I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).
Jeremiah has Autism.
Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.
Malachi has hypermobility and wears piedro boots to support his ankles
Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay
Zechariah was born with sepsis and has mild development delay.
Wednesday, 19 December 2012
Me: Ok, any reason why.
Jeremiah: (sigh) because bears go to sleep in winter.
Why did I ever think he would get less cute as he gets older?
Wednesday, 28 November 2012
Children in need day came around again and we went to ASDA after school as usual so that Jeremiah could hug the man dressed up in a pudsey suit. Isaac wasn't too keen though which led to the following conversation:
Isaac: I could be on children in need
Jeremiah: No you couldn't
Isaac: Yes I could, I've got a wheelchair
Jeremiah: Yes, but you're scared of Pudsey
I think Jeremiah had a point!
Yesterday Isaac, Malachi and I had our flu jabs. Isaac went first as usual. It was the usual trauma of me picking him up and the nurse jabbing him ASAP. Not very dignified but better than being in hospital with flu (again). Oddly enough it was Malachi who calmed him down by not making a sound when he had his done, taking us all by surprise and stopping Isaac in his tracks. Then I had mine and off we went to buy cake as is tradition after an appointment where needles are involved.
Wednesday, 7 November 2012
Malachi's physio appointment was this morning. He's doing well and getting close to walking. He can walk pushing along Isaac's toy fire engine for a few steps but he prefers to sit on it. I asked about getting him a kaye walker but he is too short for one.
The physio said that Isaac is showing signs of arthritis so he needs a blood test for that when we see Nicola next month. I knew he was likely to get it earlier than normal because of his hypermobility but I didn't think it would be this early. In the meantime I'm trying not to panic (easier said than done).
Tuesday, 6 November 2012
So now Jeremiah and Isaac are back at school. Parents evening tonight, physio with Malachi tomorrow. Only 7 weeks until the Christmas holidays and yes I am counting!
Wednesday, 31 October 2012
Wednesday, 24 October 2012
In the meantime we found out that breakfast club is only 70p per day so now Simon is taking Jeremiah to that every morning and I am taking Isaac on the days he is in and collecting both of them. So now one of my children is always on time for school. Isaac now has ear defenders for school to try and block out some of the noise. He took them to school for the first time today so hopefully he will have a better morning than he has done.
Isaac was in the local paper this week. A photographer went round to all the reception classes in Somerset and took a photo. So here it is, 15 happy smiling children, and Isaac in a strop.
And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment
15th October marked the end of baby loss awareness week and as is tradition we lit Eleanor's candle at 7pm for the international wave of light. I dithered about whether to light 2 candles this year but I couldn't find one or think of an idea to make one that felt right for Elisha so we just lit the one that we usually light.
Isaac finally told me why he didn't like school. Apparantly it's too noisy so he is now the proud owner of some ear defenders. So now he is happy although the teacher is having trouble getting him to take them off when she wants to talk to him. And he is even more unwilling to play with the other children in his class. According to him, Jeremiah is his best friend and he doesn't need anyone else. Not sure what Jeremiah thinks about that!
Malachi is at that in between stage, more toddler than baby now and cruising round the furniture. He has a cold so he is back on his inhaler again. He has also learnt to take apart disposable nappies so he is back in cloth nappies for the forseeable future. He doesn't really have the right shape for cloth nappies as he is very short and rather chubby so finding nappies that fit under his trousers is a challenge. His 9-12 month trousers are a bit long anyway so we can't get away with moving up a size to accomodate his nappy.
Tuesday, 9 October 2012
No, we can't help you, phone this number, phone that number, then phone another number. No, we don't have any record of you applying before. At his age he should be able to walk 2 miles to school and you are only 1.5 miles away. Well, you could try filling in this long form and submit medical evidence why you need school transport but I doubt you'll get it, he's not disabled enough. Or you could try phoning yet another number tomorrow. He's a wheelchair user, how can he not qualify for school transport. Bangs head against the wall.
Monday, 8 October 2012
In other news, the road is being resurfaced. Which for us means more delays with the buses. We were late for school again this morning and I was nearly late picking Jeremiah up. I am seriously considering learning to drive as I'm so fed up with being late all the time because of the buses. Also when Isaac turns 5 I will be spending £68 a week on bus fares.
Tomorrow I will be having the day off. Dropping Jeremiah off at school and then coming home and catching up with various jobs until it's time to pick him up again.
Tuesday, 2 October 2012
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Like many other parents of children with special needs I think it's a nice story when told by someone else who has also ended up in Holland but incredibly insensitive when written on a postcard from Italy. There are a few songs, stories and poems like this around, some of which I like and some of which I don't.
I really don't like the ones that paint an unrealistic picture of children with special needs. Children who have physical disabilities are mostly like any other child except they have certain limitations. Isaac isn't a saint like being who smiles at old ladies and generally looks ill. He is determined and fiesty. He says "mummy, can I have ....?" at various things while going round the shops. In many ways he is like any other 4 year old.
Of course in many other ways he is different from other 4 year olds and we have really been feeling it since he started school. He is doing 3 mornings at school this week and already he is struggling and it's only Tuesday. He's not settling very well either but that could be partly to do with his part time hours.
Saturday, 22 September 2012
When I pick up Isaac at 1:00 I have the opportunity to be a fly on the wall at playtime. Jeremiah seems to spend a lot of time running round in circles and Isaac seems to spend a lot of time sat on the playground wall being hugged by at least one of the older girls.
Nothing else to report apart from that Malachi has a cold which has upset his reflux. So I'm spending most mornings washing bedding and scrubbing the cot.
Monday, 17 September 2012
Malachi has got a cold and he is really wheezy again. He isn't as bad as last time, probably because I started him on his inhaler as soon as the wheezing started rather than dithering and then waiting for a GP appointment. I think he will probably get an asthma diagnosis at some point. Partly because Ehlers Danlos Syndrome affects his core muscles and partly because Simon and I both have it.
Isaac will be going to school 9-1 this week and next week. Hopefully he will manage the extra hour ok. He has been very tired but he is determined to walk as much as possible. We take the wheelchair with us everywhere just in case and on most journeys he will get in for a rest at some point.
Wednesday, 12 September 2012
This week has been busy. Yesterday Isaac went into school without crying for the first time. Malachi and I went to the toddler group at the sports centre where we ended up seeing Simon's cousin's wife and her little girls which was a nice surprise. I got to have squishy newborn cuddles and then she needed feeding so I ended up playing with Evie and Malachi on the bouncy castle. Somehow in the last 20 years I have lost the ability to stay upright on those things!
Then it was a quick dash across town to pick up Isaac from school, home, lunch, pick Jeremiah up, cook tea and put the children to bed. Today is my housework day so I've been trying to fight the tiredness and get some jobs done. Isaac is also fighting tiredness and is now in a "high as a kite" mood. School again tomorrow.
Saturday, 8 September 2012
And now it's the weekend and I have mostly been doing housework and recharging my batteries ready for another busy week. I have been struggling with carrying Malachi while pushing Isaac in his wheelchair. The ergo is a lot better than anything else I've tried but however I do it a 19 month old is heavy. I've managed to get him on my back once and that was better but I haven't been able to do that since. Malachi likes to fling himself backwards at the crucial moment which makes me nervous. I have discovered a babywearing group fairly near us so I will try and get to the next meeting.
Tuesday, 4 September 2012
On our way out Jeremiah noticed a sign about a party and free cake. It was the hospital's 70th birthday and there were lots of 1940's themed stuff going on. A journalist came and interviewed Isaac and Jeremiah and took photos. http://www.tauntonpeople.co.uk/Musgrove-Park-Hospital-throws-40s-themed-birthday/story-16813667-detail/story.html - this is the story. http://www.tauntonpeople.co.uk/pictures/Musgrove-Park-Hospital-Taunton-70th-birthday-bash/pictures-16813628-detail/pictures.html - these are the pictures.
Maddy's campaign has spread further. She won the Pride of Australia award and appeared on television as well. http://au.news.yahoo.com/today-tonight/health/article/-/14753623/maddisons-disease. She asks that everyone google Ehlers Danlos syndrome and read about it for 5 minutes.
Today both the big boys went to school. Malachi and I were nearly late, thanks to the bus, but we got there on time. Jeremiah went in without a backward glance and Isaac had to be prized off my leg. He had a good day though, he is absolutely shattered now. Pictures tomorrow hopefully.
Sunday, 2 September 2012
Tomorrow we will be going to the hospital to pick up Isaac's piedro boots and hopefully something to support his feet in PE. The name labels have arrived and I just need to iron them into their uniforms. We are ready for school to begin although I know I would rather have more holiday.
However the school is not ready for Isaac. The grab rails haven't been put in, the steps haven't arrived, the toilet seat isn't here and nor is the step for the toilet seat. His chair assessment hasn't been done and they haven't applied for extra funding yet. The adaptations will be sorted by the end of the week, I have been told and in the meantime the class TA will be taking Isaac to the toilet, holding his hand when he goes up and down steps and trying to avoid him being squashed. And I am repeating to myself that he will only be going to school for 6 hours a week and trying not to panic.
Wednesday, 29 August 2012
Please like her page, share it on your facebook/blog and help raise awareness of Ehlers Danlos Syndrome
Thursday, 23 August 2012
Sunday, 19 August 2012
Yesterday Simon, his dad, Jeremiah and Isaac went on a 6 mile hike. Simon spent most of the time trying to get the wheelchair through the mud and I had to clean the wheelchair afterwards but I'm glad Isaac was able to be included. Today on the radio they were talking about the paralympics and someone mentioned wheelchair rugby so I think I got off lightly. I wouldn't want to clean a rugby players wheelchair!
Monday, 13 August 2012
Not sure where the pink stripe came from. And the jubilee building under construction.
The orthotist managed to sort Isaac out at the same time which was nice. He now has some black piedro boots on order with velcro fastenings (I never knew they did them with velcro fastenings) and he thinks inserts to be worn inside his plimsolls/daps will be what he needs for PE but he needs to check his notes first. All in all a very successful appointment.
Sunday, 12 August 2012
Friday, 10 August 2012
They looked so funny, Jeremiah driving like a racing driver and Isaac sat calmly reading a magazine!
Thursday, 9 August 2012
Wednesday, 8 August 2012
Isaac was still tired from his holiday 2 weeks ago and he was reluctant to show the dr his walking skills. But I managed to persuade him to get off the examination couch where he was trying to fall asleep and walk around the room. The dr agreed with me and the GP about his ankles being too unstable for him to wear plimsoles/daps for PE at school and so he needs to see the orthotist to sort out something. We already have an appointment with the orthotist on 3rd september to measure his feet for new piedro boots so we are going to have the PE shoes appointment then as well. We came out 10 mins before our appointment time so after a quick detour to the hospital shop for the older two to choose some sweets we came home. We were only gone for an hour and a half which has to be a new record.
Saturday, 4 August 2012
Malachi loves it and he feels so much lighter in it than he did in the 2nd hand mothercare one. I think it will be more comfortable with him on my back but I'm not brave enough to try that yet.
Thursday, 2 August 2012
We got Malachi weighed and measured at the childrens centre (8.77kg, 73cm). He'd lost a tiny bit of weight and his length had slowed down a bit but as he'd eaten quite a lot just before the last weigh in and hadn't this time I wasn't worried. He is now following the 2nd centile for weight and is 2.5cm below the 0.4th centile for height. Nicola and the dietician are still convinced that if he puts on loads of weight he will catch up in length but so far that hasn't happened. But as he is no longer failure to thrive the various professionals aren't panicking about his weight so we will carry on with the small amount of infatrini he is on and keep weighing him every month.
While we were in the childrens centre the builders at the school next door set off the smoke alarm so we all had to troop outside to the park and wait to be let back in. Isaac in particular wasn't impressed until the fire engine turned up!
On the walk back into town one of the front wheels of Isaac's wheelchair fell off going up a kerb and Jeremiah ran over a piece of glass and a thorn with the buggy which proved to much for the slime filled inner tubes. I managed to get the wheelchair wheel back on. It's the 2nd time it's happened so I knew what to do but I'll be phoning the engineers today to get them to come and have a look as it's not very safe and if the bolts fell down a drain when the wheel flys off another time we could end up stranded. We were only a little way from the bike shop by this point so I pushed the buggy while Jeremiah pushed the wheelchair, trailing slime as we went.
So it was an eventful trip out but we did end up meeting 4 friends which was nice. Getting out and about is hard with all 3 of them and the wheelchair etc but I'm glad we did it. Internet shopping is all very well but I think we all needed a change of scene and to talk with different people. We're off to the hospital on Tuesday which will be a good opportunity for Isaac to practice self propelling on the shiny floors.
Friday, 27 July 2012
Since I posted Maddison's letter on my blog I have thought about the things she wrote about the lack of awareness of Ehlers Danlos Syndrome. I know I had never heard of it until Isaac was diagnosed with hypermobility and I did some googling. If you look hard enough there is a lot of information and online support groups out there but you do have to look for it.
Somewhere between 1 in 5000 and 1 in 10,000 people have Ehlers Danlos Syndrome. This makes it rarer than Downs Syndrome (1 in 800), Autism (1 in 100) and Cerebral Palsy (1 in 278). It is only slightly rarer than Spina Bifida (7 in 10,000) which I was quite surprised at as I think Spina Bifida is a lot more well known than Ehlers Danlos Syndrome.
When people ask me what's "wrong" with Isaac (and we get this more often now he has his wheelchair) and I explain about Ehlers Danlos Syndrome I normally get the "I've never heard of that before" response. If I say that the main symptom is hypermobility a lot more people know what that is also most people's experience of this is being able to bend their little fingers and thumbs backwards. It's not much but it's a start.
Thursday, 26 July 2012
On Tuesday, Malachi and I took advantage of there only being the 2 of us and we went to one of the toddler groups that is still open in the school holidays. It was a bit more expensive than the other toddler groups we go to (£3.10 per child) but it was good value for money as they had a huge bouncy castle, various craft activities, ride on toys, cars etc. Malachi loved it.
Today all 3 boys spent ages in the paddling pool. The weather has been so lovely this week. Photos to follow when I can get them off my phone.
Monday, 23 July 2012
Saturday, 21 July 2012
Malachi was very interested in the water although when he got in he decided he didn't like it. Isaac wasn't keen at first but when he finally got in he loved it. Jeremiah loved the water as usual.
Friday, 20 July 2012
No school runs for six weeks! I've got a few things planned for the holidays, including various craft activities and trips to the park.
Wednesday, 18 July 2012
My name is Maddison Parker, I am 9 years old and I have Ehlers Danlos Syndrome. I am wanting the world to understand Ehlers Danlos Syndrome so am sending this email out. I have some questions for you all! I would like to know why no one cares about Ehlers Danlos Syndrome? May was Ehlers Danlos Awareness Month and no-one really cared because I didnt hear anything about it anywhere! My grandma even sent a letter to A current Affair telling them it was the awareness month and again, nothing happened, they didnt even reply!!
A week in my life is full of pain. I'm constantly heating up my heat pack, and needing pain medicine. At school i cant finish my school work because Im in so much pain and all my joints dislocate. In case you dont know Ehlers Danlos syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I cant play with all my friends because when I run around my joints pop out and it hurts and I get really tired. It doesnt just make my joints pop out but it effects my balance, my eyes, my heart, tummy, skin and even my blood. It is a really painful thing to have. It's not fair!
Im in and out of hospital and my wheelchair. I dislocate my joints every day and have pain all day every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.
Im sick and tired of everyone saying there is nothing wrong with me because I look fine and that its all in my head. For lots of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the childrens hospital and the sunshine hospital. Even some of the doctors say "You again!" So I want to know WHY arent you trying to raise money to help cure my Ehlers Danlos Syndrome???? The doctors dont know much about it and cant really help me.
If I could change one thing about the world it would be the way people understand Ehlers Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don't I matter??
From Maddison Parker
Monday, 16 July 2012
However Isaac absolutely loves it which makes all of it worthwhile. In the buggy he was almost always in a sulk or a strop but in the wheelchair he talks to everyone. Jeremiah's teaching assistant got a shock this morning at school when Isaac started talking to her. Malachi is also enjoying having a better view.
Wednesday, 11 July 2012
Today has been one of those days. It started with Isaac not wanting to wake up which meant I had to dress him. He has fallen off the toilet today and generally been unsteady on his feet. So today I've been trying to do bits of housework in between helping Isaac with everything. Of course Malachi wasn’t keen on Isaac having all the attention so he was shouting as well. Nothing terrible happened but it was one of those days where I feel like I’m running round in circles. So I did the only thing you can do in this situation. Jeremiah, Isaac and Malachi had a quick early tea and for the last ½ an hour we have had my glee dvd on and we have been watching all the songs from the special features. Malachi is in the jumperoo and the older boys are dancing. Well, Isaac is on the floor mostly but at least he is happy. Jeremiah is attempting to breakdance which is absolutely hilarious.
No news from the SENCO today. But the class list for next year will be posted either tomorrow or friday. I don't mind what class Jeremiah is in but he is desperate to know one way or another.
Tuesday, 10 July 2012
Monday, 2 July 2012
Wednesday, 27 June 2012
I've recently discovered how to check how many views each post on the blog gets. Most posts are getting 1-3 views but the one about Eleanors anniversary got 7 I think and the one about Isaac using a wheelchair in tesco got 17. I have no idea why these 2 posts were so much more popular than the others and I'm curious so anyone who read those ones and not the others feel free to comment in the box to satisfy my nosiness. I'm also wondering who the 17 people are who read the wheelchair post.
My idle wonderings are mostly due to being on hold with the tax credit people for nearly 2 hours and not knowing how to use the speaker phone. I'm trying to do my tax credit renewal and I dread to think what my phone bill will be. I've just had to hang up so I can get Jeremiah from school so will have to do the whole thing again later.
Tuesday, 26 June 2012
I planned to go to the baby garden at the crematorium today as the chaplain who did Elisha's burial service said the garden is a lot nicer in summer than in february and Elisha's due date seemed like a good day to do it. But we all have colds, Malachi to the extent that he was being nebulised yesterday so we will leave that for another time.
Saturday, 16 June 2012
Thursday, 14 June 2012
Some photos of the smallest one at the children's centre who is now 17 months old!
On Tuesday we had another milestone, 17 months breastfeeding. This time last year I was pumping and freezing while Malachi had neocate formula. I thought this would be the end of breastfeeding but a year later I am still breastfeeding him.
Isaac has been really tired lately and struggling with all the appointments. Going to Exeter really wiped him out and he spent a lot of the pre-school session on Tuesday lying down. So I cancelled the occupational therapist appointment on wednesday and hopefully he will still be awake this afternoon for the school visit.
Thursday, 7 June 2012
But yesterday he said mama for the first time. And today he keeps saying it and looking very pleased with himself. Jeremiah and Isaac have been trying to get him to say their names but he can't manage that yet.
Tuesday, 5 June 2012
Last week was the week of appointments. On Monday we went to the GP who referred Isaac to the orthapeadic surgeon to try and sort out what shoes he can wear for PE. Then we went to orthotics at the hospital where they said that Isaac's feet haven't grown so he doesn't need new piedro boots. On tuesday Isaac did preschool in the morning while Malachi and I did breastfeeding group. The health visitor had a good moan at me for postponing Isaac and Malachi's immunisations for later in the week. In the afternoon we went to school to meet the occupational therapist, her student, the lady from the PIMS team and the school senco. The occupational therapist was lovely and actually asked Isaac what he wanted which was nice. She went round measuring everything and has ordered steps, grab rails and a toilet seat.
On Wednesday morning Isaac had his school induction meeting. We heard the same speech from the head and the teacher that we heard when Jeremiah started and we were shown a short video of what I thought would be the current reception class but turned out to be Jeremiah's year group. On Wednesday afternoon Isaac slept for 3 hours, absolutely shattered. On thursday Isaac was meant to be at preschool but at 11:30 they phoned me up and asked me to collect him as he had fallen asleep. So glad I postponed the immunisations. On Friday we had a letter from exter mobility centre and Isaac's new appointment is on 11th June. Isaac and I have already picked the wheelchair we would like. I really hope they agree and I'm worried they will offer us a special needs buggy or nothing at all. Isaac hates being "babied" because of his disabilities so he won't be happy if he has to go to school in a buggy. If we get nothing I won't be able to leave the house once he grows out of the buggy we have.
This week is half term. A chance to recharge our batteries and get some housework done before another busy week next week.
Monday, 4 June 2012
Friday, 11 May 2012
The physio wants Malachi to have piedro boots but his feet are so tiny they don't make them small enough. He is being referred to orthotics anyway to see if they can suggest anything. She also remembered Isaac which I thought was impressive seeing as she last saw Isaac at 5 months old. She said nobody could forget Isaac but I'm not sure if that's a good thing or not!
Isaac has a GP appointment next week to be referred to the orthopaedic team to sort out shoes for him to wear for PE at school. Then occupational therapy to measure him for a chair. Jeremiah is doing well. They had a supply teacher yesterday who brought his guitar which was very popular with the class. Even the little girl who has autism and doesn't do change well really liked him.
Tuesday, 8 May 2012
Today I talked to the SENCO at school about Isaac going part time. He is going to start off going Monday, Wednesday and Friday mornings. I took him to the disabled toilet at school today but he couldn't manage it himself. He keeps saying it's his toilet and he wants to visit it every day. He is doing really well with the potty training and has been dry for 4 days in a row. It's a lot harder than when he was in nappies but I'm so proud of him for managing it. He is at the stage when he wants to try out every toilet when we are out so the time in between picking him up from preschool and picking Jeremiah up from school is quickly filled up with a toilet tour of Wellington! Isaac has been going to preschool all day on Thursdays as well as Tuesday mornings since Easter. He is enjoying it but he is absolutely shattered afterwards.
I will try and blog about Jeremiah and Malachi next time.
Friday, 27 April 2012
...To this 4 year old.