Therapists

When our paediatrician told us about wolf hirschhorn syndrome, we were told there was no treatment, no cure but lots of support would be given. I have found that this support is not automatically given. You have to keep on at services, sometimes you feel like you are begging for what SHOULD BE there to help your child and your family. There are some great professionals out there, but there are also the ones that you wish you did not have to come across.

• PHYSIO Referral was made to physio and Kian's first appointment was 31st Jan,08. Kian had 6 appointments over 6 weeks with a gap in between. Then his appointments were set to one per month. I asked why this was and was told that because Kian was not changing quickly then there was no need for more frequent sessions. We were doing the exercises at home, though there was not a great variety. We were issued with a corner chair, which did help, a table and a wedge to use for tummy time. I questioned the monthly sessions again as I heard so much about early intervention. I did not expect miracles but we wanted to give Kian the best opportunity. We have a report from that physio which states that she would continue to work with Kian within the limits of his medical condition. ??? What excactly are the limits? We knew that low muscle tone plays a massive part in the delay of Kians motor development, but there are children with whs that have crawled and walked at different ages, one girl before the age of 2. She told us that Kian's condition had a poor prognosis and that some children do not get further than where Kian was, which was sitting supported. This was no good to us. We try as a family to be realistic but also hopeful of Kian maximising HIS potential. We requested another physio. We had a meeting which ended up with the head physio asking if she could take Kian on. We would try blocks of therapy and then possibly a period of consolidation. This was a great result. This physio now overlooks Kian. She goes into his nursery to show the staff there positions etc, she comes out to us reguarly, and we have a physio technical instructor who comes out weekly in term time. A TI is not a qualified through university physio, but more of who has learned through hands on. We had changed physio's a year ago. Kian can now sit, sit himself up, stand supported, get in the crawling position (though not yet getting anywhere), pull onto knees, and most recently he has pulled himself from sitting to standing against the sofa. This is early days though. Kian does not have a standing frame. His physio decided that it would not be best for Kian, and I am hoping that it is the right decision. I am excited for Kian to crawl if he is going to, as I think it will open loads more avenues for him. He has the motivation, so fingers crossed!

• SPEECH THERAPY Kian was referred by physio in february to SALT. Our first appointment was in march which was initially for an eating and swallowing assessment. We were given good advice on feeding and which foods to try. We recently had problems with the service when we asked for a little more advice and ideas to try with Kian for communication. Kian loves children and we would like more than ever for him to be able to communicate with other people. There has been times of frustration for him which makes us frustrated for him. What we have come up against, is being told there is not enough man hours from the services, and we were recently told that we should count ourselves lucky for the therapy that we had received. Is this something that parents of a disabled child should be faced with? Is there not enough that we have to cope with! Well, it may be fact that services need more money, hours, staff, but our child is disabled and we need those services to help our son progress. Our therapist did use exercises from the Hanen Centre http://www.hanen.org/. We have a new therapist coming out tomorrow who works in the nursery that Kian will be going to in Sep. We do use objects of reference alot with Kian, this works for us. Also Kian has went to a sing and sign class which is a mainstream group aimed at babies and toddlers. We have went for over a year. Kian's first sign was more. A couple of months ago he began signing all gone, finished. Then recently he has been signing friend. We are really proud of him. These are makaton signs. Yesterday when we were out and his dad came up to him from somewhere else he signed friend. I feel he associates this with people who are familiar. He also signs it when his favourite programme, In the night garden, comes on. I don't know how his speech will develop, but we will keep trying!

• OCCUPATIONAL THERAPY Kian was referred to OT in Feb, 08. We filled in a questionnaire. We waited a year to be seen. This was a service well worth the wait. In the time that we waited some professionals said it did not matter not having this service at Kian's age. I may not be a professional but I disagree. They encourage work on the tummy, exercises to strengthen the shoulders, and work on the finer motor skills. We have an OT TI who comes out every two weeks, Kian gets on very well with her and she takes no nonsence. Then we have an OT who oversees the TI and who goes into the nursery to give recommendations. There is lots more to this service for us to find out about and also to utalise.

• PORTAGE Portage is a home service where a pre-school teacher comes into your home with lots of different toys and ideas to try. They incorporate all things that the other therapists are working on. Our paediatrician told us of portage even before Kian was diagnosed. When the diagnosis was made, I made a phonecall a few weeks later and asked him for information on portage. He then told me it wasn't a well established service in our area. This was confusing as he spoke highly of this in previous appointments. I came off the phone, straight onto the internet, found a contact, and then emailed a lady to do with portage. The next day she replied, came out the following week and has been Kian's portage worker ever since. At first she came out weekly, more recently it has been every two weeks. Now it will be once a month as Kian is doing more sessions at nursery. Once nursery is full time the portage will stop. This is a lovely service, if you make use of it how you want. They generally have information of events happening and will loan out their toys if required.