My dad suffered from Parkinsons Disease for years. He just lived with it, and it became normal that my dad had this illness. He could be quite funny but he could also have quite a huff if he wanted to. ??? I wonder where I get my huffiness from!
I could speak loads of my dad but I will try to keep it brief. He was over the moon when I found out I was pregnant. Even with his illness he was a massive help to us when Kian was born, and Kian has such looks and tendencies that really remind me and my dearest of my dad.
Now I am in the world of disability, Ive come across so much that would have benefited my dad. It is a shame that not many people take on the responsibility of letting people know what is out there to help and make life more enjoyable. My brother cared for my dad for 12 years, I imagine a very hard task, but I cant imagine anyone else who would have done it as well.
When Kian was diagnosed, as I have blogged before, I chose not to have the blood test on myself immediately. I wanted to focus on what Kian needed. When we thought more on the blood test and myself and Craig felt ready to have it, I would not have been surprised if the blood test came back with myself being a carrier. This I probably thought because of my families history. The test came back showing our chromosomes "normal". Again as I have blogged before, my dad had passed away 3 days before our results came. I would have liked my dad to have known the results. Kian was 17 months then. I know he wont remember his grandad but I know that my dad does live on in Kian. I think my dearest agree too.
Im not sure if I was relieved that I was not a carrier of the gene that can create WHS. Another parent told me that they felt if they had carried the gene, whs happening to their child would be be more understandable. Spontanius is how it was described to my family. I know of a family who did not do the test and have went on to have a healthy child. I know of parents who conceive and then have a test to see if their child has any problems. It is a hard, but personal choice to all. I dont think there is a right or wrong.
When I told Craig of hearing of a relation to someone I know miscarrying a child with WHS, he said " We were meant to have Kian". Im not sure of what I feel when it is said disabled children go to special people, we are not perfect, but I know that we were meant to have him, my Kian David Henaghan!
Saturday, 15 May 2010
Saturday, 1 May 2010
My History
I remember when my mam first got her wheelchair. It wasnt the norm to see friends parents with wheelchairs. It wasnt that my mam had a disability. Or that is what I thought at the time. She was waiting for a transplant. At first it was a heart and lung, but when it came to her having it, she was given a double lung. I must state that my mam was a smoker. She had gave up when her health began to deteriate but by then it was quite in a poorly state. My mam couldnt walk to the gate from our front door without becoming breathless.
One false alarm and then she was in having the transplant that we thought would make the difference. Alot of pressure was put on our family and I think that is when the signs of my sisters epilepsy began. She was doing alot of running around and if I was her, I would have felt a great responsibility. Emma had shown signs of fainting and when staying overnight with our mam she had a seizure which I think began the diagnosis of epilepsy. Previously beforehand she had been taken in to hospital and I remember a cousin coming to school for me. Head of departments had came into class for other people before but never for myself. That time it had been for me. I thought the worst. I thought something had happened to my mam. It wasnt. It was my sister who was in hospital and she was ok and being monitored. I felt a relief. As an adult now I can think I should have been worried about everyone equally but at that time for some reason I thought it was bad news about my mam and I was pleased it wastnt.
There was one girl at school who used to always make a point of asking after my mam. I never realised she was kind of in the same situation.
We got a second call for our mam to go for her transplant. After the transplant, myself and my brother were eventually allowed to visit our mother. At first it was just our dad and my sister for health and hygiene reasons. Nothing prepares you for the Intensive Care Unit. You go in wash your hands and there was our mother lying in a bed with tubes everywhere. It was heartbreaking and when I cried I remember a nurse crying. That possibly gives me a bit of hope in the NHS system.
My mam eventually went in a ward and was givin exercises to work on. We saw her and she wrote us letters telling myself to do well on my duke of edingburgh that I was doing at school and I cant remember what she said to my brother and sister. We then got told to expect our mam home for christmas, she had been away since July, this was good news.
My dad came home and said that he had been told our mam wont last the night, this was October. I cant remember the exact words but it is more caring than blunt how our dad told us. Im not sure how I slept but my dad came into my room roughly at 8am and told me my mam passed away at 00.03 that morning. I didnt know what to feel. My friend knocked on my door at 8.30 for school as that is how unexpected it was for my mam to pass. I tell her the news and I hug her. We have been friends for a long long time. That is my first main tragedy of life!
One false alarm and then she was in having the transplant that we thought would make the difference. Alot of pressure was put on our family and I think that is when the signs of my sisters epilepsy began. She was doing alot of running around and if I was her, I would have felt a great responsibility. Emma had shown signs of fainting and when staying overnight with our mam she had a seizure which I think began the diagnosis of epilepsy. Previously beforehand she had been taken in to hospital and I remember a cousin coming to school for me. Head of departments had came into class for other people before but never for myself. That time it had been for me. I thought the worst. I thought something had happened to my mam. It wasnt. It was my sister who was in hospital and she was ok and being monitored. I felt a relief. As an adult now I can think I should have been worried about everyone equally but at that time for some reason I thought it was bad news about my mam and I was pleased it wastnt.
There was one girl at school who used to always make a point of asking after my mam. I never realised she was kind of in the same situation.
We got a second call for our mam to go for her transplant. After the transplant, myself and my brother were eventually allowed to visit our mother. At first it was just our dad and my sister for health and hygiene reasons. Nothing prepares you for the Intensive Care Unit. You go in wash your hands and there was our mother lying in a bed with tubes everywhere. It was heartbreaking and when I cried I remember a nurse crying. That possibly gives me a bit of hope in the NHS system.
My mam eventually went in a ward and was givin exercises to work on. We saw her and she wrote us letters telling myself to do well on my duke of edingburgh that I was doing at school and I cant remember what she said to my brother and sister. We then got told to expect our mam home for christmas, she had been away since July, this was good news.
My dad came home and said that he had been told our mam wont last the night, this was October. I cant remember the exact words but it is more caring than blunt how our dad told us. Im not sure how I slept but my dad came into my room roughly at 8am and told me my mam passed away at 00.03 that morning. I didnt know what to feel. My friend knocked on my door at 8.30 for school as that is how unexpected it was for my mam to pass. I tell her the news and I hug her. We have been friends for a long long time. That is my first main tragedy of life!
Tuesday, 27 April 2010
A very busy Tuesday!
We begun our tuesday by Kian getting ready and put on his transport to nursery. Myself and Craig had an hour and half before we were to go to the nursery for a couple of meetings.
We spoke informly to the head mistress at Kian's nursery. We spoke mainly of communication for us as parents. We decided for Kian to use transport as it is a great help but we still want good communication from nursery to home. There have been a few issues regarding snacks, for instance Kian's book telling us he had banana for snack but him having a segment of tangerine in his mouth when he came home, another saying he did not have a snack because it was hard carrots. ??? We were told that Kian would have been given something else in those instances, but a bit more communication to us at home would clear those things up. Also another parent told me that before the easter the class teacher was absent for a few weeks though we werent aware of it. Im sure Kian was perfectly looked after but at Kian's age without his difficulties he could possibly of told me his teacher wasnt in. I dont want to fall in the habit of thinking "well we dont need to know these things" or does it matter. I do want to know who is looking after Kian and if Kian cannot tell me then I expect communication. Is this unreasonable? Is this not what all parents would expect disability or not! We have also asked for Kian's statement of special educational needs to be started. The school did not want to start until Feb but have agreed to begin the process after summer. I was concerned of losing vital time that Kian could benefit from having a statement. The worry from the school is that the statement could be out of date by the time it is complete, but I would rather be sure.
We then met with Speech Therapist, Hearing Impaired Teacher and Kian's Class Teacher of two days per week. We expressed our concerns, wishes and expectations. It has been agreed that a ST assistant will spend time with Kian twice per week in quiet and busy time to assess where he is at and get to know Kian. The class teacher was of the opinion that Kian gets what we were asking within his nursery time. Nursery time has previously been 7 1/2 hours over the week and in that time he does group music and movement, swimming and rebound. Speech therapy we were told would transfer from the home to nursery when he started so we did and do expect for particlar specialised time to be spent with Kian on communication. I also dont think it is too much to ask for that someone gets to know Kian over time to see what his capabilites are. I said that I felt we were getting the minimum help possible. The hearing impaired teacher is going to come out to the home and do some sessions there. She is really nice and I have said in previous blogs how good the hearing impaired team are. I dont want to be negative about ST but since having Kian and if Kian is involved I speak as I find. Hopefully we will see and feel an improvement of this service for Kian. It is going to be reviewed mid term how the one to one time is going. I only hope that they dont remove this help if they dont see a great deal of improvement in a short time. Time is what Kian needs. In one sense Kian has all the time in the world but in another you cant get back time.
Next we went to get Kian measured for his lycra shorts. He was really good and I cant wait for him to give them a go. Im not expecting for him to take an immediate first step but hopefully it will give him more support which will give him the confidence to try. He is very eager and determined. He is also ready for a new pair of paedro shoes. By looking at his feet you can see he still needs support which the shoes will give. It will be his 3rd pair, and I remember initially being told he would not benefit from them. It is always worth asking and then maybe asking again! You never know!
Kian was funny at the baby stars group we have been to this afternoon. He kept on trying to take other childrens toys and though I strongly dont find it funny him doing it, I am pleased as it is another development stage he is going through. We do tell him he has to share and we return the toy to the rightful owner. We want the balance of Kian knowing what is right and wrong and giving certain allowances for his disability. It was funny though when he had ate his cake and bum shuffled over to a little girls cake and quickly put it in his mouth before I could stop him. He knew it was food and he knew he wanted it. I wonder where he gets his love of food from!
We spoke informly to the head mistress at Kian's nursery. We spoke mainly of communication for us as parents. We decided for Kian to use transport as it is a great help but we still want good communication from nursery to home. There have been a few issues regarding snacks, for instance Kian's book telling us he had banana for snack but him having a segment of tangerine in his mouth when he came home, another saying he did not have a snack because it was hard carrots. ??? We were told that Kian would have been given something else in those instances, but a bit more communication to us at home would clear those things up. Also another parent told me that before the easter the class teacher was absent for a few weeks though we werent aware of it. Im sure Kian was perfectly looked after but at Kian's age without his difficulties he could possibly of told me his teacher wasnt in. I dont want to fall in the habit of thinking "well we dont need to know these things" or does it matter. I do want to know who is looking after Kian and if Kian cannot tell me then I expect communication. Is this unreasonable? Is this not what all parents would expect disability or not! We have also asked for Kian's statement of special educational needs to be started. The school did not want to start until Feb but have agreed to begin the process after summer. I was concerned of losing vital time that Kian could benefit from having a statement. The worry from the school is that the statement could be out of date by the time it is complete, but I would rather be sure.
We then met with Speech Therapist, Hearing Impaired Teacher and Kian's Class Teacher of two days per week. We expressed our concerns, wishes and expectations. It has been agreed that a ST assistant will spend time with Kian twice per week in quiet and busy time to assess where he is at and get to know Kian. The class teacher was of the opinion that Kian gets what we were asking within his nursery time. Nursery time has previously been 7 1/2 hours over the week and in that time he does group music and movement, swimming and rebound. Speech therapy we were told would transfer from the home to nursery when he started so we did and do expect for particlar specialised time to be spent with Kian on communication. I also dont think it is too much to ask for that someone gets to know Kian over time to see what his capabilites are. I said that I felt we were getting the minimum help possible. The hearing impaired teacher is going to come out to the home and do some sessions there. She is really nice and I have said in previous blogs how good the hearing impaired team are. I dont want to be negative about ST but since having Kian and if Kian is involved I speak as I find. Hopefully we will see and feel an improvement of this service for Kian. It is going to be reviewed mid term how the one to one time is going. I only hope that they dont remove this help if they dont see a great deal of improvement in a short time. Time is what Kian needs. In one sense Kian has all the time in the world but in another you cant get back time.
Next we went to get Kian measured for his lycra shorts. He was really good and I cant wait for him to give them a go. Im not expecting for him to take an immediate first step but hopefully it will give him more support which will give him the confidence to try. He is very eager and determined. He is also ready for a new pair of paedro shoes. By looking at his feet you can see he still needs support which the shoes will give. It will be his 3rd pair, and I remember initially being told he would not benefit from them. It is always worth asking and then maybe asking again! You never know!
Kian was funny at the baby stars group we have been to this afternoon. He kept on trying to take other childrens toys and though I strongly dont find it funny him doing it, I am pleased as it is another development stage he is going through. We do tell him he has to share and we return the toy to the rightful owner. We want the balance of Kian knowing what is right and wrong and giving certain allowances for his disability. It was funny though when he had ate his cake and bum shuffled over to a little girls cake and quickly put it in his mouth before I could stop him. He knew it was food and he knew he wanted it. I wonder where he gets his love of food from!
Tuesday, 20 April 2010
Friends Old and New
The easter holidays have been great for catching up with friends.
Just before the hols we were able to catch up with my friend Maz. Kian and I had not saw her for ages. I first met Maz in 2005. When I found out I was pregnant in May 2006, which was roughly a couple of hours after my driving test( 2nd time round passed), Maz was the first person I told. I called her as I was so in shock. I had just bought the tester on the off chance, just after I had been into a shop to buy a bottle of Moet to celebrate my passing of Driving test. She was actually in town shopping and had my call on hands free as I told her the news. She was a friend I met at work and she kept my pregnancy news until I was confirmed 3 months gone. What a lovely lady she is. She is a newly grandmother so had lots of toys and treats for Kian when we visited. He had a fantastic day! Kian had so much fun, love and attention that day, and I came away I think a half a stone heavier for what she fed me. Maz is someone who would have made a great childminder / nursery nurse. We spoke of that when we worked together and when I saw how she was with Kian, I know she would have been fantastic!
I drove back to Catterick one day with Craig so I popped to see my dear friend Rena. The last time we saw each other was when I was pregnant. It was lovely for her to see Kian for the first time. What is strange or co-incidental is that myself and Rena worked together a long time ago, but now she works with adults with learning difficulties. She started that job before I had Kian. What I love about real friends is that, it doesnt matter how much time you have had from seeing each other, when you meet up again there is nothing strange about it. It is like you only saw each other yesterday or spoke on the phone an hour ago.
It was lovely to catch up at home with one of my oldest friends. We used to live round the corner from each other when we were very little. We had matching prams and I used to love staying over on a weekend. Fast forward 15 years. In between that S had came to our night time wedding do, we went to her engagement do and there had been a letter or two in between. Then FaceBook comes along. Kian loved spending the morning with her two lovely children. Again, it did not feel like there was all that time in between and here were "our" children playing. Kian, bless him, enjoys the company of other children so much. He squeals with delight when other children are getting excited. Hopefully one of many catch ups.
My everyday friends know who they are. They are at the end of the phone. They are there for a catch up, be it with kids or without. They are the friends that are helping to arrange a charity event to raise funds for Wolf Hirschhorn Syndrome Trust. They are the friends who are there for me and Kian. They know how to pick you up. They know just to be there for you without words. I have had my circle of friends for years and that has not changed with Kian. When I look at other blogs or fb profiles I love to see to loyalty and love of friends, it means alot. My brother and sister I count as friends as well as siblings. Without them I would not be where I am with Kian.
In our now familiar world of disability, we have new friends. Maybe our paths would not have crossed if our children did not have the issues they do, but I have met some lovely people. I am meeting new parents that are coming into our world. I would like to tell them that this path is not as horrible as what some people say, but the truth is, it can be horrible. At times it is brutal, you have to fight for help, services and support that should be there for your family. But like I have said before and will hopefully continue to say, when you strip all the ugliness away of fighting for services and entiltlements, we have very special children.
When I check on Kian for the 6th, or 10th time that night, I could squeeze him with love. I love him because he is there. I love him because I am proud of what he has achieved that day. I love him because each time I walk into his room I never know if he will be breathing. This may sound melodromatic, but epilepsy does that to you. I check on Kian many many times of the night but I could be worse but we have to balance out worry v life. I do not feel unlucky to have Kian, I feel unlucky that he will not be able to achieve all in life that he should have been able to achieve. But Kian will achieve what we, family, friends and the community give him opportunity to achieve. He is a capable little boy, maybe just not in the ways that some people expect!
Just before the hols we were able to catch up with my friend Maz. Kian and I had not saw her for ages. I first met Maz in 2005. When I found out I was pregnant in May 2006, which was roughly a couple of hours after my driving test( 2nd time round passed), Maz was the first person I told. I called her as I was so in shock. I had just bought the tester on the off chance, just after I had been into a shop to buy a bottle of Moet to celebrate my passing of Driving test. She was actually in town shopping and had my call on hands free as I told her the news. She was a friend I met at work and she kept my pregnancy news until I was confirmed 3 months gone. What a lovely lady she is. She is a newly grandmother so had lots of toys and treats for Kian when we visited. He had a fantastic day! Kian had so much fun, love and attention that day, and I came away I think a half a stone heavier for what she fed me. Maz is someone who would have made a great childminder / nursery nurse. We spoke of that when we worked together and when I saw how she was with Kian, I know she would have been fantastic!
I drove back to Catterick one day with Craig so I popped to see my dear friend Rena. The last time we saw each other was when I was pregnant. It was lovely for her to see Kian for the first time. What is strange or co-incidental is that myself and Rena worked together a long time ago, but now she works with adults with learning difficulties. She started that job before I had Kian. What I love about real friends is that, it doesnt matter how much time you have had from seeing each other, when you meet up again there is nothing strange about it. It is like you only saw each other yesterday or spoke on the phone an hour ago.
It was lovely to catch up at home with one of my oldest friends. We used to live round the corner from each other when we were very little. We had matching prams and I used to love staying over on a weekend. Fast forward 15 years. In between that S had came to our night time wedding do, we went to her engagement do and there had been a letter or two in between. Then FaceBook comes along. Kian loved spending the morning with her two lovely children. Again, it did not feel like there was all that time in between and here were "our" children playing. Kian, bless him, enjoys the company of other children so much. He squeals with delight when other children are getting excited. Hopefully one of many catch ups.
My everyday friends know who they are. They are at the end of the phone. They are there for a catch up, be it with kids or without. They are the friends that are helping to arrange a charity event to raise funds for Wolf Hirschhorn Syndrome Trust. They are the friends who are there for me and Kian. They know how to pick you up. They know just to be there for you without words. I have had my circle of friends for years and that has not changed with Kian. When I look at other blogs or fb profiles I love to see to loyalty and love of friends, it means alot. My brother and sister I count as friends as well as siblings. Without them I would not be where I am with Kian.
In our now familiar world of disability, we have new friends. Maybe our paths would not have crossed if our children did not have the issues they do, but I have met some lovely people. I am meeting new parents that are coming into our world. I would like to tell them that this path is not as horrible as what some people say, but the truth is, it can be horrible. At times it is brutal, you have to fight for help, services and support that should be there for your family. But like I have said before and will hopefully continue to say, when you strip all the ugliness away of fighting for services and entiltlements, we have very special children.
When I check on Kian for the 6th, or 10th time that night, I could squeeze him with love. I love him because he is there. I love him because I am proud of what he has achieved that day. I love him because each time I walk into his room I never know if he will be breathing. This may sound melodromatic, but epilepsy does that to you. I check on Kian many many times of the night but I could be worse but we have to balance out worry v life. I do not feel unlucky to have Kian, I feel unlucky that he will not be able to achieve all in life that he should have been able to achieve. But Kian will achieve what we, family, friends and the community give him opportunity to achieve. He is a capable little boy, maybe just not in the ways that some people expect!
Monday, 5 April 2010
Peter Pan
Craig and I were having a conversation yesterday which always crops up now and again. We spoke of what Kian may have been doing at his age without his disability. 3 year olds are doing quite a bit and are very inquisitive. Kian is very inquisitive in his own right. I remember a therapist saying to us a long time ago that for "everyday parents" the development of their child is like a train going by quite fast, you dont see every single window on that train. But for us what we experience is that we see every single window on that train. Each element of Kian's development is a massive step and we get to experience that and enjoy it. We know that the money we put in Kian's bank account each month will not be going to pay for driving lessons or for university. People may say you never know, but I do know that those are two things that Kian's money wont be used on. The gap of development delay does widen but the thing that keeps you going and keep striving for more is that Kian continues to develope. He is definitely a tryer. There is not enough medical interest in Wolf Hirschhorn Syndrom to make a difference at this time, this is my opinion, but I am grateful for all of the families that I have met with children of the syndrome. Without them my knowledge would be little. At the end of our conversation yesterday, Craig said Kian would be our Peter Pan, he would be young forever and I think he probably will be!
It is our 4th easter with Kian, how time flies. Next september he will be at school full time, that is scary. I remember not long after diagnosis some people asking if Kian would even go to school. There is alot for people to know and learn about disability.
On saturday we visited Kian's great aunt and uncle up at a caravan park. He loved it there and I have to say I love the atmosphere that you get from that environment. Over the last two years we have taken Kian to different sites and we have all really enjoyed them. It would be nice to have somewhere of our own to go to where Kian could feel comfortable and where other children would become familiar with Kian and his needs. Craig says we will buy one when he gets his pension from the army but we may have to work on him before then.
On sunday Kian's grandad took him for one of his famous walks whilst I made dinner. I quite enjoy making dinner on special occassions. Dave's special walks means it is sometimes best not knowing everything that actually happened on that walk, I say that in the nicest way. Kian did come back with a new dummy, a bag of candy floss, and plenty colour in Kian's cheeks. We then had a lovely dinner, I may be biased with some great company.
Two of our neighbours called to give Kian an easter treat. Some children were playing outside so we took Kian outside to watch, he got really excited watching them. One of the boys said, when Kian is older he can come and play cant he? Bless him, Im not sure what the future will hold, but I know we chose the right street to buy our house. It is not a big house, but I love it and the street is right for Kian, I know that.
It is our 4th easter with Kian, how time flies. Next september he will be at school full time, that is scary. I remember not long after diagnosis some people asking if Kian would even go to school. There is alot for people to know and learn about disability.
On saturday we visited Kian's great aunt and uncle up at a caravan park. He loved it there and I have to say I love the atmosphere that you get from that environment. Over the last two years we have taken Kian to different sites and we have all really enjoyed them. It would be nice to have somewhere of our own to go to where Kian could feel comfortable and where other children would become familiar with Kian and his needs. Craig says we will buy one when he gets his pension from the army but we may have to work on him before then.
On sunday Kian's grandad took him for one of his famous walks whilst I made dinner. I quite enjoy making dinner on special occassions. Dave's special walks means it is sometimes best not knowing everything that actually happened on that walk, I say that in the nicest way. Kian did come back with a new dummy, a bag of candy floss, and plenty colour in Kian's cheeks. We then had a lovely dinner, I may be biased with some great company.
Two of our neighbours called to give Kian an easter treat. Some children were playing outside so we took Kian outside to watch, he got really excited watching them. One of the boys said, when Kian is older he can come and play cant he? Bless him, Im not sure what the future will hold, but I know we chose the right street to buy our house. It is not a big house, but I love it and the street is right for Kian, I know that.
Wednesday, 24 March 2010
A bit of a stressfull week!
Well I knew it was round the corner, Kian has a seizure on monday. He had been a little off over the weekend, but he seemed ok on monday so I took him to nursery as he really does love it. I said he had been a little off and to ring me if he didnt seem himself. They called me at lunch time and I brought him home. I put his favourite In the night garden programme on and I went into the kitchen to get him a dose of neurofen as he had already had calpol at nursery. When I came back through he was bent over in his chair fitting. I could have been classed as an absence seizure and his body was making no movement, but it went on for roughly 3 mins. I had his dose of midazolam ready but I was so pleased that he came out of it himself before the 5 mins. This has been the first time this has happened and Im hoping it to be a good thing. I had called the doctors before his fit to try and get an appointment to get him checked over but I was told to call back in the morning. After the fit I called again to get him checked out. We got an appointment and the doctor informed us Kian had an ear infection. It can all be a vicious circle as he doesnt seem to be moving his bowels which isnt normal for Kian. He has been given antibiotics and is seeming better already. We agreed with our consultant that we would contact her if Kian had two seizures, then she would up his meds. Luckly he did only have the one so we will see how things go. Count down begins again for the seizures!
Yesterday I attended a session on advacy for parents. It was really good and I did come away with some useful tips and advice. In this kind of environment parents and carers have had some terrible experiences and really want to off load them. Will it always be parents v professionals? I hope not but there are good professionals out there but you can also come across some not so good, maybe the job has worn them down, Im not sure.
I do have an issue still about Kian's speech therapy. Most people who know me are aware that when I get a bit between my teeth it is very hard for me to let go. This only developed in me once I had my child. I am not perfect, but I want and try for what is best for him. Maybe I will get it wrong sometimes, Im only human. But my little boy is under estimated at times. A solution to our problem would be for Kian to have a one to one session of speech therapy at nursery at least once per week for that person to get to know Kian and for him to be comfortable to engage with that person. I really dont think that is an unreasonable request. We shall see what happens as I have voiced my concerns. Kian is only 3, but communication is something that can be worked on.
A great surprise this week was finding out there is another family in our area with a child with whs. Their child is 4 months old and is a gorgeous little fella. They actually have the same consultant who we had at diagnosis. He told them he used to have a patient with WHS. Because of what they had been told of the condition and because he did not say anymore of us, they did think that the patient had died. Luckly we share a dietician who liased between us to see if we wanted to get in touch. The dietician couldnt believe it, she said, to never have a child with whs, and now she has two in her caseload is unbelievable. I wont go into this families details as it is their story to tell if they want, but to hear certain things that they were told about the syndrome is awful. It crossed my mind, how would I have felt or reacted to be told certain things before Kian was born or when he was just born. In a way, I cant believe Kian wasnt diagnose till 10 months. A parent has asked me before if I really didnt know anything. A relative today said she remembers me thinking there was a problem, but lots of people said that because Kian was small, it would just take time for him to catch up.
It is sad for another child to have the syndrome as it does bring difficulties but I hope that we can help and support this family in any way possible. But though I know that there are some really tough times, and at times you dont know why you have been chosen for you and your child to follow this different kind of life, having a disabled child isnt the end of the world. Sometimes you have no control over what happens but you can only try to do your best like any parent.
Yesterday I attended a session on advacy for parents. It was really good and I did come away with some useful tips and advice. In this kind of environment parents and carers have had some terrible experiences and really want to off load them. Will it always be parents v professionals? I hope not but there are good professionals out there but you can also come across some not so good, maybe the job has worn them down, Im not sure.
I do have an issue still about Kian's speech therapy. Most people who know me are aware that when I get a bit between my teeth it is very hard for me to let go. This only developed in me once I had my child. I am not perfect, but I want and try for what is best for him. Maybe I will get it wrong sometimes, Im only human. But my little boy is under estimated at times. A solution to our problem would be for Kian to have a one to one session of speech therapy at nursery at least once per week for that person to get to know Kian and for him to be comfortable to engage with that person. I really dont think that is an unreasonable request. We shall see what happens as I have voiced my concerns. Kian is only 3, but communication is something that can be worked on.
A great surprise this week was finding out there is another family in our area with a child with whs. Their child is 4 months old and is a gorgeous little fella. They actually have the same consultant who we had at diagnosis. He told them he used to have a patient with WHS. Because of what they had been told of the condition and because he did not say anymore of us, they did think that the patient had died. Luckly we share a dietician who liased between us to see if we wanted to get in touch. The dietician couldnt believe it, she said, to never have a child with whs, and now she has two in her caseload is unbelievable. I wont go into this families details as it is their story to tell if they want, but to hear certain things that they were told about the syndrome is awful. It crossed my mind, how would I have felt or reacted to be told certain things before Kian was born or when he was just born. In a way, I cant believe Kian wasnt diagnose till 10 months. A parent has asked me before if I really didnt know anything. A relative today said she remembers me thinking there was a problem, but lots of people said that because Kian was small, it would just take time for him to catch up.
It is sad for another child to have the syndrome as it does bring difficulties but I hope that we can help and support this family in any way possible. But though I know that there are some really tough times, and at times you dont know why you have been chosen for you and your child to follow this different kind of life, having a disabled child isnt the end of the world. Sometimes you have no control over what happens but you can only try to do your best like any parent.
Thursday, 18 March 2010
Quick update
Kian has got his appointment through to be measured for some lycra shorts. This is at the end of April. I think his top half of his body could be helped also but we will see how the shorts go. Hopefully this will give more stability for Kian to stand and hopefully take those steps for his physio goal!
I went to a makaton group yesterday at Kian's nursery. It was really good and I learned some new interesting signs. Most of them were food, yum, mine and Kian's favourite thing. Going to the group I think gives you more encouragement about signing. The therapist running the group was lovely. I also met a parent who has a little boy in Kian's class which was lovely. We will hopefully keep in touch.
Our OT is coming next week to see if she has a chair that Kian could use at home for activites. The one we have is a little young for him now. I was looking forward to going out and buying a little table and chair set for him, but if the OT has something more suitable we will go with it.
6 months for Kian without a seizure. You really do dread writing those words as you never know what is round the corner. He is doing really well at the moment and seems so happy and healthy. Fingers crossed.
I went to a workshop on tuesday for confident parenting. It was based on your children having behaviour issues. My reason for going was to be proactive about Kian and his behaviour. He gets so frustrated through lack of communication and mobility. I found it quite useful. Some stories you hear from parents, especially in mainstream school are horrendous!
Im off to a workshop next week ran by Afasic who are a speech and communication charity. This is about advocacy for parents. I think this will be greatly helpful! http://www.afasic.org.uk/
I went to a makaton group yesterday at Kian's nursery. It was really good and I learned some new interesting signs. Most of them were food, yum, mine and Kian's favourite thing. Going to the group I think gives you more encouragement about signing. The therapist running the group was lovely. I also met a parent who has a little boy in Kian's class which was lovely. We will hopefully keep in touch.
Our OT is coming next week to see if she has a chair that Kian could use at home for activites. The one we have is a little young for him now. I was looking forward to going out and buying a little table and chair set for him, but if the OT has something more suitable we will go with it.
6 months for Kian without a seizure. You really do dread writing those words as you never know what is round the corner. He is doing really well at the moment and seems so happy and healthy. Fingers crossed.
I went to a workshop on tuesday for confident parenting. It was based on your children having behaviour issues. My reason for going was to be proactive about Kian and his behaviour. He gets so frustrated through lack of communication and mobility. I found it quite useful. Some stories you hear from parents, especially in mainstream school are horrendous!
Im off to a workshop next week ran by Afasic who are a speech and communication charity. This is about advocacy for parents. I think this will be greatly helpful! http://www.afasic.org.uk/
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