop.

I was actually quite surprised at how well the session went & I found it very helpful.
The activity we were going to do is meant to be a group activity but as I am unable to get to any of the Speech & language support groups they have adapted the game just for Freddie to play at home.
It starts of with a little song to try & give Freddie a clue that we are about to start playing.

“Its time for us to play
Its time for us to play
Ee ii adeo
Its time for us to play”

We started off with a big, red box of toys. A bell, a few squishy, touchy, feely toys, 2 books, a little crab that vibrates when you pull the string, a spinning top, a fan, a pop up clown and a squishy ball. The speech & language therapist showed Freddie all the toys & tried to gain an understanding of what ones he liked & which he didn’t, not an easy job when he doesn’t speak.

5 toys were then placed into a bag & we started to play a game with Freddie. It started by singing a song. The song includes two Makaton signs, in time it would be nice to teach Freddie Makaton and allow it to be his way of communicating but for now it has been agreed that it’s too much for Freddie as his hand control wouldn’t allow him to do the signs. But him being able to see the signs may help him to realise what i’m saying to him.

“What is in the bag
What is in the bag
Lets take a look & see
What is in the bag”

The idea behind the game is that Freddie puts his hand into the bag & pulls a toy out & he gets to explore it. Due to Freddies limited hand function he wasn’t able to do this so instead we picked one out for him & let him have a feel of it. The aim is to try & get Freddie to communicate what he wants us to do with the toy. For example if he wants the spinning top to be spinned for him he needs to communicate that to us via eye contact, making a noise or hitting the toy. Then the song starts again & continues until all the toys have been looked at.

The next activity is a movement singing game such as row row row the boat or round & round the garden. The idea behind this game is to stop singing at a certain point & see if Freddie can preempt what is coming next. For example when doing round & round the garden once you have sang 1 step 2 step give a big pause before you do the tickle to allow Freddie to try & understand what is coming next.

The main aim of these games is to allows us to try & understand what Freddie wants & when he wants it. In the past i’ve always been able understand Freddies cries & give him what he needs but the older he gets the less & less I understand him. Picking up little clues from games like this could go along way in making  life easier for both me & Freddie. Understanding what a little bit of eye contact means or what that particular noise means could go along way in allowing us to communicate. It might not be the form of communication I want as a parent, it’s no “mummy I want this please” but it’s a different way of communicating, unique to Freddie.

Feelgood Friday

Published May 18, 2012 by swanfreddie

My Feelgood Friday this week feels a bit of a strange one. I really want to write about something amazing Freddie has done but we haven’t had a great week.

Freddie has just had a physio session, it went ok, not great but at the same time it wasn’t bad. Freddie is a very strong little boy and the physical problems we face with Freddie is getting him to realise what he is supposed to do.
We are working very hard with the physio to get Freddie to spend more time on his tummy but as Freddie prefers laying on his back it’s proving very difficult. We have tried everything we can possibly think of to get Freddie onto his tummy but he just wants to turn back over. But we will keep persisting with it until Freddie finally understands what we want from him & hopefully in  the future teach him to crawl.
We are also working on trying to get Freddie to stand with support. Again the hard part is getting Freddie to understand what we want him to do.

For now crawling and walking are along way off. I’ve mention to the physio & ot that i’m struggling with getting Freddie around the house. Hes very heavy and it isn’t doing my back any good by carrying him around all day. He has no danger awareness so he can’t be left in a room alone for long periods so where ever I go I carry Freddie with me. Freddie doesn’t like being held & is very wriggly so it’s very hard to safely carry him anywhere. We have a corner seat chair which was a great, safe place to strap him in when he was smaller but hes getting too big for it now & it’s very hard to lift him out of it without straining my back.

It was mention that we could maybe look into getting a Panda chair for Freddie and today physio agreed that there is definitely a big need for Freddie to have an indoor chair on wheels now.

When Freddie started sitting unaided I thought he would soon be crawling & walking but unfortunatly it’s not gone the way we expected. I would be lying if I said I wasn’t a little bit disappointed to have to need a chair like this but I know it’s for the best.

So this weeks Feelgood Friday is that my back will soon get a break, I will be able to start cooking proper meals knowing that Freddie is safely sat in a chair in the kitchen with me and we got the equipment we require without a fight or a fuss.

To me SWAN UK means…

Published May 9, 2012 by swanfreddie

…A heck of a lot actually. This blog post probably won’t do them any justice but they really are fantastic & I can’t thank everybody who is part of SWAN enough for everything they have done for me and my family.

Support
The nice thing about Swan is that there is always somebody around if you need them. Back in October last year I was worried about Freddies odd jerky movements. The first place I went was over to the Swan support group on facebook to see if anybody else had experience these. So many people responded to me and through their advice we ended up down the hospital with Freddie to get him checked out and we eventually got a diagnosis of epilepsy. Whilst at hospital I received constant messages off swan members checking how me & Freddie were and offering us tons of support.

Understanding
Having a child who is undiagnosed can be hard for other people to understand. I’ve had comments made to me in the past that Freddie will just catch up or that it can’t be serious if it doesn’t have a name. But neither of these are true and swan is a place where other people understand exactly what having an undiagnosed child will mean. They understand my fears and apprehensions for the future with Freddie and don’t judge me.

Highs
Most people won’t understand how much a small developmental step can mean to a swan parent. The future for Swan children is very uncertain. Without a diagnosis there’s no way of knowing if the child will sit, walk or talk. So when a Swan child does something like laying on their tummy for a few seconds or holding a toy in their hand for a few minutes we are all their to celebrate. Small things for most parents but HUGE for a parent of a special needs child. We celebrate every little step on Swan as we all know and understand how important and truely amazing they are.

Lows
Having a swan child brings alot of low points but with the swan support group there’s always someone to listen. Somebody to understand and offer advice. Theres plenty of tears but theres always someone to pick you up, dust you down and help you carry on again. Quite often a swan child will end up in hospital, with epilepsy, infections, eating problems, sickness bugs, with an type of problem everybody rallies round and there is always somebody there to offer any support that they need. To help them when they reach their lowest points.

Advice
The help and advice I have received from swan has been amazing. Filling out dla forms and sorting out respite can be a nightmare for any family but when the child is undiagnosed it becomes alot harder. But on Swan there is always somebody to help and advise and make the process a bit easier. Having children like Freddie with complex health needs there is a big need for specialist equipment, I asked on the facebook group a few weeks back if anybody could recommend an indoor chair that I could use with Freddie and within minutes I had a list of chairs that would be suitable. Without this advice I would have spent hours searching the internet for something suitable. There’s advice with what meds are best to use, where to get grants from, help finding suitable toys, genetic testing, anything you need somebody will have advice.

Somewhere to belong
Before I found swan I felt so lost and alone. There were support group for lots of syndromes but nowhere for a child who is undiagnosed. I felt like we were the only once going though it. But now I have somewhere to belong so I no longer have to feel isolated. People to laugh with and people to cry with.

Through Swan I have made some great friends, I haven’t met any of them but to me that doesn’t matter. They are people I think are fab and whose children you actually can’t help but care  about.
Without swan I wouldn’t be writing this blog, which I hope one day a parent who is in the situation I was in when Freddie was born might come across and I hope I might be able to help them. The blog is also a way for me to deal with my feelings. Sometimes writing every down can really help.

The past 23 months of my life have been incredible hard and I doubt it will get any easier any time soon, but at least I have a totally amazing support group full of fantastic people to help me through it as best they can and for that I am incredibly grateful.

Happy 1st Birthday Swan UK!

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