Awaiting appointment

Hi, please don't apologise, I fully understand how time disappears.

Thanks for your kind words, I had difficulty making my husband and his mum believe anything was wrong, but there was, and I was proved right in the end, unfortunately none of them found that out.

I will find those links for you, I was struggling to find them last night and my house is still topsy turvy with loads of stuff in storage from when we moved, so I have no idea where the hard copies are.

Ratio 1:4 girls : boys are diagnosed.

Before you see this peadiatrician, make sure you have loads of notes.  I had to work doubly hard as everyone put the behaviour down to emotional stress from aged 3 due to her dad, however I was able to remember loads of things that happened from birth.

I could never change her nappy, she was off like lightning.  She hated the car, making herself rigid as a board, I had no way of getting her in at all.  She did jigsaws from very early and by three started was board of 100 pieces, we had to get bigger ones, she does 500's on her own now.  She lined things up, didn't play like other children, hated shops and ran off everywhere. (Amongst other things).

When you go into the meeting, you will forget, trust me I forgot everything.  Write it down so you can let them know.

You are not a terrible mother, just trying to understand your child to ensure the best care possible.  There is nothing wrong with that.  By recieving a confirmed diagnosis, you are able to offer the best support.  I am learning and trying new techniques everyday to break down yet another meltdown.

Keep plodding on, it took me two years, but I proved it in the end, we received confirmation of ASD on Aug 31st.  I am now aware of other things like sensory vestibular and PDA which I think my daughter has which are linked to Autism.

I will let you know as soon as possible about the links.

Take care,

CJ 

Hi there

I am sorry for such a late reply to your message! Time just goes these days and I find I'm always trying to catch up! I'm so sorry to hear of all you have been through! You have had a rough few years and so has you daughter! I cant begin to imagine! My sincere condolences to you. On top of everything you persevered and now your child had the best possible chance of getting the help she needs! You are a true inspiration and daughter is very lucky to have a mam like you! 

We still haven't had an appointment yet. The health visitor was supposed to chase it up so I will wait a few more weeks and see! I still keep going hot and cold, and I find myself conflicting with myself in my head! I just go round in circles. if you could pass on the link it would be very helpful. I have been looking up on the Internet and it's such a new thing for girls. I mean I know stats are not reliable but I've read some stories where professionals didnt even consider autism just because the child was a girl. One was 21 before she was diagnosed and suffered terribly during her teenage years! I don't know what to expect from this awaiting appointment. I think we are supposed to meet with a paediatrician and they will then decide whether we should be refered to a team for further observation. After reading what I've read I'm now  more worried! My mother keeps telling me there isnt anything wrong, which makes me feel like a terrible mother for even considering it! 

I hope your daughter is doing well! I know this time of year must be confusing and routine is hard to keep with all that goes on. Sorry for the late reply x

I am glad you found my post helpful, and also that you have chosen to talk to the teacher.  They can only help you if they are aware of the facts.  You may find her behaviour sky rockets as there is a big change from 3 hrs a day to full time. (can you tell I want to be a teacher?)  This settles down but can be frustrating for a few weeks (we get it every time she finishes school for the weekend, end of terms, back to school to mention a few!).

Write a list down of any queries you have, like techniques they can use in school that you find helpful. My daughter during a very difficult time (my husband passed away in May), had jigsaws, colouring in books, photographs and a latch hook rug at school in a special box.  Whenever times were hard, she would do one of these and return about 5 / 10 mins later to the class.  Also ask what techniques they can use to help that you may not be aware of.  I say write it down, because, as soon as you go in, alot of teachers try to have you in and out and you can forget what you wanted to ask (I still do it now, so should listen to my own advice!).

If you are interested, I can find those articles for you, I found them extremely helpful as they showed me traights that my daughter had, but I didn't know that it was an autism idicator.  When I did my questionnaire the doctors sent over, I filled it out, but be very wary, it is designed for boys and they present the behaviour differently.  if you think you have other symptoms (as I did) that are not on there, write a detailed letter to send back with it.  I found this helped.  I had two even bigger hurdles than fighting the 'girls' autism part.  My mother in-law passed away in 2014 (my daughter idolised her!) and when my little girl was three my husband had a heart attack and triple bypass (this was very serious and he took a whole year to recover, only to be (a week later) diagnosed with cancer.  All of this was seen as the actual cause of her behaviour and I had to really think about her behaviour prior to all of this, when life was 'normal' so to speak.  We had issues changing nappies, getting in the car, being in the car for more than 30 mins, coming home from nursery, never joing in with other children, lining things up, being dedicated to jigsaws and not doing role play with toys. I wrote a letter about all of this, and spoke to speech and Language, who despite not really being helpful in her needs, did back this up with a 3 page letter to the forum which really helped our case.

Anyway, let me know if I can offer any help in any way.  I could have really done with this site when I thought I was the only one going through all of these things prior to diagnosis.  Good luck, and lets hope you get the right diagnosis. 

CJ

Thank you very much for your reply and input. It's given me a lot of insight! I have no idea what's ahead of us. I'm not entirely sure whats going to happen with the assessment yet and of course there will be more to follow! I have decided to talk to her teacher because I do feel it's important she's aware of what's going on especially if things may start to happen at school! She was only at a play school before for 3 hours a day so i don't think the were issues with dealing with behaviour. It would be good to hear her thoughts on how she interacts in school. She has arranged for a meeting next Monday so we shall see what she says. I have heard that it's harder to diagnose in girls so that's another worry but at least the ball is rolling now. Thank you 

I cannot work out why your health visitor advised this, other than so the school can offer a non-judgemental opinion.

However as a mother of an eight year old who was diagnosed at the end of August this year, I can offer you some things I have picked up along the way - but please note, these are only my opinions and not what you should or shouldn't do.

I personally would tell her teacher. You have learnt ways of dealing with / managing some difficult behaviour, and if she requires her own 'space' to process tasks etc. the teachers would only benefit from this information and you are less likely to be called into school for having a disruptive child.

I have been lucky in a way that my daughter is a mouse at school and monster at home.

Our diagnosis took about 2 years to obtain, I thought she was aged just one, but kept talking myself out of it until she was about six, when I did loads of research.  just to warn you, it is very hard to get a confirmed diagnosis (apparently) for a girl as they can 'mask' the normal indicators.  I read an article on the NHS website and one from the SENCO magazine from the schools.  They had very interesting information regarding research into girls autism and the differences between symptoms of the boys.

I think you are right, the teachers may judge her, but they should pick up that she has differences that they may need to address, however, they are just as likely to think she is being naughty.

Nobody picked up that my (Jane) was autistic as she was so quite at school although they did notice she had hearing issues which I hadn't noted.  Even a former Senco who taught her for two years thought she was fine, and I was worried over nothing! She was 5 / 6 and still couldn't add 1 and 1 sometimes she could rememeber, but most of the time she would guess.

Her next teacher and TA were and are still both amazing, they understand her needs and she has progressed this last year really well academically, but is still behind.

Go with what your gut tells you, I listened to mine, and ended up with a confirmed diagnosis, and I am relieved as she will have support now. Also I told her and she was over the moon becuase I think she had started to realise she was different and there was a reason.  I seem to have picked up that many people on this site are relivied to have a late diagnosis rather than none.  It has explained their difficult lives.

You will be in for a rocky time, but we all go through that, and to be honest I am glad they were so thorough as I know she IS autistic, and that I wasn't a bad parent.  If my children were the other way round, I would have asked for a diagnosis several years earlier, being the first there is no status quo, everything is guesswork.

Any way, good luck

CJ