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.
Wednesday 24 March 2010
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/
Wednesday 17 March 2010
Multi-disciplinary meeting
Last week we had Kian's multi-disciplinary meeting at nursery. Physio, OT, Speech, Kian's other nursery's key worker attended alongside, me, Craig and Kian's nursery teacher.
Overall it was a positive meeting. Alot was spoken of how Kian has come on in personality and determination. His target from his physio, is to take 2 independant steps. She said it was an ambitious target but she felt with work and encouragement it was possible. We are waiting for a walker for Kian and also an appointment at a clinic for him to be measured for a lycra garment. Hopefully this will give him more stability.
OT is still working along the same lines of trying to have him on his tummy. But because he is quite determined not to be handled doing this they are going to think of other activites to encourage his co-ordination.
His teacher at his nursery said she felt Kian had settled in well.
His nursery key worker from his private nursery had lots of positive things to say of Kian. She also had in mind to created a book with photos of me and Dad, and then his favourite toys, and to say the words to him. She has noticed him making different sounds to certain words, for example "hello", and "look at this mess".
Our speech therapist felt we could not assume that Kian is making a particular sound to a word or an object as he would have to understand what the word or object means. This is where I find a large problem! All children can be SO underestimated. I know what words and objects Kian understands. I will ask him where something is and he will get it, for example, his ball, chair, train, boat, igglepiggle, the list actually does go on. I dont want to be opposed to our therapists opinion but I feel that opinions like that need backed up, and it wasnt. She see's Kian briefly at nursery and informed us that he is too tired to participate in her activities, after a physical activity. So I wonder what is being done about that? Nothing until we persist and pester, which you really do get tired of having to do. I say this as my opinion at the moment. Kian has developed with communication but I cant help feel that we are being let down by this service and that the therapist doesnt really know Kian. We do not have a regular date to see her which I requested at the meeting, to have. I will meet with her after easter. I am planning to film Kian as much as possible to show what Kian is able to do. I hope this will help in some way. I really want to have a positive opinion about this service, but I dont at this time. I may be seen as an awkward parent for asking for help. The majority of professionals have not come across whs, does this make Kian any less important than children with more well known conditions/syndromes. All our children deserve the best possible service available and more.
The nursery are going to create some pictures for home and private nursery to use for recognition. I see this as a positive approach.
Kian's statement will be begun in September, which will determine what help he does need and where his needs would be best met!
Overall it was a positive meeting. Alot was spoken of how Kian has come on in personality and determination. His target from his physio, is to take 2 independant steps. She said it was an ambitious target but she felt with work and encouragement it was possible. We are waiting for a walker for Kian and also an appointment at a clinic for him to be measured for a lycra garment. Hopefully this will give him more stability.
OT is still working along the same lines of trying to have him on his tummy. But because he is quite determined not to be handled doing this they are going to think of other activites to encourage his co-ordination.
His teacher at his nursery said she felt Kian had settled in well.
His nursery key worker from his private nursery had lots of positive things to say of Kian. She also had in mind to created a book with photos of me and Dad, and then his favourite toys, and to say the words to him. She has noticed him making different sounds to certain words, for example "hello", and "look at this mess".
Our speech therapist felt we could not assume that Kian is making a particular sound to a word or an object as he would have to understand what the word or object means. This is where I find a large problem! All children can be SO underestimated. I know what words and objects Kian understands. I will ask him where something is and he will get it, for example, his ball, chair, train, boat, igglepiggle, the list actually does go on. I dont want to be opposed to our therapists opinion but I feel that opinions like that need backed up, and it wasnt. She see's Kian briefly at nursery and informed us that he is too tired to participate in her activities, after a physical activity. So I wonder what is being done about that? Nothing until we persist and pester, which you really do get tired of having to do. I say this as my opinion at the moment. Kian has developed with communication but I cant help feel that we are being let down by this service and that the therapist doesnt really know Kian. We do not have a regular date to see her which I requested at the meeting, to have. I will meet with her after easter. I am planning to film Kian as much as possible to show what Kian is able to do. I hope this will help in some way. I really want to have a positive opinion about this service, but I dont at this time. I may be seen as an awkward parent for asking for help. The majority of professionals have not come across whs, does this make Kian any less important than children with more well known conditions/syndromes. All our children deserve the best possible service available and more.
The nursery are going to create some pictures for home and private nursery to use for recognition. I see this as a positive approach.
Kian's statement will be begun in September, which will determine what help he does need and where his needs would be best met!
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