Katies Paediatrician Appointment

Quick update on Katie…

We got to the child development unit and immediately bumped into the Portage manager who has been so lovely. She was really pleased to see Katie and told her colleague who we were… she was lovely too. She said she had typed up all of Katies notes the other day and commented on how lovely it was to actually meet her.

The peadiatrician was very friendly and put us at ease straight away. He explained that she had been referred to him because he often assesses children who dont seem to tick the right boxes for a clear diagnosis.
He asked us LOADS of questions about how Anthony and I were as children and then about how Katie was as a newborn. He was very interested in the fact that she was always a very unhappy baby and how the best thing to stop her crying was to just put her down. Cuddles never had a calming effect on her, quite the opposite.

We spoke about her little rituals and how it is now part of all our lives to just get on with it and go along with things. We can never just have a kiss from her for example… the order has to go “Kiss, cuddle and nose”. If we do not say the right things at bedtime (Night night princess, don’t turn the light on, I love you, See you in the morning) then she will cry and be very unhappy until we go back and say it.
Some of the things he asked us we found ourselves really agreeing with. “Does she spin round alot?” was one. She spins round and round until she falls over and then does it again and again. “Can she cope with loud noises?”. No, she often puts her hands over her ears and shudders. Playgroup have noticed this too.

He also asked if there is anything she does that suprises us for being advanced for her age. Katie knows all her colours apart from silver and gold. She knows numbers and also some letters. She can remember a, c, e, i, m, o, r, and w. She doesnt use them in context or anything but she knows the letter and remembers it so well.
She can draw a person with eyes, ears, nose, mouth, hair, arms, legs, fingers and toes. She is beginning to write her name too.
I know Robyn could do none of this at this age.

He ended the appointment by saying yes, it does look as though there are some autistic tendancies there and it warrants being investigated further. She will need to have some blood tests done to check all sorts of things including her thyroid levels etc. They will also look at her DNA and make sure everything appears normal.
The blood tests will need to be at the hospital, we have to wait for an appointment for that.

All in all it was a very good appointment. Lovely to have another professional tell us that we are not imagining things. We still have alot of people look at us very suprised when we tell them she has all this support. Alot of people do not realise that Katie is any different from any other child… they just think she is naughty which is incredibly frustrating for me.

She was a really good girl at the appointment and then proceeded to have a mega strop in Asda on the way home lol.

Best of 2009: Challenge

The biggest challenge of 2009 in general has been Katie.

As I mentioned before, she is more than a handful. She is like a whirlwind. We call her “Springer” as we were once talking about where we could meet up with a friend and we specified it really needed to be somewhere that Katie could have a good run. Our friend said “You talk about her like she is a Springer Spaniel!”, we replied “But she is!”.

Her behaviour has been well documented in my blog. She has the ability to make me cry from sheer frustration and exhaustion. She is like the little girl who had a little curl right in the middle of her forehead… you know the one. When she is good she is very very good but when she is bad she is horrid!

Now though we are getting the help and support that she needs. In April sometime she will go to the Child Development Unit and have a full assessment done. In January we have an appointment with a paediatrician who looks into genetics and a whole load of stuff in children who have extra needs but it is unclear what they are and what the reasoning behind them are.

Our portage worker, Janice is wonderful. She is so affirming and supportive. Hopefully with all the help we will get 2010 will be a year where we figure out how best to help our little princess.

Katie: An update

Yet again I have copied this from an internet forum where I have lots of wonderful, supportive friends. I need to document the progress that is being made with Katie and it might be of interest to others.

Today was pretty horrendous

It started with attempting to get her to playgroup this morning. She screamed as soon as we went out of the door and I had to carry her the whole way there kicking and screaming.
When we got there her keyworker had to peel her off my leg. I left to come home again in tears.

When I picked her up she did the same thing the whole way home. Got indoors and she threw juice all over my OU course notes, kicked me, spat at me, pinched me and threw anything she could get hold of.
I put her in her bedroom for 5mins to calm us both down as by this point I was in tears and totally losing my rag with her.

Janice, our portage worker, came round just as she was calming down and played some games with her before working with me to do a general assessment of her. It’s totally all over the place. On some sections of the forms she is quite advanced for her age, on others she is very immature. There was no one area of learning that is “conclusive” on what needs working on.

Janice said she thinks I have the “patience of a saint”. She said it is clear for her to see I am struggling but she doesnt know what to say to help. She said anything she would normally suggest as a strategy to parents I am already doing.
I told her my worries that people think I’m being melodramatic and attention seeking as they dont see this side to her and she said she totally understands why I feel like that. She reassured me that although to some people I might come across as a “Needy parent” I certainly am not needy for no reason. She said “You are a parent in need of support not because you do things wrong, but because Katie is a very very demanding and difficult child”.

Janice is going into playgroup next Tuesday to speak to the staff and observe her there. At parents evening tonight I had it confirmed that she is good as gold there. Playgroup are really great. Her keyworker loves her to bits (which is a relief, I do worry that people dont like Katie).
If Janice feels that she is fine at playgroup then she will just concentrate on giving support at home. She doesnt quite know what support that will be yet but she is speaking to her manager (the person who came and did the initial home visit) and ensuring that we are not left on our own.

In the mean time I have asked playgroup if there are any more sessions that Katie could do. I want to increase her to 4 full days. I’m feeling a tremendous amount of guilt with this but at the end of the day if she is happy there and not at home then I need to go with it for my sanitys sake!

When Anthony got home from work I escaped to my mum and dads house for 3 hours! I was at the end of my tether with Katie. He fed the girls, tidied up, cooked mine and Anthonys dinner (a yummy beef stroganoff) and then put Katie to bed.

I love that man  

Well done if you have got to the end of this!

Health

Robyns tests went well. The radiologist said there does seem to be a slight hernia which would explain alot of her symptoms. We are just waiting on another test now and then a follow up appointment. She was a superstar having the test done. She had to drink quite alot of the barium and said it tasted horrid. She understands it is a means to an end though.

I have been to the doctors for some advice about losing weight and to raise my concerns about the fact we have been trying for baby number 3 for 18mths with no joy. I have been referred for tests as he wonders if I might have Polycystic Ovary Syndrome (PCOS). Yesterday I had blood tests and am now sporting a huge bruise on my arm. I have an appointment in October to get the results and to discuss what happens next.

I have copied most of this next bit from my lovely parenting group that I am a member of…

Today I had a really great conversation with Heather, Katies speech therapist.
She said she is thrilled with how Katie is coming on with her speech. She was asking how playgroup is going and wanted to discuss what we do next.
We both agreed her speech is not such a concern now… its just a case of practise which will come with being at playgroup. She told me she has concerns about Katies listening & attention skills. I said I do too.
She has had hearing tests and we know that she is hearing everything no problem. Katie is stubborn but it goes a bit further than stubborn. She has firm mindsets and once she is “on one” then it is very difficult to get her out of it. 

I am really at the end of my tether. I really do need some more help with her. The way the speech therapist spoke it sounds like she has spotted the problem and recognises that it is a bit more than the normal terrible twos. She said that when she has observed her she can see that no matter how hard I try she just does not listen.
She said she is concerned that if Katie carries on in the way she does now then it will get too out of control.
Heather said that she really feels for me. She said “You are great, you are doing everything right and Katie is lucky you are her mum”. That made me feel alot better about it. It is nothing that I have done. Katie is the way she is because she is Katie… nothing to do with my parenting.

SO… I am meeting with Heather next week to go through some forms to get Katie referred to the child development unit. She will get help with her attention and listening skills and hopefully more help at playgroup. They will go in and work with her there. Heather wants to carry on working with her too which I’m pleased about. Katie loves her to bits!

I am really pleased. I feel like a weight has been lifted. Katie is like a whirlwind and I am so glad to be getting the help we need.

It has been a bit of a rollercoaster week with health problems! All 3 of us are waiting for referrals to come through and tests to be completed. Hopefully I’ll be able to update with some positive news soon!

I’ll leave you with a picture of my battered arm! I am a nightmare to get blood from and always end up like this after blood tests!