Hello from Paula
Posted by
clare mac
on 7th April 2009
at 21:34
Hi, I am new to all this, website and autism, as we all were once!
I have two daughters, one nearly 6 and the other just 3. My 3 year old is on the autistic spectrum but we await, for, what sounds like, the horrific moment when she is properly diagnosed. The terms, "high functioning" etc...really horrify me, its sounds so damning and in-humane. I know this is just a label but I dread it.
I have been told by so many people that girls are rarely autistic and usually worse off than their male counterparts so I am particularly alone or so it feels.
My daughter is seeing a speech therapist and we are on the waiting list for a second multi-disc. I have met some parents with autistic boys but not girls and i need some advice and solidarity!
My daughter seemed perfectly normal and was starting to speak when it all went around her first birthday when she had a few viruses. She became passive, developed arthritis and had retreated into her own world quite dramactically.
Of course her arthritis masked the problems as doctors thought she had retreated due to the pain. But my husband and I knew there was something more. She was given steroids to reduce the swelling in her knees and at the same time she started having myoclonic jerks, not sleeping and smiling strangely to herself in the middle of the night. We were terrified and sought MRI's and EEG's, all of which were normal, we even filmed and documented every movement.
We were puzzled why they had started these movements on the steroids, so she was weaned off them and onto a low dose chemo drug to control the arthritis. Her arthritis is now in remission, with no sign of having ever been there and all strange myoclonic movements ceased and she now sleeps normally at night. Were they linked or not!
I now have a 3 year old that speaks, not fluently but she makes her needs known and is affectionate and likes to make us laugh. She was really easy to handle but now she is so clingy to me, daddy and her sister that its getting quite stressful. She hates me leaving her at nursery and although she has a key worker she doesn't really want to be there.If my daughter doesn't want to do something, its really tough. I take her everywhere and make no restrictions on her or our family, although we have far fewer meals out.
I have heard some autistic kids run off and have no sense of danger but my daughter has the opostite problem. She loves music and loves to dance at parties and will happily leave my side then but if I leave her momentarily to grab a straw in a cafe and walk two steps away from the pushchair she cries instantly with such anguish.
Its hard to know what line to take, special needs mum or not. Do I ignore clingy behaviour or put her on the naughty step if she hits etc... and do I seek professional help with her seperation anxiety and will it work on a three year old who doesn't understand abstract concepts?
Its such a puzzling thing, she could read numbers at 2 and bearing in mind we hadn't taught her, this was quite a feat. She knows and likes shapes and is good at labelling but yet if someone was to ask her name or how old she is, she is lost. She plays well with her big sister who adores her but with children in a park she will play alongside and enjoy certain things they do but if apporoached she will look away in disgust, shout or hit out.
I can change her routine, there is no problem and if there is a problem she can calm down and when it takes time I am learning to develop thicker skin when people stare in horror at her temper. She looks so pretty and is also tall for her age which makes her attractive to people who ask her normal questions, which makes it harder for her and me.
As she gets older it is becoming more obvious that her language and understanding are behind for a three year old. She has good fine motor skills but walks like a 2 year old and is getting quite accident prone. Her eye contact is great with me and the family but not as good with others.
We love her so much and I wish I knew everything and now so I can help her. We haven't changed her diet to gluten free etc...because she wouldn't have anything to eat and its dubious whether it works or not? She is to embark on some tummy osteopathy or massage and I am looking into getting help with toilet training and the seperation problem as well as getting a statement for her at school. Special school v mainstream is now a debate in our house as my daughter does learn behaviour and is much more aware most of the time now.
You can see by my ramblings that I am in need of some advice from experienced parents of boys and girls but especially parents of girls.
Anyone out there?
Posted by
Josie Barnshaw
on 8th April 2009
at 14:05
Hi Clare
I am the mother of three children, the youngest, Tom is almost 14 and has Aspergers Syndrome (which is a high functioning spectrum disorder). I also have a neice who is 19 with Aspergers, although she has various other serious physical medical conditions. My son is in mainstream high school and also came through mainstream primary school. My neice because of her other difficulties had a half and half education spending half her week in mainstream and half in a specialist unit. I think as far as education goes, you should trust your instincts and perhaps be guided by the opinion of the nursery staff who will have a good idea of your daughters capabilities and ability to keep up with mainstream education. There is also the fact that even if you go mainstream and it doesnt work out for your daughter you can always source another more suitable route. This has been the route a friend of mine had to take. Her son went to the same primary as mine but didnt cope with the classroom situation and she had him placed in a specialist unit that was attached to a mainstream school so he had the best of both worlds and could be gradually introduced to the mainstream situation. This allowed him to integrate socially with the other children.
"High functioning" is not something to be wary of, it simply means that your child excels in many areas, or at least that is how I see it. My son has an excellent memory, is very good with maths and the sciences, loves solving problems and talks incessantly on the other hand my neice does not talk very much but she is a whiz with a computer and a delightful girl. Autism or no autism your daughter will have her strengths and weaknesses just like all of us and I know you will be able to support her and guide her in the challenges that lie ahead.
Please keep us posted on how you are doing and if there is anything else we can help you with please do not hesitate to call in again.
Josie
Posted by
jeanb
on 9th April 2009
at 00:35
Hi Clare - I hear you , Im new to this too but I have a 3 yr old daughter called Evie rae and jst last thursday we got her diagnosis of autism , she is on the high funtioning end of the spectrum too , shes affectionate - on her own terms - with her family and plays well alongside other kids , until they come into her space or interfere in her play , then she can be aggressive or become distressed
She has no sense of fear and is hypersensitive to sounds and textures/feelings, just last week I tried - stupidly - to go for a walk instead of taking the car and the light breeze freaked her out so much she bolted for home and i ended up jst chasing her across roads and everything with my babys pram up on 2 wheels screaming for her to stop!!- Note to self -take the car!!
I knew from within a few days of birth that Evie was different from my other children (she is 3rd of 4) and her 1st 6mths were hell she just cried - if she was awake she was crying , if you held her she would just keep arching her back and struggling , she was absolutely impossible to bond with and my doctor treated me for postnatal depression ,of course now I know I wasnt depressed at all just couldnt cope!
Evie has little speech - but it is starting to come on quicker now so Ihave hopes that verbal communication will end up not too bad , She doesnt tend to have much facial expression so can be hard to read sometimes she also tends to flap her hands and cover her ears and bite her hands in times of stress, OT has suggested earmuffs to block out sounds and wind - but Im considering how it will be for her if she becomes dependant , Im imagining a hot day and my kid being the kid in shorts and furry ear muffs!!
Im not sure if the naughty step works -for a child who has no concept that what they did was wrong , it doesnt matter how long you give her to think about it , shes still not going to get it ! having said that I use the naughty step , but more so that justice is seen to be done by my other children and also as a physical seperation tool!
Toilet training is hard !! I bought a fisher price throne potty and it was a bit of a breakthrough moment as i discovered she was happier higher up - a low potty feels too low and unstable for her, although we are going through a reggresion at the moment - she has started going beserk ,screaming like shes terribly hurt or something and im saying what whats up tell mummy are you hurt and she shes ripping at her pants so u help her and she poos in your hand !!! NICE ! doesnt help that she will do it to whoevers nearest!
anyway get back to me as our girls are the same age maybe we can be a support for each other !
Jean x
Posted by
clare mac
on 11th April 2009
at 00:34
Thanks Jean,
'Support, sounds great! It sounds as though Evie Rae is improving with the language, is it all in the wrong order and does she repeat phrases?
My daughter Sadie has come on so much in a year and was almost non verbal at 2 having regressed around 1. Interesting what you said about knowing from birth that something was different. I didn't notice anything apart from the lack of long sleeps as a new born, which I thought wasnt right but this I was assured was "normal".
Sadie was a emergency c section due to brow presenting, she was trying to come out face first, which is impossible unless you are a cow! She was given a BCG vaccination at birth which I didn't think twice about at the time, something my first daughter didn't have as she was a natural delivery.
Sadie likes pressure on her and loves touching skin, she loves the rain and wind too and laughs in delight saying "rain". She loves music but she also hates people singing if she is in the wrong mood. She doesn't run off but has the oppostite problem and is too clingey! Wierdly she likes a party and will go off confidently and in the playground so I have to watch her then.
Sadie used to flap her hands a lot but has stopped doing that now but likes to walk with her head on one side at home like she is enjoying a different perspective . She too has little facial expression and we practice "happy, sad, cross" faces which she loves and we say "Sadie do it" and you can see its hard for her.
God, toilet training is a nightmare I am really going to give it a proper go in the summer but right now, she scared of it and I feel cruel putting her on there. Did you just decide to start toilet training her or did she let you know she was aware and ready? Sadie hides behind the sofa or ges in the other room if she does a poo. she does tell me when her nappy is near overload with wee and says "I all wet" yet she has no intention of using the loo or potty, however fetching the potty is.
You are right the naughty step is really for the other siblings although maybe removing her from the situation when she is knowingly doing something she knows I wont like, like pouring water on the floor, might work?
Are you trying any diets and how is her sleep?
All the best
Clare
Posted by
jeanb
on 22nd May 2009
at 11:20
Hi Clare - so glad you replied! I always wondered if you did , I cant use this bloomin forum - it didnt notify me you had replied and I could never find the post again - but it was bugging me so I went to the manager of the site - and she was great and found the posts for me!!! Yaay!!
Are you on face book? I have started a support group for parents of asd girls - its fantastic got so much help from them ,- add me if you are, jeanbarkley my profile pic is me by the eiffel tower!! got to go out now to pick Evie up but I'll mssg you again later
Jean x
Posted by
clare mac
on 31st May 2009
at 10:25
Great to hear from you and thanks Treehouse website for contacting me!
Sounds fantastic to have a group especially for ASD girls. I am not on face book, I need to get with this century!
Hope Evie Rae is doing well and your other kids. I have just found out that I am pregnant so going through sickness and tiredness at the moment.
I will look you up, great to get in touch
Clare xx
Posted by
jeanb
on 13th June 2009
at 00:14
O h wow - fantastic news congratulations- man i hated the tired sickness bit and it went on most of the way through for me!! Now we will have even more in common as i had to introduce a baby into Evies life too , if you do get on face book - its real easy by the way- look up my group its called " support group for families of autistic spectrum disorder girls"
Hope you subscribed so you get this mssg - if you ever want to contact me direct its jeanbarkley4@aol.com
take care jean xx
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Posted by
Paula Barrett - former Community Manager
on 25th February 2009
at 17:03
Hello,
My name is Paula and I’m the Community Manager for talk about autism. I am here to answer any of your questions about the forum, help you find your way around the site and listen to any of your suggestions about how we can improve the site for you.
We’ve invited you to the forum to use it before it goes live to the public, so please bear in mind that it’s not 100% perfect yet! We’re hoping you can tell us what you like and what you don’t like about it – please post up suggestions and comments in the Feedback and Help section.
Please start off by introducing yourself – you’re welcome to be as detailed as you like. Tell us who you are, what you do, what your interests are. It would also be useful to know what your relation to autism is, what experience you have of autism and what you’re particularly interested in.
I’d also like to know what you think you’ll be using the forum for – whether it’s getting advice on education, discussing news items or just connecting with other parents. Have a look around – there are lots of different topics. Don’t be afraid to start discussions, ask questions or take part in conversations. If you need a break we have a section for light hearted discussion in the Take a Break section.
Looking forward to meeting you all!
Paula