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!

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.

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.

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/

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!

Half term appointments

Dental Hospital
We had an appointment at the dental hospital for Kian because of his gums being indented above his front teeth. Craig had been the first to notice this, so we got it checked out with the special needs dentist. He decided to get a second opinion, though his opinion was it was fine but there is an operation to correct it. It was our first time at the dental hospital, and it has been the only place where I have saw a sign that said " if you wait 20 mins let the receptionist know". Well we didnt have to wait long. Kian has had a cold and been not himself at all so we werent sure how the appointment would go. He was quite good for the dentist. The dentist said his teeth look fine, though his top ones look like they may cross over. This can be reviewed later on and helped if needed. I do remember another parent tell me that they had their childs teeth corrected, but after the brace the teeth went to how they had been previously. Not sure if this is to do with some children not getting their second teeth. Kian just has to wait for his bottom back two teeth to come in. He is teething terribly at the moment and drooling constantly. The dentist said she didnt think we would get a good x-ray for above his top front teeth, but it will be monitored and she did not think it would cause him any problems at the present. She mentioned that our local dentist had noticed a small piece of skin attached to Kian's palate, and there was possibly a bit of bone missing. I questioned this more and she said she definitely didnt think this was a problem or would have any baring on speech. We will see our local dentist every 6 months and see how things go.

Paediatrician appointment
We see our paediatrician roughly every 4 months. She is a lovely doctor. She noticed a big difference in how mobile Kian was and he was giving her some nice eye contact. He is now 12kg and 88 cm long. She suggested speaking to the physio about a walker. I feel that it may be the time to try a specialised walker but we shall see what our physio says. She comes next week. In the meantime we have been letting Kian use the baby walker, though alot of professionals class this as a big no no. I spoke of how I feel I need to understand about speech and communication more. Speech is the service we have that does not feel gelled. The other services keep you involved and enthusiastic. I dont feel we get that from the speech service. They have recently held a workshop about their service and how to engage with parents. Hopefully this is a step forward. We discussed Kian's behaviour as he is a little flighty with his hand at the moment, usually with me getting a smack of him on my face. Hopefully this is a phase that will pass. Kian does understand "no", but at times will laugh when told this. This is a concern of mine, but we will be persistant and direct and hopefully this will pass. Our doctor is going to write to the ent consultant about what the dentist said about Kian's palate, and ask him to have another look at it. She said it is only a thought but with Kian not sleeping great during the night and coughing, could it be that his liquid supper is lying where is shouldnt. We will go back in another 4 months, but will be having a multi disciplinary meeting soon where all the professionals meet with us to discuss Kian.

One thing the doctor asked was whether I have any friends at the mainstream private nursery Kian goes to. He only goes one day and I am generally in and out. But I did go to baby group with a mother who had two children go to the same nursery. Contact has eventually decreased to nothing, though if we saw each other in the street we would definitely chat. One clear thing I remember is when I told this mother that Kian was going to this nursery, she replied that she didnt realise that the nursery took children like Kian. That is something I will remember though honestly I know she thought nothing of that comment. Alot of people need educating. Sometimes you feel like you have not the energy to be the person to do it. There has been a few times it has crossed my mind to take Kian out of the mainstream nursery. I am so pleased I havent. It has been a massive part of Kians development, no matter how slow. Kian's dieticians child goes to the same nursery and has been in the same class at times. She told me that her daughter said to her once, Kian doesnt talk and he has really small feet. She wasnt sure of how much her child would know about Kian. Children are so honest, I found that comment, sad but funny at the same time. It is a sad thing that Kian has this condition, and the live that we have to lead through it. It is extremely hard and draining, but I never ever think that Im unlucky to have Kian. I believe people should appreciate what they have as you never know what is round the corner or what could have been, but we are lucky to have Kian, he is a sweetheart!

Feb 10

Kian's physio's have just left our home. We had a meeting with his main physio, his TI and a physio from his special nursery. Kian was supposed to be at nursery today but he is a little unwell. It seems to be a bit of a cold but he is getting a little hot too. I have kept him off nursery to be on the safe side. The meeting was to discuss how things are and if we were happy with what service we are getting. At the beginning of our therapy journey I was not happy, but since we had our new physio, who we have had for almost 2 years things have greatly improved. She speaks to you with feeling and a caring attitude. Our first physio made us feel like Kian wasnt worth the bother. It is awful how many professionals, parents come across like that. The physio TI would come out every two weeks but we have now stopped that, and the main physio will come out to the home once a month. It has felt time to move on slightly.
We are waiting for Kian to be assessed for lycra. After seeing some fellow whs children using theratogs, braces etc I asked our physio about such for Kian. At the moment she feels that Kian is too good for lycra, which is what was suggested our local service supply in their budget. She feels that Kian is close to stepping, that it is not totally balance that is stopping him but confidence. I have a lot of respect for the opinion, but Im not sure. I am of the opinion that if there is something possible to help Kian then we should try it. We are going to try neoprene swim trunks to see if that makes a difference as they are meant to be similar.

Nursery is going well, I am looking to finding out about statements which guarentees your children accesses what they need. Kian's nursery is an assessment nursery so he accesses all the different therapies but his statement will be begun next year.

We think the hearing aids may be helping. Kian will sign baby and say, ah which has been progress. If he is eating and someone has said "what a mess", it has sounded like he has tried to copy. This has given me hope that Kian might one day say a word. Our genetic doctor told us that Kian will never speak sentences like you and I, but words are very possible. Let's hope. At his monday nursery, his keyworker has told us Kian does not sign as much but is making more sounds. I still do not like putting the hearing aids in, but I am hoping it will get easier. He wears them all day unless he is sleeping. We have a hearing test in two weeks. When we were at ENT, the doctor removed one of his grommets that were on their way out. The other is still in. He hopes because Kian's adnoids were removed that he may not need grommets again. We now go to a monthly group which is for children with hearing impairments. There is beautiful little girl who is profoundly deaf, she signs lots and is very clever. Then there is an almost ready to walk 9 month year old who has her little pink hearing aids. All the children were fantastic and their parents were great. I felt very comfortable meeting them all and I think it helped that the group are ran by the hearing impairment team. They have been one of the nicest teams I have come across.

I have become a member of the Steering group in our area. They aim to arrange 2 conferences a year for parents like myself to hear from professional, organisations and other parents. There is also alot of other work being done in our area to improve the lives of children and families with disabilities. I have become involved as there is so much that we have not been happy with as a family with a disabled child, but also we have felt let down by the services at times that I want to be involved to help make a difference for the future!