On Saturday we received a letter from the chief exec at children's services. They acknowledged our letter and said they had passed it on to the Director of Operations and that he will advise us 'on the best way forward in your daughter's case.' This looked promising as it was a very fast reply compared to the 2 months it takes our paed to write and send a report!
Monday I got talking to another parent of a child in S's class. (Her older son is on the spectrum.) We have spoken before. I told her about what was happening and found she had the same Paed and had no problems but, has heard of a lot of people not getting on with her.
On Tuesday I got talking to another mum who is an OT. She asked how things were going so explained about the ADOS test and our concerns with paed. As soon as I told her our paed's name her face said it all. Her words were a little restricted by her profession. 'oh yes. I would say you are definitely doing the right thing. I don't know what it is with her, she is a lovely lady but many just don't seem to get on with her.' She they introduced me to another mum who's son is on the spectrum (the road S's school is on also has a special needs school who they work with from time to time). Had a little chat with her and she told me she really had to fight for a diagnosis and it wasn't given until her son was 7, and finally seen by CAMHS (she had been told over and over he could not be seen by them before that). She gave me a good piece of advise 'Your daughter WILL get things, but ONLY because you have pushed for it. Nobody likes being a nuisance but it is the only way to be heard.' Words like that help keep that fight burning in me but also sadden me. Why should we have to fight so hard for what our children deserve? Regardless I will fight on for S no matter what it takes.
Wednesday I started to realise S may to be using her 'pretend, imaginary, horse. Strawberry' to help her cope with the stress of school mornings as when 'riding' her she is happy to skip along to school and it was Strawberry who wouldn't let Skye into school (a different teacher for the day). We did pass a car that put it's reversing lights on and revved loudly just as we stepped onto a road and this caused a little wobble. 'I hate that noise. I don't like noises like that.' but she quickly reverted to talking about Strawberry again.
When I went to pick S up I could see her spinning while stood in the line waiting to come out. She bumped into the boy behind her and I could see them bickering I watched on hoping teacher would notice (her inexperience with S showed as she didn't). S continued to spin until she reached the front of the line. Just lucky she didn't lash out in full view of all the parents. All the way home S kept pausing to spin and as soon as we got home she paced around in a tight circle in our kitchen. I came down to her level and asked her to come to me. She almost threw herself into my arms. Into her ear I said 'What is the matter sweetie?' no response. 'S did something happen at school? Something that made you sad?' 'Yes mummy I fell over and broke my leg.' she answered. I just said 'it's ok hunni.' and let her say over and a over 'I broke my leg and it really hurt.' I know she hadn't 'broken' it but does over react to little bumps and remembers them for a very long time. I encouraged her to head upstairs to change. When she got up there she just lay on her bed face down. I asked her to change but no response. After about 5 minutes she rolled onto her back, and just lay there rubbing her iggle piggle on her lip (as she always does). Hubby persuaded her to change for dinner after about 20 mins. It was hard to see that she was doing these things that showed her stress but it took the right questions to get answers. I guess I can be grateful I could pick up on the signs.
We went on to have a nicer afternoon S started to sing 'Does anybody care about us.' So I asked hubby if he knew where it was from, as I had heard her sing that one line a few times before, turns out it's from a The King Blues song. So she is developing a liking for punk rock as well as Metal and a loving for P!nk.
A few moments later E noticed some pigeons on a roof, there were 4 of them, so S declared 'They must be having a meeting.'
A short while later the two girls started throwing a small chick to each other it was lovely to see them playing together as it always is, so I just sat back and watched. It got even nicer when E climbed up on the sofa and S moved closer and asked for a hug (something we have had to teach and still have to remind her of) then hugged her stroked her hair and kissed her on the head saying 'Aww you are so cute E' She then looked at me and said 'Mummy isn't she cute? Are you proud of me?' Not only did she look me in the eye as she began to talk she held my gaze the whole way through the sentence! This is a huge thing for us as S never gives eye contact. She tends to flick her eyes in my direction to see if I am looking and then look away or shift her eyes about a lot. I felt over come with pride. I got a huge lump in my throat and could feel my eyes watering. Not many will quite understand this but I can tell you it really was a lovely feeling to get that 2/3 seconds of eye contact.
Once E was in bed it was time to give homework a try (it had been unsuccessful the night before) As i went to fetch S's school bag I said 'Sit on the table.' She paused walked over to it and perched her bottom on the edge and said 'Do you mean like this?' 'No sorry at the table hunni on your chair.' I told her 'Well you said sit on the table.' she replied. After establishing I had said the wrong words we got homework done with only one tiny wobble and even had her read her book with no help.
Thursday we received a letter from the Director whom our letter had been passed to. In it he wrote he had spoken to the Clinical Director for Paediatrics and the Clinical Director for CAMHS, it has been agreed that CAMHS will offer S a second opinion and we will relieve an appointment from them. To say I was happy would be an understatement, I felt like doing summersaults and screaming the good news from the roof tops. I decided that on second thought this was perhaps not the best idea I had ever had, as I cannot even do a hand-stand never mind a summersault and I may well get sectioned for screaming babblings from a rooftop.
I went to collect S from school to find she had all her happy stamps (which means she hadn't pushed, pinched, hit, snatched or touch another child inappropriately ALL day). Which was another thing to keep the smile on my face.
As we walked home a council worker was driving his big tractor looking grass cutter along the path, towards us, cutting the grass along side it. Skye grabbed my hand and tensed. I told her it was ok because he had stopped to let us by. We just got past with ears held when she froze 'I don't like it mummy. It's scary mummy. Too loud, too loud.' I told her if we kept walking we'd soon be away from it. She kept looking back and then screamed 'MUMMY' she was rooted to the spot and grasping at me and looking very scared 'Mummy it's coming back.' I told her it wasn't. I was wrong as I looked back again it had turned around and was slowing coming back in our direction. 'Mummy it's coming back.' I tried in vein to get her to keep walking to get away from it but she wouldn't budge 'Mummy it's coming back'. I picked her up and walked as fast as I could with a 4 1/2 year old lanky 3 stone child scrambling up me. Crying and ranting on about the grass cutter. I sometimes amaze myself the distance I can walk like that as at the time I feel so weak. We got over the main road and I noticed the grass had been cut and used this to explain they wouldn't need to cut that grass and she walked for the last minute home (after being carried for 5!) She was still talking about it when we got home and, as she always does, was looking around the kitchen and noticed the kiwis on the side. 'Why have you got plums? I don't like plums. Why do you keep buying plums?' I waited for her to stop to tell her. 'They are not plums. They are kiwis. You do not have to eat them. We have other fruit.' She then clapped eyes on a little chocolate egg I had got her to share with her sister and went on a rant about how she needed it (not even knowing what it was).
Again when upstairs S just lay on her bed staring. This time I just popped her clothes on her bed and left her alone. After 20 minutes she came downstairs and cuddled into me. I noticed she had raised skin that looked very red on her hip. I had noticed a tiny area of skin like this on her legs in the morning but thought nothing of it. I asked her if I could look at her stomach and she had the same rash on it and her legs were now covered in it. First thought was the glass test. I could still see the pattern of the raised skin and decided instead of consulting google I would go straight to the doctors and ask to see the nurse (I knew if I called I would be fobbed off and I was taking no risks). I asked S if the rash hurt and she said it was itchy so I said 'Well we are going to go for a little drive. We will go to the doctor. Get him to have a little look at it.' She seemed happy enough to do so, as long as iggle piggle could come.
We were sent to the nurses when we got there. I had literally just sat down and warned S that the nurse may need to touch her to have a look when we were called in. The nurse looked at it and then went to get another nurse to have a look. They both said it looked like she had rolled in nettles and were really unsure what it was. They asked her Dr and when they saw he was no longer in the surgery my heart sunk a little. There is a doctor at our surgery notorious for brushing serious illnesses under the carpet (how he has not been struck off do not know). Luckily they said a different Dr and said they would go speak to him. We had a bit of a wait and S was beginning to get very fidgety and wanted to look at everything in the room luckily sitting on the observation bed had just held her concentration as he walked in. He was very lovely and apologised for the wait. He took one look at the rash and said 'Yes that is Urticaria.' (also known as hives) he asked the nurse if she had seen it before and then went on to explain it was an allergic reaction. We were sent home with a prescription. Luckily Piriton 'tastes like toothpaste' so we won't have a repeat of the performance we had last time she had antibiotics (yes I am aware piriton is not an antibiotic).
Later I let S pick something to watch, should have known it would be Thomas and the Magic Railroad! Just as I finished putting E to bed I heard the ending music and knew I would come down to find S upset. S never reacts to sad things happening in a film but, for as long as I can remember, she always cries when a film ends and it takes a long time to calm her down. She kept asking to watch it again and wailing when told no it was bed time. We finally reached and agreement that she could watch Thomas again on film night (which is every Saturday, where she gets to watch her latest favourite film AGAIN, and I get to have almost an hour of cuddles, until she starts to sensory seek on me and I have to be replaced by a large soft toy).
Today we have again had all 4 happy stamps in school.
S's rash comes back when near time to take meds but it is far better each time.
This afternoon we had to sit in half an hour of traffic to get S to Orthotics appointment, in and out in 5 mins and back into another half hour of traffic! Oh the things us mum's have to endure. S started to rock on me while at the appointment and do some loud throat stims, she didn't really speak in the car. As soon as we got home she was jumping about and charging into things so needed time in her room to unwind. Other than that not much to report today. S is happily settled in bed with far too many soft toys and Piggle and I am chilling with a cuppa and some lemon cake ready to take on the weekend.
No comments:
Post a Comment