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All posts for the month April, 2012

Celebrate

Published April 29, 2012 by swanfreddie

When you become a parent to a child like Freddie you have to change your outlook on things.
My son makes his own rules. He doesn’t follow the milestones that are expected of him. The emails I get from baby websites instantly get deleted, They are not worth reading because clearly Freddie won’t be doing what he should.
But you you have 2 choices really. Sit and cry and be depressed over the whole situation(which sometime I do but try very hard to stay positive) or you stand back and look at things differently. Look at the bigger picture. Find the things to celebrate. Sometimes you do really have to look hard but they are there.

When Freddie was a tiny baby I used to do tummy time with him. He just used to lay there and chill. I suppose like any baby would do.
But as he got older he tolerated it less and less. Freddie struggled to lift his head & couldn’t breath very well in that position. I don’t think the reflux & the gastrostomy helped much either. But with help from the physio, we are now getting pretty confident on our tummy. Freddies managing a good 10 seconds there now and he is even lifting his head enough to be able to have a little look around.


That to me is a huge step for Freddie! Definitely worth celebrating!

This post is part of the Celebrate Blogging Challenge over on trickycustomers blog. Do pop over & join in.

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My not so stereotypically perfect family

Published April 28, 2012 by swanfreddie

I’m sure i’m not the only person who before having children had images in their head of being the perfect family? For obvious reasons this didn’t quite go to plan. But in all honesty I doubt it does for anybody.

This was going to be me. Making cakes while my husband went out to work. My children dressed in lovely smart clothes. Having proper homecooked family meals every evening & a toast rack on the table every morning. Seriously i’m not even close to this.

I’ve not had a proper homecooked meal for a long time. I have no time for such things. Most mornings I replace breakfast with a cup of tea. Seeing as my washing & ironing piles are so out of control my children tend not wear smart clothes, just whatever is left at the bottom of their drawers. I don’t bake cakes, unless it’s a special occasion. The last cake I baked was for Evies birthday, I had to wait till the children were in bed so I had some spare time to fit it in whilst juggling preparing night feeds & meds.
I had images of us having fun days out or we would stay home doing fun activities. Obviously I expected a couple of squabbles between them but then they would kiss & make up & go to playing nicely together.  We don’t do many fun days or activities. Firstly because theres not time & secondly because finding an activity or day out to suit both Evie & Freddie is near impossible. If we are not doing meds, physio or his feeding routine Freddies normally in bed sleeping & I can be found flopped on the sofa recovering from the mayhem.
This morning we were a far cry from this ideology of perfection. I was  rudely awoken this morning to Freddie screaming. I tried to ignore him for a few minutes in the hope he would go back to sleep…he never. So I got him up…which then woke Evie & we all ended up downstairs. I fed Freddie whilst drinking my tea, Evie fed herself & Andy sat on his phone while eating his breakfast. Next I raided the childrens wardrobes for clothes…infact I went to the trampoline in the playroom for Freddies clothes as his wardrobe still has been put together so his clothes are messily shoved piled neatly on there. I dressed Freddie & after a bit of a battle Evie finally dressed herself. Andy had a shower while I minded Freddie. I had a shower while Andy minded Freddie. We then decided to go for a walk. But our lovely new pushchair decided to be a total pain. The footrest got stuck so the pushchair wouldn’t fully open. We eventually sorted that, but then the straps weren’t right, so we sorted that & then the seat cushion wasn’t right, so we sorted that then the pushchair frame wasn’t right….seriously I could of screamed and kicked it. But we finally got on our walk with the dog in tow, infact I lie, with the dog dragging me along the street.
When we got back I realised just how much of a tip the house was. Anybody who is on my facebook may have seen the picture of what happened to my curtains last night. Anybody who didn’t Evie thought it would be a good idea to swing like tarzan on my living room curtains…She pulled them off the wall. The whole bracket fell down… We tried to fix it last night but we just gave up & left them on the floor. Paperwork is slowly taking over my living room, pjs from this morning were still on the floor, the dog had his blankets everywhere, Evie had toys everywhere, dishes were piled up in the kitchen, left over takeaway boxes covered the worktops, the floors needed hooving…I’ll leave it there, you get the idea.
But anyway that’s us. We may not be stereotypically perfect but is anyone? (If your are please don’t reply, i’d much rather live with the assumption that everybody lives in a total manic, messy, unorganised house)

Feelgood Friday

Published April 27, 2012 by swanfreddie

On Fridays I love nothing more than waking up & reading all the Feelgood Friday posts on the swan uk facebook group. It’s a chance to share something positive/happy/exciting that is happening in our lives. A chance to focus on the positives as sometimes having a disabled child it can be easy to focus on the negative stuff & overlook all the good things that are actually happening.

This week my Feelgood Friday post is about our appointments we had this week. We had 4 –
Community Paed
Wheelchair Centre
Past(Paediatric assessment & support team) meeting
Social worker meeting

They all had good outcomes. I’ve spoken about our new Alvema ito pushchair enough this week so I won’t waffle on about it anymore but & you can read about it here if your interested.

The past meeting was the first time we have got a group of Freddie doctors & therapists together. It was a chance for everybody to know exactly where we are up to & what the plans for the immediate future are. It started with our consultant paed talking about Freddie’s background. The poor man had a lot to read! The list seemed to go on for forever! It’s never nice to hear the problems but for us it was really important that the new people who are involved with Freddie are aware of exactly what is going on. And in fact I even learnt some new stuff(possible heart op in future?!?!?)
I thought the past meeting would be the perfect time to mention the struggles we are having at home with Freddie. His corner seat is no longer suitable. Even when strapped in he manages to lie flat on the floor! I’ve been saying for a few months now that really I need something with wheels. Carrying a 23 month old all over the house isn’t great for the back. I need somewhere safe for him as he can be a big danger to himself. So we are being fitted for a r82 panda chair soon! Which will be fab. I may even be able to cook a decent meal while Freddie is sat safely in his chair in the kitchen with me! We also discussed getting started on statementing Freddie ready for starting his special needs school.
The social worker meeting went equally well. We read through our core assessment & she is proposing that we can have 5 hrs a week respite with a sn childminder. It just needs to go to panel & it  then it will hopefully be agreed.

So that’s my Feelgood Friday for this week. Normally I come out of appointments feeling confused/angry/frustrated/stressed/annoyed but this week they all went pretty well.

Wheelchair Centre

Published April 26, 2012 by swanfreddie

A year ago Freddies Occupational Therapist mentioned that when Freddie turned 2 he would be eligible for a new pushchair. (not sure why we had to wait for long as he would of benefited from one before he turned 2) I remember saying to my partner that we would never need a special need pushchair. In a years time surely he would be walking & not need a pushchair still!
But it turns out we did need a pushchair. When we spoke to Freddies occupational therapist last year the pushchair in mind was a Maclaren  Major.

But in the last few months it was becoming more & more apparent that this pushchair wasn’t going to be suitable.
Freddie was currently using a very basic buggy. It was something we bought when Freddie turned 1 to just use for a couple of months until Freddie started walking. Freddie has got to the stage where he hangs out of the pushchair & I have to walk along with it tipped back on it’s back wheels to keep him sitting back in the seat properly. We were also struggling with the fact Freddie still needs an afternoon nap & he would very rarely sleep in his buggy as it had no recline to it so we always had to make sure we were back in the house for 12pm for Freddie to nap. He has pretty long naps, up to 4 hours so we were finding it quite hard to do anything as alot of our day was spent waiting for Freddie to wake up.
We spoke to Freddie’s occupational Therapist about our problems with his buggy & she agreed that he was in need of something with alot more support & comfort. The other option was an Ormesa Bug.
Anyway the appointment date finally came. Our therapist couldn’t make it to the appointment with us so I was a bit nervous that whoever saw Freddie wouldn’t fully understand the problems we were having. But infact she was lovely & instantly dismissed the Maclaren & as they didn’t have any Ormesa bugs in he building for Freddie to test we instead tried out an Alvema ito.
I knew as soon I saw the chair that it would be perfect. But I must admit when Freddie was placed in it I could of easily cried. I just wanted to pick Freddie up & leave the room. I wanted to tell them that our old pushchair would be fine. I knew it wasn’t & this was a silly thought but had it seriously come to this?
Anyway I didn’t do a runner & we carried on, we adjusted it all to fit Freddie & I gave it a little push…It was FAB! It glided along the floor and even tho the chair was heavier than Freddie it felt so light! The wheels went where I wanted them to go & Freddie didn’t slouch or lean over the side…infact he looked so comfortable.
Luckily the pushchair was available for us to take home that same day!  So off we went to take our new pushchair home…infact we weren’t going home, we had to head straight off to our 2nd appointment of the day. A past(paediatric assessment & support team) meeting. We ended up being 15 mintues late & totally soaking wet when we arrived. Not ideal when theres a room of 8 health proffesionals all gathered around a table waiting for you!
So after the meeting we took the chair out for a spin. It was a bit strange. I walked past a shop with a mirrored window. I saw my reflection & it was one of them moments where things sort of dawn on you a bit. I wasn’t just pushing a pushchair anymore, it was obviously a special needs chair.
This might sound a bit ott but I generally think this chair will change our lifes. No more rushing home to put Freddie to bed(if he behaves & decides to sleep in his chair) no more uncomfortable, slouching Freddie & no more sore back for me from pushing a rubbish pushchair. I almost feel like I have a bit of freedom back.

Before

After

Grief

Published April 23, 2012 by swanfreddie

I’ve been wanting to write a post for a long time but it’s quite a hard subject  & something that i think I am worried that a lot of people probably won’t understand. It’s quite a hard subject to talk about but something that i’ve heard being discussed in the special needs community before.

What I want to blog about is grief. Grief is a natural response to loss. It’s the emotional suffering you feel when something or someone you love is taken away.

Some people may be thinking why I would have anything to grieve over? My son is still alive? Which yes, he is & for this I am extremely grateful! But there will always be a part of me that will feel grief for the child I never had…

I fell pregnant with Freddie when my daughter Evie was 5 months old. Me & my partner were over the moon. At our 20 week scan we found out we were having a boy! It seemed perfect. One of each. I spent ages buying things to give my unborn son the perfect boyish bedroom. We went for a dinosaur theme. Dinosaurs everywhere, a proper little boys bedroom. I then started buying lots of gorgeous boys clothes. Then I did what I suppose any parent would do & imagine what sort of things my son would do & what he would be like. I’d go & watch him play football and then of course he would go on to be a top football player. He would love playing with toy cars & dinosaurs & would get up to all sorts of mischief. I would sit & look at all the toys I could buy for him & I would sit and stroke my ever growing bump falling more & more in love with my son, who was already named as Freddie before he was born, everyday. I was just generally excited to experience what having a little boy would be like.

So when Freddie was born on the 1st June 2010 our lives were turned up side down a bit. Not massively at first though. He had a suspected genetic syndrome but I must admit I didn’t really believe them. It’s the sort of thing you hear happening to other people but would never happen to me. But unfortunately the doctors were right.

For his 1st birthday I wanted to buy him a big toy garage & lots of cars but Freddie couldn’t sit up or hold toys in his hands so it seemed a bit pointless. So I thought i’d save buying that until Christmas, but Christmas came it it was becoming more & more obvious that a toy garage just wasn’t for Freddie.
As time went by Freddie developed more and more problems . And the boy I used to imagine when I was pregnant I would seemingly never meet.

Freddie has severe learning difficulties. He doesn’t meet his milestones and even tho hes coming up to 2 years old hes still very much functioning at a 3-6month age. It is very likely that Freddie will spent his life in nappies, when hes older he will probably never be able to leave the house alone, it is possible he will spend his life non verbal & may never walk. This is a far cry from the mischievous, football playing, car loving boy I thought i’d have.

The little boy I thought i’d have wouldn’t need 8 doses of medicine throughout the day or have feeding problems, he wouldn’t see countless doctors, he wouldn’t need a physiotherapist to come to the house to try & encourage him to do things like roll onto his tummy or sit up & he wouldn’t need an occupational therapist to come out to help provide us with specialist equipment to help us care for him.
Back in summer last year it was mentioned that when Freddie turned 2 he would be able to get a specialist pushchair if he wasn’t walking, I never imagined for one minute he would actually need it, of course he would walk by 2! But on Wednesday we are going to be fitted for one, as Freddie can’t even stand without support let alone walk. Freddie needs constant supervision to stop him hurting himself as his sense of danger is so low. He needs encouragement with the most basic things like playing with toys or sitting up. As Freddie’s understanding is so low he struggles with things such as laughing & isn’t able to give kisses or cuddles.

The thing with grief is that it in’t just about the death of somebody. There are two different categories, first being physical or symbolic. Physical loss is more easily recognisable because it means that  it is tangible and it is something that you can touch, like losing your spose through death. Other types of loss are abstract and cannot be touched – they are aspects of a person’s social interactions.

We have been offered counseling in the past for Freddie, which we have declined but this feeling of grief does stay with me. That doesn’t mean I don’t totally adore Freddie & I would do anything for him but there will alway be a little piece of me that will think back to the little boy I imagined i’d have when i was pregnant.  I look at Freddie sometimes & I do wonder what he would be like if he did have a syndrome. Would he be funny or mischievous? Would he be a mummys boy or prefer his dad? Would he play nicely with Evie or would he prefer playing alone? Would he love to kick a ball and play outside?