Monday, 28 October 2013

My own top tips for free portraits and weighted quilts

My last post was a link to a post from the  National Autistic Society (NAS), retweeted by Netbuddy and it was the speech that a women gave about her brother who is autistic with learning difficulties at the launch of Push for Action campaign. The campaign is to push for more support for people with autism. There is more on the campaign on the NAS website. Netbuddy is a useful website with handy tips, and its merging with Scope shortly.
Speaking of things to know about I've met a woman who makes weighted quilts and she made one for a friend of mine. Weighted blankets can be good for children who have difficulty sleeping and for those with sensory difficulties. They are all hand made and if it's something you were thinking about then I recommend you check out Weighting for Sleep. I've lost her business card but she can add her details in the comments below.
And finishing my recommendations, another friend has had free professional family photos through a new charity;

Tuesday, 22 October 2013

"I want him to achieve his fullest"

I've just read this great blog post and I'd like to share it. A woman talks about her brother who has autism and special needs

Saturday, 12 October 2013

A week of dentist trauma, possible concussion and then swimming antics

Well this has been an emotional roller coaster of a week!

Last week I had been offered a dental appointment for mid-week. However, after a terrible weekend for Seth (and us!), I phoned again on Monday and attempted to get a sooner appointment. I succeeded on getting us in on a cancellation Tuesday afternoon. Craig took Seth.

The dentist is the dental department of Isebrook Hospital in Wellingborough. They visit Seth's school once a year  and have seen Seth twice there, and I have taken him in to the hospital before and seen a lovely lady dentist. By their own admission they are experienced with receiving clients with special needs. & yet the dentist that saw Seth on Tuesday clearly has no idea what he's doing. He took one meagre look into Seth's mouth and announced that his teeth were probably all decayed and that they might well need to be removed, obviously under general anaesthetic. When Craig queried this, he then admitted that the discolouration he saw may be that Seth had just eaten his lunch and referred him to a specialist. On receiving this news from a rather shaken Craig, I initially took it pretty badly. 1) what the hell? I've been cleaning his teeth most nights for the past couple of years 2) oh my god what pain must he be in! 3) oh my god we're those kinds of parents that let our child's teeth rot and need to have them be removed before he's 6 and 4) how on earth is he going to eat and ever learn to chew while he waits for his adult teeth to come through?!!!!! Then after further discussion with Craig that night, I just got angry. There was still the fear and worry but mostly I figured the dentist must have been wrong. We had a follow up appointment booked for Thursday so we wouldn't have long to get it resolved. For Seth's part he calmed down and actually spent that evening and night sleeping peacefully.

Wednesday took on a whole new angle. At 1pm I got a call from school because Seth, who was sitting freestyle on the floor, had got annoyed because he wanted to eat the cakes they were making in class and threw himself backwards hitting his head hard on the floor. There was no school nurse around and his teacher was worried about possible concussion and so called. I liaised with Craig and he travelled into school whilst I left work to meet them in A&E. In the meantime the nurse had arrived, shared their concern and then phoned for a paramedic because Seth started fitting. Craig arrived to find the paramedic giving Seth oxygen but after some food and a ride in an ambulance Seth returned to his exuberant self and we didn't spend too long in hospital before a rather pale but otherwise healthy boy was allowed to go home.

At this point I think I should mention that Craig is home because he's signed off from work with stress!

Thursday we went back to the dental department. This time we saw the nice lady dentist that I had met previously. She had a very thorough look in Seth's mouth and said that all was healthy. It turns out that whilst one tooth is coming through, another front tooth is wobbly and that it's also likely that some more molars might be starting to come through as this all usually happens about the same time, around the age of 6. She introduced us to the team who go into the schools and left us to make 3 monthly appointments so she could keep an eye on Seth: it's possible that his small head may cause problems in the future if there is not enough room for the teeth to come through. She also explained that calpol does not help with tooth pain at all and to just use ibruprofen.

So we left mightily relieved and today I spoke to a friend who had a very similar experience to us; she also made an appointment for her son at the dental department because of their experience with special needs. The dentist she saw also spent scant time actually looking at his teeth before diagnosing decay and that they would have to be removed. After a very anguished time, they then received a contradictory report from a second dentist who told her his teeth were completely fine. I need to find out the name of the dentist we saw and doublecheck it's the same man. Then I feel a complaint coming on. I feel I should be more outraged about all this - it's likely that there is some dentist giving out the most awful, completely incorrect information, traumatising parents. Is he just an idiot? And how is he still practicing? But the truth is that we're just so relieved that Seth is okay and we've got so many other things to focus on...maybe that's how they get away with this stuff?

The week has ended on a real high though. Seth has slept well all week and is in much better spirits (and so are we!). Today, Craig swam with Seth at school. Seth swam completely unaided for the width of the pool. He lay on his back, kicking his legs and kept his head above the water and laughed his head off. Fantastic! I'm so happy Craig got to experience this but I'm also very grateful for my brother in law, Rob, who has volunteered to swim with Seth almost every Friday. Without him Seth wouldn't have swam as often has he has and wouldn't now be swimming unaided. 

Friday, 4 October 2013

Teething troubles with our new Occupational Therapist

I need to find the time to blog more frequently - I've got so much stored up to say!!!

So, we're definitely taking Seth to the dentist. I'm making an appointment later today. We had a week of calm but now that's over. It has to be his teeth - I finally found someone whose son also has pain when his adult teeth come through - so I need to get them checked out.

I had quite an unbelievable telephone conversation yesterday. We hadn't heard from Seth's OT (Occupational Therapist) for a while. She came round at the end of the summer holiday to review Seth's new seating and I had explained that it was causing us problems. It's all wood and the head rest has no padding and Seth just keeps slamming his head back onto it. Plus the tray is concave (I think that's the right word; it has a half moon cut out of it, I suppose so there is room for the child to grow?) which means that there's a big hole for all his food to fall into his lap and for any toy I try to put in front of him, to roll down. She had a look, removed  the head rest completely and said she'd get the rep to come to offer solutions. I also asked if we could upgrade from the potty chair to something that attaches to the toilet as his balance was so good and he was getting too big for the chair. She said that was an easy fix as she had a product in stock.

However, I didn't hear anything until yesterday when a new OT phoned to introduce herself. Our old OT was on secondment and her workload had been shared out. Now, I work an hour from our home town  Monday-Wednesday and then from home the rest of the week. Seth is at school every day and Thursdays goes straight to trampolining after school. So the only day we can have appointments is after school on a Friday. This is quite limiting, I realise, but our OT has been with us for a couple of years and knows this. It was always a problem because her working week didn't extend to a Friday so we made all of our appointments in the holidays. So why are we given a new OT who also doesn't work Fridays and isn't working this half term?! Plus she knew nothing about the rep needing to come and see Seth's chair or anything about the toilet seating. She actually asked if she could come next Wednesday and when I said that not only was I at work but Seth was at school she asked if I could keep him home from school that morning.

Needless to say she won't be coming next Wednesday.

Onto some nice news, now. We are back in print in Country Walking magazine! They have printed an update with a lovely photo of Seth in his new buggy. There are lots of walking opportunities in this issue and to celebrate I've started a new walking blog called Walking with Seth. I'm going to be tackling different routes to test their accessibility for both wheelchairs and 'all terrain' buggies and my first one ended in disaster.

Finally, last week I secretly video'd Seth. In this video, which is almost 3 minutes long, Seth sits with a couple of toys in front of him and some desk bells. He spends some time thinking about it and then does the most amazing thing with his hand. Keep watching,'s worth the wait :)