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 The worry from the school is that the statement could be out of date by the time it is complete, but I would rather be sure.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!
Tuesday 27 April 2010
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.
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