Little update

[dekra]

Hi guys,

 

I've had a pretty hectic few months since I last posted so thought I'd give a little update on our situation if anyone is interested and if no-one is then the post is always still here for me as always to be able to review later to reflect on how things may or may not have changed and my own changing level of coping with it all.

 

We've had some positive improvements in language use with Finn, he is now making basic sentences quite regularly although he does still have a lot of learned phrases and echolalia. I can at least see an improvement - he has developed in the last 6 months and although he's not really caught up on his peers he is not any further behind them.

 

He has also started school and although we were concerned about how he would cope he's settled in quite well. He does only got 1 full day and 4 mornings per week as he still goes to the specialist language unit 4 afternoons per week. We had his first parents evening last week and were told that although there have been minor behavioural issues this has mainly stemmed from his realising that in some ways he gets special treatment and liking it so wanting more in all situations not just the ones he needs extra support. His classmates and infact the other children within the school are quite protective of him I am told and certainly when I drop him at school in the morning there is usually at least 1 child not from his class shouts hello to him (although he just puts his head down and does not reply when I am there). Because he has to leave class early for lunch before his taxi arrives for his language unit the kids in the class all like to say bye before he goes. On a positive note his school shoes were all scuffed on the toes after only a week so I take that as a positive sign that he must be out playing with the other kids at least some of the time. Am I the first mum ever to be pleased at an expensive pair of school shoes being scuffed? As expected the teacher told us he was advanced with his Maths skills but when discussing his sounds the teacher said he knew 4 out of 14 - which we thought must be poor but the teacher told us some of the other kids only know 1 or 2. We were very happy at that. The teacher with the aid of SALT have visual timetables for him and I feel they are supporting him well.

 

Some of the problems noted have been things like choosing dinner, he seems to always want a sandwich (I don't think he actually wants one he just tends to go for the option he's asked most recently) and for example last week he was asked what he wanted on it - cue him being echolalic - he was asked if he liked Tuna (he doesn't) and he said yes (he obviously didn't understand the question, I know this but they didn't) then wouldn't eat his lunch. They were planning to send the weeks menu home with him (something that should have happened anyway but hasn't) so I could mark what he does like and return it (6 days later no menu has appeared as yet, must remember to chase the office tomorrow. We've also been told he's the most polite boy in his class by far - with his difficulties it's been hard as parents to teach him things but at least we've succeeded in teaching him manners

 

Although we are only 4 weeks into the school term I have had a phonecall twice to go pick Finn up from school, once at 10.35am because he had fallen asleep in class at 9.10am and once because he was very very tired. Both times he's been either coming down with or recoving from a mild illness but he was no more tired than he can be frequently due to is poor sleeping patterns. I find this slightly frustrating as if they send him home everytime he is tired then I will spend half my life trotting up to collect him.

 

At home we've had worsening of his negative spirals, he seems to get caught in a loop eg "Do you want to wear the red jacket or the black jacket? "Red jacket" we get the red jacket on "no the black jacket" so get the black on and he wants the red. It's more complicated than it sounds - it sounds like he's purely being naughty but there is a very real distress in the confusion and loop he gets into. Another thing is meltdowns, he's had minor meltdowns in the past but he's recently taken to absolute full scale meltdown. My husband has him in the shopping centre a couple of weeks ago and he was grumpy because he wasn't allowed on the escalators as hubby also had our 2 year old daughter in the buggy so he was a bit worked up after being refused a go on these but soon after he kept talking about 10p and saying something was lost. Hubby was confused as Finn hadn't had 10p and hadn't lost anything. Things got so out of hand that he had to manually pick him up (whilst struggling with buggy too) and get him to the car. This was a fullfledged kicking, screaming, hitting rage. Hubby got him into the car and seat belt on and full for 10 minutes Finn was still thrashing around thumping window etc. I telephoned about 10 mins after he calmed down, they were still in the car as hubby didn't feel it was safe yet to drive off and I spoke to Finn and he sounded like he was talking a foreign language, was over an hour later before he was talking in his normal limited fashion.

 

I finally posted off DLA renewal forms yesterday. His renewal is very soon (12th October) but I've been chasing report from his March assessment and ADOS in early May since late May but only managed to get them a week and a half ago and only got the copies of the most recent schedule of growing skills scores last Thursday. So since then I've been going back over the claim info and updating it to ensure it was accurate and up to date. The paper claim form I filled in mostly was filled with "see extra info" and I put all that on to a word document that I printed and added into the claim envelope. The extra info pages had a word count of over 8300 words and I provided them with 7 different reports from various sources. So now the worry begins that I am once again going to find the decision maker doesn't read the forms and dismisses the renewal claim the same way the inital claim was. Looking at it from as an unbiased opinion as possible given that I am actually very very biased I do feel he still rates HRC as he does still have extensive needs both daytime and night time plus now he has turned 5 then he should be entitled to LRM as he still has no concept of stranger danger or awareness of danger in anyway and his unpredictability when out (after the recent meltdown in the shopping centre he needs one to one care when out and about for sure). As always we shall wait and see what they decide and be prepared to appeal.

 

So both good and bad things recently but in general I feel a lot more positive than I have for a longtime. I am hoping I can post an update again in a few months or a year and once again see progress.

[justine1]

Hi Dekra

 

Glad to see that you feeling more positive and great that the school are trying,although annoying that you have to fetch when he is tired. I had to fetch Eli today and its his first week(day 4) of school grrrrr!!! I know how you feel regarding the "jacket" incident I have had this in the past,it does get easier. It happened during the jubilee I had bought Sam a polo shirt blue,red and white and he decided he did'nt like it....two months later he notices the shirt in the wardrobe and said "thats nice where did it come from? Can I wear it?" I give up! I try not to give choices though,I usually chose his(and Dan's) clothes the day before and sometimes he will ask for something different but I tell him once he decides thats it. It does'nt reduce the meltdowns but it does help the confusion when making a decision and saves time on the day.

 

How is your course going?

[dekra]

Hiya Justine,

 

Thanks for the reply.

 

The jacket is just one example of what we call his negative loops, another is when getting him dressed (at 5 he still needs a lot of assistance to dress) I try to promote his independence but we get into a lot of loops where he wont do what I've asked so I try to do it then he wants to do it himself so I stop tell him to do it then he wants me to do it. Very frustrating for me and getting angry at him only makes it worse. I have to build time into the morning routine to allow for me walking away to break the cycle and going back and getting on with the routine. Similar things happen with food too plus other things I can't think of at the moment. We are coping and learning how to put strategies into place that whilst they don't remove the problems they limit the effect on the family. We do have to make major adjustments as I'm sure everyone else with children with similar difficulties does but different has just become normal now. As for choices I am trying to limit them especially if I don't have a lot of time but I sometimes forget and I don't want to take all decision away from him.

 

I have just started 2nd year of my course this week Enjoying the more advanced lectures so far, yes it's harder but it's much more interesting so I am hoping that will be the same for the rest of the year. It's scary though, I am not on placement again until January but I am going to be expected to know things.

 

How's the little un? Must be getting big now.