Ladies Camera Club

19 Jun 2010

Its all making sense

A blow out has been long overdue, from me, with our quest to find the matter with our beautiful girl. Im quite proud that Ive kept it back until now as things seem to pretty much be on an even keel. I can't apologise for my blow outs, they feel so much better when they have been written and hopefully, someone - somewhere, may identify with it and help them too.

So - Its all making sense? Why? Well, right now, I feel equally aggrieved and delighted in the same breath when I say that we are almost certain that Ellie's problems may no longer be problems. In effect her problems could well be assigned to a syndrome and when you have a syndrome, its no problem! Its an answer.

For a few years I have been overly concerned about Ellie's behaviour (on top of her physical probs). I know for certain that other people have seen it as me being paranoid and worrying unnecessarily. But as a mum - you just know these things, don't you? You try to balance their judgement with your determination and let me tell you, it really does hurt. Ignorance far outstrips determination in my book, Im sad to say. But the hurt? Man, its an awful pain you get in your chest like a gaping hole from where a nasty explosion has ripped through your heart and you sit there wondering why it happened but carry on regardless - still hurting and still wondering when the ignorance will strike again. So let me tell you about Ellie's behaviour. Well, she is not a naughty girl and she is far from erratic or disruptive. No, our Ellie is a very quiet child, a girl who has her routines and likes them and whom loves her comforts. She won't give people eye contact unless she is familiar with their frequency of contact, seldom socialises with kids her own age (much preferring adult company - even in school). She is obsessed with facts about animals. And I mean OBSESSED. She can't solve problems really easy and finds communicating very difficult using monosyllabic answers or gestures to get her through. Aside form her physical difficulties, this is a separate problem.

I have screamed at the doctors explaining her unusual behaviour on millions of occasions (immaturity, insecurity, emotional distress from frustration) but no, they focus on her physical issues and even then that's every 12 months now. So I set about trying to gather notes myself. It has always felt it was going to be fruitless and I can see why people think Im just being "a silly" but I honestly refuse to be beaten. Truly, I do. And Im not going to lie that Ive often wondered if Ellie had a slight form of Autism but nobody has ever taken me on to that assumption. So I would put it to the back of my mind and try and ignore it niggling me. But the more I observed her behaviour and how things like understanding time and understanding a written problem were not sinking in,the more incensed I became that only I seemed to noticing it. School just thought it was part of Ellies undiagnosed physical problems and family just thought "oh, its just Ellie". Well, Im sorry everyone, but that is just not good enough. I can't say that my quest to be unbeaten hasn't left people thinking I'm bloody nuts/erratic/paranoid but now, as it comes close to understanding what the matter is, I only hope people take all that back. I really do. It would make me feel so much better and less angry. I don't mean to harbour that anger, Im sorry, but its just how god made me.

Then three weeks ago somebody mentioned Autism to me again with regards to Ellie. And I dug up my research again but I wasn't entirely convinced. I had advice from facebook friends telling me to get it checked anyway although some said that perhaps she is like she is because of her physicality. The latter advice did not motivate me one little bit but again as a mum - you just know, you know. Then all of a sudden, somebody recognised what I was saying and they said that they had suspicions that Ellie has Aspergers albeit in a slightly different form. So I rang school this week to enquire as to whether I would be barking up the wrong tree. The schools SENCO was absolutely brilliant and decided that it would be a great idea (with her backing) to seek the advice from CAMHs. The more I researched Aspergers after that call, the more I am completely convinced she suffers with it. And let me tell you, I have researched many things in the past that could relate to Ellies condition but I have never been tempted to consider any of the suggestions up until now - after 14 blasted years!

I rang a local Autistic and Aspergers group to have a casual chat about my thoughts and feelings and to also get them to affirm as to whether I was barking up the wrong tree or not. The guy that answered the phone was incredibly empathic and he could tell I was a bit nervous about the call. Perhaps its because I didn't want to be wasting his time. He asked me a ton of questions which I answered regarding Belle. And when he had finished he said I had to not to worry one bit and that I should go the Doctors for a referral for a check on Aspergers Syndrome. Of all the answers I gave he was convinced that Ellie shows the characteristics of a child suffering with it although he said that he couldn't rule out that she may have a lighter form of Austism (but that its hard to tell with girls, as girls are harder to diagnose with it than boys). He said he couldn't wait to meet Ellie as he had other children that attend their meetings with fascination about animal facts and that Ellie would fit in so well. I can't measure the relief of how I feel this week. It really does feel like a heavy burden has been lifted from my shoulders. I know thats so cliche, but its true. Ive never been so convinced of that weight being lifted until this week.

Just now, Im trying to come to terms with this new chapter because in one way I feel jubilant that this could be the greatest treasure we have ever uncovered about our girl but in other ways I feel so upset that I have had to take years of emotional injuries to try and get to the bottom of it. So my advice to you is if you are a friend of a mother with a child who has special needs, please understand the emotional journey she is travelling on and not judge or pity her. Instead you should just love her, support her and don't, for crying out loud, thinks she is nuts.

Phew - Im glad thats all out.

Please share with me if your child suffers with Autism or Aspergers. Im very keen to hear your stories xx


Gina said...

Hi Kirsty. My son has a semantic pragmatic language disorder. We were lucky in one respect as it was easily identified. He had the right "treatment". To cut a long story short, although he still has some "oddities" he is now 23 has just graduated from university with a masters and has a very wide circle of friends (relating to his peer group was one of his major problems) Hope this helps somehow. Don't stop fighting!!!

Sue said...

I want to wish Ellie and you all the best on your journey to find out if she has Aspergers or Autism. The main thing is you have each other. Don't ever let anyone tell you, you don't know your daughter. She is a part of you and you will always fight for what is best for her.

furrypig said...

I have 2 fantastic nephews one has Aspergers the other Autism. The one with As[ergers is at uni and although it has been hard for him in some ways he has done brilliantly and we are all so proud of him. As I was reading the beginning of your post I was thinking 'Autistic Spectrum' as a possibility but that is just from my linited experience and it is rarer in girls I believe. Good luck with your journey.

scrapraffe said...

In my 2nd year at university I lived with a guy with very very very bad aspergers syndrome.

Although he was very anxious and nervous around new people, quiet and a little bit awkward sometimes, he had lots and lots of friends who cared about him an AWFUL lot and was completly accepted amongst people at uni. He was also extremely sucessful at uni and has gone into a very impressive graduate job.

Aspergers and autism seem to be very well known now and the support he recieved from the nhs, the university and also local support groups was amazing. It's definitly definitly worth persuing, and if Ellie is diagnosed then I hope you will be as pleasantly surprised as I was as to how good the support is.


Sue said...

Certainly understand all you are going though ((((hugs))))xxx

Heather said...

Hi Kirsty! I had a rant on my blog a couple of days ago about my 7 yr old son who was sent home from school last week. I have decided to ask for an official diagnosis on his behavior even if it means going back to the same doctors & answering the same questions again & again.
I am so pleased for you & I hope that the light at the end of the tunnel is shining a bit brighter for you & your family!! XX

mustavcoffee said...

Hi Kirsty, just sending lots of good wishes to you all, on this journey to find out even more about your beautiful daughter. 14yrs is a very long time to be wondering, I hope your questions will be answered very soon,xxx

SDCrafts said...

I empathise completely but have no personal experience of Aspergers, only as a teacher and that's a different matter (to being a mother).

My empathy lies with you because it took 12 long years to get the official rubber-stamped neurologist's MS diagnosis. I was clinically diagnosed long before that but the scientific evidence was muddied by unclear test results...then we moved city...I had more tests...a result came along and there we are.

I always knew it was MS but the battle was far worse than the illness itself - knowledge is key.

I pray you get all the emotional, factual and supportive information there is from local Autistic and Aspergers group, Kirstie but feel you have already made a huge leap into TRUTH yourself...that will comfort you greatly. Hold on fast! And love that dear girl of yours even more than you ever thought you could.

Another thought - don't beat yourself up about food etc - just now you need to be kind to yourself - moderation in all things, including 'dieting'!

Anonymous said...

Hi Kirsty. I think I've mentioned before that my son has Aspergers. He was diagnosed at 15 - but we had to (literally) move 200 miles to get a diagnosis. He is finally learning how to cope with it after some great help from a wonderful specialist in Sheffield. I am also convinced my DH has it too but he refuses to accept it - and has managed this far anyway!! The only advise I can give you is what you are already doing for your gorgeous girl - to be there. Even when they do the weirdest things, or shout at you for no reason, or sit in their room for days on end, etc, etc; just be there with a hug and cuddle ready for "when they get back". Sending hugs to you all. Jude.xx

Jen said...

Just wanted to send you hugs because I know what a long journey it's been to get even this far. I've always wanted to meet Belle...! Take care x

Sue Ramsay said...

Have emailed you xxx

Joy said...

Being diagnosed is often hard but the truth will set us free! My son has celiac disease (age 17) and it took us 4 years to get it confirmed by a Dr. He is small and not growing properly due to lack of absorption and vitamins.
Good Luck with your daughter!

Debbi said...

Hi Kirsty,
I have followed your blog for quite some time and have felt such empathy for you. Although I haven't been through what you are going through specifically, I am the mother of five children (my youngest graduated from high school two weeks ago - yahoo) and you are sooooo right...a mother KNOWS! It's so, so, frustrating to have to fight for your child every step of the way knowing all the while that everyone is "tsk, tsking" behind your back. It is such a victory to have a name to the monster, if you will. I am sure that you have many battles ahead but it sounds like you are on the right track. My dad always said that doctors are all a bunch of "guessers" and you have to be your own advocate. He was so right. I know you are a strong person from reading your blog and now that you are armed with proper information you will be completely victorious! I just read a quote by Einstein this morning that may be appropriate, "Information is not knowledge. The only source of knowledge is experience." Sending all good thoughts your way...

Clarky J said...

Sending you huge hugs xx

hello gorgeous said...

hey sweetpea, SO glad you feel the weight being lifted, it's such a hard thing to bare, especially when you feel no-one is listening!

These are the first steps to going forward gorgeous so, if you can, box up those feelings of negativity and hurt that people have placed upon you, lock the box and place it somewhere far out of reach, then stride forward with such purposeful and giant will gain so much MORE love and contentment

Am always thinking of you... :o)


hello gorgeous xxx

Fiona said...

Be proud of yourself Kirsty and of your Ellie. Hope this discovery leads to an easier time for you all.

Sam said...

Hi Kirsty, although I can't say ' I know how you feel@, my heart goes out to you and Ellie (oh and Mark!) you know Ellie more than anyone else and really hope this is a positive way forward for you all. Don't give up (and don't stop the rants if they make you feel better!). love and hugs to you all. xx

Linda said...

My daughter has Asperger's, but I wouldn't say she "suffers" from it. She's a happy, sunny little girl and people always seem to like her. She has language therapy, as well as occupational therapy, and an educational aide in the classroom.
Good for you for advocating for your daughter! You know her best and she's lucky to have such a determined mother. The more information, the better. Just one more piece of the puzzle. Best of luck to you all.

Colette said...

I am so happy for you Kirsty, you are a fantastic Mum and I am sure that if Aspergers is diagnosed it will give you all a direction to go in so that Ellie can get the appropriate support she needs for her education etc. I don't know anything about Aspergers but having a child with Down's syndrome I know all about the trials of having a child with special needs. I suppose we were lucky in that we (I) knew straight away so didn't have to spend so many years as you and Mark have feeling helpless and frustrated. I hope now that this new chapter is a positive turning point for you all,

Colette x.

Jo said...

One of my good friends has a son with Aspergers, and he was diagnosed a few years ago now. He's doing really well now they know what was wrong.

Sending you all real big hugs my friend xxxxx

sarah said...

well done kirsty on perservering to do the best for your beautiful daughter - some people see things as 'labelling' of a child but for many it can be seen as a new chapter in a child's life where people can help a child with their diagnosis.
jodi picoult's latest book is called 'house rules' and is about a child with aspergers - although it is basically about a students murder and the wrong conviction of a student who has aspergers, as with all of jodi picoults books it is full of fact and information about the subject in question - in this one aspergers.

good luck with teh diagnosis process and hope you can finally answer some of your many questions
sarah x

Sharon Speakman said...

Hope you're feeling ok after everything. You're not crazy you're a wonderfully, caring mum! Never be ashamed of what you do for your Ellie, she's an amazing child who you love and adore and she's flourishing thanks to all those cuddles and loves! Sharon x x x

Liberty said...

hi kirsty i know what youre going through I have been having the same battle for the past 7 years. Luckily for me the NHS are being helpful, but I've been battling with self-doubt and perceptions of those who are not "in the know", and the overriding thing is that I'M HIS MUM AND I KNOW.. YOU KNOW???!! and mums do know best so keep at it. Liberty XX

Brook said...

My niece has autism and I have taught many students with developmental difference. I'm so glad that things are starting to click. It is not unheard of for these difference to be identified in the teens especially if the differences are mild. A support group will really help your family. :)

Kelly said...

Hi Kirsty -
My son was diagnosed with Aspergers when he was about 6 years old. He is now turning 14 in a week.
We have struggled at times through primary school - but high school seems to be a really good fit for him.
I hope you can finally get the answers you have been looking for.
Love Kelly xxx

thescrapbookhouse said...

Hi Kirsty,
I follow your blog from all the way over here in Australia. Ellie fascinates me, and your love for her is as large as the moon. I love that. I have 4 children, Joshua, 14 with 18q- syndrome (and classic austism) a girl, 13, and twin boys who are 11. My boys they think, are on the autistic spectrum with aspergers.
This is just "who they are". Quirky, different and most definately wonderful. They will grow up to be wonderful adults. Having an understanding of what it is you are facing is half the battle. Having a label makes it easier to understand, and gives you more answers, a direction to head in if you decide to. You do an incredible job with your baby girl and you always will. You are lucky to have each other.
Mwah! Tania

Marie said...

It's bonkers that even in this day and age with so much more awareness that it still can take an age to get an Autistic Spectrum diagnosis for a child. Bonkers!

All I see when I look at you Kirsty is a Mum who fights for all she's worth on behalf of her child. If only every person in the world blessed with children did the same thing. You deal with Belle in such a great way, nuturing the sparks you see in her to get the most out of the things she can do, whilst also being accepting of those things she can't do. I think she'll go out into the world a very balanced and happy girl. She's a credit to you and Mark and is one of the most adorable little ladies I've ever had the pleasure to meet.

As for not thinking you're nuts?? Nope, can't go along with that one I'm afraid. Definitley mad as a box of frogs ;)


mommy2alex said...

Oh goodness, it must be great to have some answers!
My son was finally diagnosed with autism when he was 5 after me driving myself nuts researching autism for two years and always being told "he's just a high spirited little boy". Well if so, then why do people in public give us "the look" when he shows signs of one of his quirks? Why is he SO different than his peers? He received services for speech delay since he turned 3 and since I was a teacher before I was a mommy, I knew what it was like to be in an IEP meeting and knew that parents had ALL the rights. I fight for him to have everything and it has paid off (once we finally found a pediatrician who upon meeting him rushed us to a center for autism spectrum disorder testing!) - so don't ever be afraid to ask for the moon for your sweet Belle! I could go on and on, but I won't! Please don't ever stop "talking" to your bloggers, there are many of us out here that can empathize and know the importance of getting it off your chest, even if it is through banging it out on your keyboard! I am excited for your family as you enter this new chapter of getting answers and help, it will be a wonderful ride!

DGgirl said...

Hi Kirsty

read this post with interest and would like to give you my thoughts but prefer to do it by email (nothing bad - just a private person).

Gill xxx

Anonymous said...

Kirsty, My niece Fiona has Aspergers which we had diagnosed when she was about 8 I think, she is 30 this year and we have gone through all kinds of different behaviour with her, from seperating all her foods on her dinner plate to making up stories so that she fit in at school - which only resulted in her being bullied. If you want give me a call babes and maybe i can get Fiona to have a chat with you she is very good at helping other people with the condition and has a web site that she writes on. Love Janet (Stoke)