All posts for the month June, 2012

Speech & Language – Home Visit 4/6

Published June 29, 2012 by swanfreddie

This week was quite a short  session where we were expanding on the ‘What is in the bag’ game.

We sang the song as usual but instead of allowing Freddie to pick his own item out of the bag I picked 2 items out for him. I showed them both to him & held them in front of him in seperate hands to allow him to choose which toy he prefered. Freddie was very good at making a choice & everytime was able to show me which toy he wanted to play with.
The idea is to try & expand this in every life as well. Instead of just giving Freddie a toy to play with give him a choice “Would you prefer this toy Freddie or that toy?” When he is able to eat a more varied diet of solid foods it could be a choice between an apple or a banana or even with silly things like what socks would he like to wear out of this pair or that pair.

We also sang some more nursery rhymes to Freddie – Incy Wincy Spider & Hickory Dickory Dock.  But there was still no improvement with Freddies concentration levels during singing & no realisation that we were pausing during the song. But in time i’m sure it will come.

Next week it’s messy play!


Secret physio

Published June 27, 2012 by swanfreddie

Doing regular physio everyday can become a bit of a chore. So today we decided to do some secret physio. Something less structured and a bit more fun. We headed down to the park to use the swings.

Freddie much preferes the lay down swings, they make him giggle.

But as we are trying to work hard on his sitting up skills we thought a little practise on the sit up swing may help. He seems to have taken a step back slightly & is very wobbly when sitting but did very well sitting up at the park for a few minutes.

Speech & Language – Home Visit 3/6

Published June 25, 2012 by swanfreddie

This weeks session we focused on nursery rhymes.

The idea of the 1st activity is to pick a nursery rhyme & the same one is sang 3 times. The 1st & 2nd time it is sang in full all the way through but the 3rd time the song is stopped at certain points to see if Freddie will understand that the song has paused & be able to indicate that he wants the song to continue, by using eye contact or showing excitement or even frustration.

The therapist started with ‘twinkle twinkle little star.’ She had a little finger puppet of a star that was used to try and gain Freddie’s attention during the nursery rhyme. Doing this game with Freddie was a big struggle. He lacks the attention span needed to concentrate on the activity and he kept falling backwards from his sitting position.
We used other songs too, ‘baa baa black sheep’ and ‘row row row the boat.’ We found Freddie was able to concentrate more on the ‘row the boat’ song, possibly as it involves skin contact & movement for him. Hopefully the more this activity is done with Freddie the more familiar he will become with the songs and will help increase his attention span and concentration.
As we would need our own puppets to use with the rhymes I got Evie to help me make some. It was a really nice way to allow her to feel included in Freddies therapy.

Our next activity we were going to use a space blanket. It was folded up so it was big enough for two people to be able to hold. We placed the blanket on the floor by Freddie, with the speech therapist holding 2 corners and me holding the other 2. We raised the blanket in the air whilst saying “up, up, up, up” then we held the blanket in the air and waited to see if Freddie acknowledged it was there. After a few seconds he did glance up and whilst saying “down, down, down down” we bought the blanket back down. We repeated this a few times and one time Freddie even reached a hand up to try and pull the blanket down. The idea of this game is to try and teach Freddie the difference between up and down and encourage him in his own way to ask for the blanket to come down.

The plan until our next visit is to encourage Freddie to concentrate more on the activities. Also to try and encourage him to communicate what he wants with whatever method he finds easier – pulling the blanket down or glancing up to it.

National Carers Week – Getting the balance right

Published June 21, 2012 by swanfreddie

Being a carer to Freddie takes up alot of time. I have to see to his every needs. But at the same time I still need to be a mummy to Evie. Getting the balance right between the two roles is hard.
I did a post about a day in my life. You may notice it revloves around Freddie. Evie isn’t mentioned much in it despite the fact she is here with me all day too. I do try to give her as much of my time as I can but it’s not easy. Freddies care is so demanding and time consuming.

Lately Evie seems to be picking up more on the fact that theres one rule for Freddie & a different rule for her –
I feed Freddie – Evie has to feed herself
I carry Freddie everywhere in the house and to and from the car – Evie has to walk
I dry Freddie after a bath – Evie is encouraged to dry herself
I get Freddie dressed in the moring & in his pjs at night – Evie is encouraged to do these by herself
I brush Freddies teeth – Evie is encouraged to try and do her own
Freddie blows raspberries & spits alot – I discourage Evie from doing this unless shes doing it to play with Freddie
Freddie is allowed medicines throughout the day(for obvious reasons) – Despite constant requests for them Evie is not(unless poorly)
Freddie pulls hair and can get angry at time, it is discouraged but it’s not something he understands – If Evie pulls hair or gets angry in anyway then she would get told off
Freddie will wake up and cry during the night and will require attention from us – If Evie does this she is told to go back to sleep(unless there is a genuine reason)

Recently Evie has been showing some negative feelings towards Freddie, saying she wishes he lived somewhere else and she doesn’t like him. Shes 3 now and i’m sure she notices the difference more in the way things work in our house. They are not differences that I choose by choice. If Freddie was able, at the age of 2 I would also be encouraging him to dress himself and feed himself. It’s just unfortunate that we are not in the position to do this.

Having a carer as a mummy does mean Evie has to sacrifice alot. We don’t get much mummy and daughter time. It’s so hard to get the balance right between caring for Freddie and being a mummy to Evie. I try to please them both at the same time but it’s not easy. I will try and get Evie to play with puzzles one side of me and ill try and sit Freddie the other side and show him some toys. It never goes to plan. Freddie will keep falling over from his sitting position or will get bored or angry so he takes all my attention leaving Evie frustrated that i’m not helping her with her puzzles.
It is sad that despite them both being my children and me loving them equally Evie does have to come 2nd. Not by choice, but Freddie needs me more. I hope as Evie grows up she sees that I try my best to give her as much of my time as I can and the things I ask and expect of her are me having her best interests at heart. It may be different to what I expect from Freddie but this is me doing what is best for both of my children. 2 children, both with different needs.

National Carers Week – Fighting

Published June 20, 2012 by swanfreddie

One thing that I hear alot of carers of special needs children talk about is how much they have to fight to get their children what they need. I’ve heard some terrible stories of how hard carers have had to fight to get basic things for their children.
We have a bit of a fight on our hands at the minute. I’m finding it very draining & it’s taking up so much of my time trying to sort it.

I’ve spoken here a few months back about our new pushchair. Freddie was really struggling in his basic buggy & we were getting desperate for something with more support. The pushchair the wheelchair centre offered us was perfect, but within a week we started to notice that the frame wasn’t clicking into place properly & I think it was like this when we got it. I rang wheelchair services and they sent an engineer out to look at it. He seemed to think the pushchair had a twisted frame which was stopping one side of it from being secured into place. He arranged for it to be collected and be fixed. I asked if they would supply Freddie with a tempory pushchair while ours was gone so I could continue to safely and comfortably get Freddie around. Seemingly they only stock basic pushchairs so we were just left with Freddies old pushchair to use.
A week after our pushchair went I rang the wheelchair centre for an update. They said they were having problems sorting it because it was a brand new pushchair the manufacture wasn’t happy about it being returned to them. They said they would ring me back with an update. A few days later I had no call so I rang again. They said as yet they had no real news for me as they were still trying to sort it out with the manafacture. This continued for about 3 weeks, I ended up getting more and more stressed with them & was struggling more & more to transport Freddie. Eventually they told me it had been returned to the manufacturer to be looked at.
A few days later I got a phone call saying they could find nothing wrong with the pushchair and they weren’t even sure why it was there. I told them what the engineer had said about the twisted frame & they went to relook at it. Another week of me constantly pestering them past & finally they said they were redeliving it back to us and we agreed a date.
That date came & I promised my daughter as soon as the chair was delivered we would go to the park for a play. When the knock at the door came it didn’t go as expected. “I’ve come to collect your pushchair” he said! After 5 weeks and 3 days of not having Freddie’s pushchair I was FUMING that they had got everything mixed up & we were not going to be getting it back today. The poor man was as bewildered at me as to why he had been asked to collect instead of deliver. He assured me he would be back with our pushchair tomorrow. I was left to explain to Evie that we woudn’t be going to the park as the pushchair wasn’t coming today.
The next day the pushchair arrived but they had done nothing to it…it’s still broken! To say I was fuming doesn’t even cover it. I wanted to ring them & ask what on earth was going on but I knew if I spoke to anyone i’d just cry.

I’ve found the whole thing exhausting and draining. I shouldn’t have to fight this much to get my son the pushchair he needs. The fight is going to continue. The pushchair is being picked up again on Thursday to be looked at again. I want to ring them & demand they just replace it & I want to make a complain about it all. But right now I just don’t have the energy to do it. The whole thing has exhausted me.
I feel that everything is taken out of my hands. If I could go down to the shops & just buy Freddie a pushchair I would but we are not in that position.

Compared to the fights i’ve heard alot of other carers go through for their children this is minor. But it’s a fight that I shouldn’t have to do. My energy & attention should be going into helping Freddie not sorting things like this. We were lucky this time that we were just about able to carry on using our old pushchair, if this happens again in 6 months time I doubt we would and then what would we do? Be housebound for 5 weeks?

Being a carer really is a hard enough job without having added stress placed upon us. But I won’t give up on it, no matter how draining it is.

National Carers Week – A day in the life of

Published June 19, 2012 by swanfreddie

A typical day yesterday as Freddies carer-

Freddie wakes & I put a clean nappy & clean set of clothes on him .

Breakfast time. I make Freddie weetabix & Evie toast. Evie eats her breakfast while watching the tv, I have to feed Freddie as he isn’t able to self feed. Freddie can be hard to feed as he tends to spit & dribble his food alot.

I clean Freddie up after a very messy breakfast. Evie gets herself dressed while I prep Freddies first dose of medicines.

3 sets of medicines administered. Clobazam, Epilim & Domperidone. Along with this there is plenty of water to keep Freddie hydrated. I also check his dribble patch is still in place behind his ear & replace if  necessary. I also give his gastrostomy site a clean. Syringes are cleaned ready for his next dose.

I quickly get dressed. I either take Freddie with me or strap him in his chair so hes safe. He can’t be left alone for even a minute as he is very good at getting into trouble.

Time to start therapy. We start with our speech and language games.

Next we do some physio. A small amount of tummy time using our secret weapon, the ipad to encourage Freddie to lay on his tummy for as long as possible. He manages about 30 seconds.

I bring our box of sensory toys down and explore lots of different textures and encourage Freddie to use his hands to feel them.

Speech & language therapist arrives. She shows me some new games to play with Freddie and we work through ways of keeping Freddies attention. We try to include Evie in the games too and I learn some new makaton signs.

Lunch time for Freddie. I feed him half a jar of baby food, again fairly messy with the spitting & dribbling.

Nappy change and Freddie goes to bed for his afternoon nap.

I make me & Evie lunch. I then have jobs to do like washing up, washing & drying clothes & ironing. I also use this time if i have any phone calls I need to make to the hospitals or therapists or to chase up equipment.

I wake Freddie up & I try feed him a bottle of milk. Freddie struggles with fluids and is very easily distracted. After milk we have a nappy change.

I sit down with Freddie & we have a play on his ipad. I use this to try & increase his concentration levels & to encourage his to use his hands.

Freddie gets tired after too much unsupported sitting, he starts falling over & his spine bends so I sit him in his corner chair with some toys while I go and wash his bottles up and make a new batch of milk.

I try and do a bit more physio with Freddie. I encourage him to go on his tummy again and help him to get into a crawling position.

I prep Freddie another half jar of baby food ready for his tea and start cooking Evie a meal.  I spoon feed Freddie while Evie feeds herself. I then leave Freddie in his highchair while I prep his evening meds & get the pots washed up.

I administer Freddie 3 more meds, movicol, domperidone and omeprazole. I also give him another load of fluids. Syringes are washed ready for the night time meds.

I give Freddie a wipe down with a clean flannel and clean his gastrostomy site. I put some e45 cream on him & I then get his pjs on while Evie gets hers on. We spend the next hour winding down ready for bed, sometimes with sensory lights & toys or sometimes we look at Freddies ipad.

I brush Freddies teeth & change his nappy ready for bed.

Freddie is put in his bed & I then read Evie a story before she goes to bed.

I spend the next 2 hours going up and down the stairs as Freddie won’t settle. He screams and screams until he sees my face and then will stop & just smile. He struggles with going to sleep despite clearly being tired. I do him another nappy change in this time and eventually he goes to sleep.
During the evening i prep Freddies night feed & get his pump ready. Freddie is hooked up to the feeding pump to up his calories for the day and also has 2 more meds doses, Eplim & Clobazam and he has another nappy change. There’s some crying overnight but nothing too bad.

The above doesn’t include fitting in seeing Freddie’s 18 doctors and other therapists. It doesn’t include changing the water in his mickey button, it doesn’t include household jobs like going shopping or trying to hoover and keep the house clean. It doesn’t do justice to how much effort goes into doing Freddies physio or other therapy. It doesn’t include sorting out prescriptions or taking delivery of medical items. It doesn’t mention that when I change a nappy I have to fight Freddie to stay still as he has no idea what i’m trying to do to him. It doesn’t include the sick I clean during the day & night from his reflux, and when his nappy leaks over night. It doesn’t include the carrying around of Freddie that I do or trying to bath him.  It doesn’t include trying to spend time with Evie while keeping Freddie entertained at the same time. It doesn’t include the fact I have to try & squeeze in driving lessons & have a wedding to finish planning in 4 weeks times.

Some people may read the above and think so what? I do this with my children too. But the big difference is your child will grow up. They will go on to feed themselves, to dress themselves and use a toilet. The will become able enough to look after themselves. It is very unlikely Freddie ever will. He will need a carer his whole life.

This is what I do for my 34p an hour. If I didn’t chose to care for Freddie he would cost alot of money for someone else to be paid to care for him. I read that it can cost up to 3 times as much to raise a disabled child. But with a disabled child many of the mothers/fathers leave work to become a full time carer & therefore earn only their 34p an hours and not a full time job workers wage. No wonder they say 4 in 10 disabled children live in poverty.

National Carers Week

Published June 18, 2012 by swanfreddie

Today is the start of national carers weeks. Very few people will ever chose to become a carer it is something that just happens
It was mentioned to me when Freddie was still quite small that I could possibly claim disability living allowance(DLA) & carers allowance(CA) for him. I wasn’t convinced. Despite Freddie needing alot more care than what Evie did as a baby I still didn’t think it made me a carer.  I decided to apply for it anyway but wasn’t hopeful. The forms were very hard. Not just for the workload they require but they are also emotionally draining as it requires you to write everything about your child & their needs. Everything they can’t do.
A few weeks later we were awarded DLA & CA. I must admit I felt a bit like a fraud. Why should I be paid to be a mum? It just didn’t feel right. I think it was a bit of denial. I was convinced Freddie wasn’t disabled, despite all the meds & tube feeding & endless hospital trips. Whenever I was asked by people what I did for a living I would always respond with “oh, i’m just a stay at home mum”
The older Freddie has got the the more I have accepted that yes I am his carer. He needs me for everything. He needs 8 meds daily, he has no self help skills – feeding, dressing, toileting, he is still yet to crawl or walk so needs to be carried everywhere, he needs help with play, with therapy, with keeping safe, the list is endless. I have become his eyes, his ears, his legs & his arms.
Being a carer is a full time job but it is paid very poorly. £58 a week, £8.28 a day which works out to be about 34.5p an hour. Freddies respite is due to start soon, his carer will be paid over £10 an hour, which in my opinion is a fair wage for someone to care for my son. His needs are complex & hes hard going. I wouldn’t expect anyone to work for 34p an hour but people in my position have no choice. We can’t refuse to work due to poor pay & little time off, we have no choice.
While I still see myself as a mummy, my job is a carer. I hope this week by doing daily posts on what it’s like to be a carer it may help people understand a bit more about what people like me do for our 34p an hour.