Saturday, 28 January 2012

Aspergers... Here we go.

My gorgeous big girl Phoebe has always been a little, well, tricksy!

When she was born we had problems with breastfeeding and she screamed and screamed when presented with the breast. After just a few days of this we ended up moving to formula. It nearly destroyed me as breastfeeding seemed as natural as breathing to me and I couldn't do it. I didn't fathom that Phoebe didn't have the tone in her mouth to be able to do it effectively. Then she was on formula and it became evident she suffered from reflux, badly. When a 3 week old can get her toes wet with sick whilst lying on her back it is fairly obvious there is a problem. The GP's wouldn't help though as she was gaining weight. Then there was this weird rash on her cheeks... my research suggested it might be cows milk intolerance but again no one listened. Then one morning I was changing Phoebe and felt a lump on her back... we were at the walk in centre within minutes and seen quickly. They prescribed antibiotics as they thought it was an infected sting. The first set did nothing, she was allergic to the second set and I refused a third and insisted on a paediatricians appointment for her. Thanks to the choose and book system I was able to  book an appt for shortly after a feed and, as I hoped, she barfed beautifully for the paediatrician who diagnosed reflux on the spot. The lump turned out to be a cavernous haemangioma and totally benign (it has now all but disappeared!). Thankfully the reflux and the rash calmed down once she hit 6 months and we started weaning.

We had a nice normal 6 months then, Phoebe was a late mover (no rolling, no crawling until 10 months etc) but nothing out of the ordinary and she was all caught up by the time she was 12 months old. We were so proud of our little toddler that at first it didn't register that she didn't babble at all. She made noises yes, shrieks etc but no Dada or Mamas. She said her first word "shoes" but then forgot and didn't say anything for a long time. When we got to 2 I was concerned but was assured she was "normal" by the HV and it was only just before she went to preschool (a few months before her 3rd birthday) that she was referred to the speech therapy for lack or talking. At that point she had maybe 8 - 10 words. Once she was at preschool she picked up language fairly quickly from the other children around her. It was wonderful to communicate with her without the aide of signs. I remember being nearly in tears at my sister's wedding when the staff thought she was deaf because she signed what she wanted rather than said it. Once speech started coming properly though it came thick and fast and again she caught up so I didn't think too much more about it except for a few pronunciation problems.

Phoebe loved preschool and LOVED her teacher Becky. But she never came home talking about who she played with or who her best friend was. It turned out she mostly played with the boys which was fine and she was happy so again I didn't think anything more of it other than it was a bit sad that she didn't seem to be making friends. She was doing well in everything else and coming out with some corking phrases. I took her on playdates with Mummy friends and I was told that their children always remembered the girls and asked to see them again, I returned the compliments but Phoebe never ever mentioned anyone she had met or asked to see them again. The one exception was Rowan and Lexi but I think that is mostly because she had seen them so often and loved their house almost as a second home! Throughout this period she would watch programmes to the point of obsession, her first one was Brum. She absolutely ADORED that little yellow car and her constant refrain was "More Bum?!". Others included Come Outside, Cars and Horses.

When Phoebe graduated out of Preschool and into Primary I sensed there would be problems as the school was moving at half term. I already knew then that Phoebe did not do change, it upset her and her behaviour deteriorated rapidly if she wasn't prepared properly. I was assured that it would be ok but it wasn't. As soon as the school moved to the new location she started getting warnings and time outs like nobodies business. Teachers were confused and it took about 2 weeks to sort this out. Then they changed the discipline system and we were back to warnings and time outs through the nose! This had thankfully settled by Christmas. Over the break we kept seeing Phoebe watching TV and her eye falling in. We also noticed she had no patience for reading or any other close up work. So we took her to the optician where it turned out that she was hideously long sighted (+6.5 & +7). The difference in her as soon as she wore glasses was amazing.

From the age of 20 months Phoebe got her sister Clara. We always joked "There is something about Clara" as she was just so much more personable than Phoebe was. She smiled easily, she talked early (oh boy did she talk...) and she would come home from Preschool with tales of who she played with and who was her best friend etc. It started occurring to us that actually there wasn't something about Clara, more that there was something about Phoebe. She just wasn't like other little girls her age who were already having the girly dramas of friendships. I bought this up with her reception teacher who assured me she was ok and it was probably because she was so intelligent. I buttoned my lip for a while and watched her. I raised it again with her Yr 1 teacher who said no she didn't have specific friends and flitted between groups of children and really enjoyed doing her work often begging for more!

All the while Paul and I kept talking to each other with our worries about how Phoebe just wasn't like any other 6 yr olds we knew (and there are a fair few!). The thought of going to the docs got more and more necessary. She is obsessed with Harry Potter, doesn't really like making eye contact and most importantly shows no desire to play with other girls her age. She still had made no friends except those that I have cultivated for her. At friend's parties she could usually be found with an iphone sitting quietly in the corner perfectly happy. At her own party she was happiest watching Harry Potter in the living room whilst wearing eardefenders and ignoring her party guests who were all running around screeching as little girls are want to do. We started to suspect that maybe she had Aspergers Syndrome and started to research it. I had watched a program ages ago about Aspie children and, knowing my friend's little boy Lexi who has Autism, I knew it a, manifested differently in girls and b, that Phoebe wasn't autistic in the traditional sense. After discussing things with Paul we both agreed it was sounding more and more likely that this was the "something".

The crunch point came last week. Our lovely rabbit Turvey died suddenly and I found him dead in his hutch. I bought the body in and told the girls the bad news. Clara took it as you would expect with tears and demands of "WHY?!" but Phoebe was very calm and detached, she stroked his body and then asked to look in his eyes to make sure he was really gone. She was able to tell me that her heart turned over and broke a little but she seemed unable to connect this to an actual emotion. I made the call and booked an appt to see her GP. That night Paul and I wrote a list of her "quirks" and we made it to 2 sides of A4 paper with them. I took them with me to the appt and went through them with the GP who agreed it sounded very likely and that she would refer her to CAMHS.

So this is where we are today. Waiting to find out if CAMHS will accept the referral for diagnosis. We have been clear that this does not change her at all. She is still our funny, happy Phoebe who we love all the more for all her quirks! She is so bright and intelligent and usually an utter joy to be around. I love how she speaks in grown up sentences that just don't seem right when they come from a 6 yr old, it makes people stop and laugh. She is the top reader in her class and top in almost all of the subjects they do! She loves to do homework and read books. She loves listening to Harry Potter audio books and playing with her HP lego. There isn't one teacher who knows Phoebe in a negative light at school, I have been sought out to be told how fabulous she is in the past! Her Preschool keyworker is still one of her biggest fans! We have a few problems with her over reactions to silly things but if dealt with calmly they don't last long and thanks to careful managing we don't see many of them.

You may wonder why if we don't have any problems now are we seeking the diagnosis. Well cast your mind back to your own puberty. Remember how hard it was and how confused you were? Imagine that but with a "something" about you that sets you apart a little bit. Harder right? We want Phoebe to understand who she is as she grows up and we think that identifying this part of it will help her do that and enable us to help her manage it in a way that opens more doors for her. It is not a label as such, more an tool we can use as and when we need it.

So this is the start of our journey into a hopeful diagnosis. The first steps on what is hopefully a relatively straight forward path!


Debs said...

Phoebe seems like a wonderful little girl and you should be very proud!

Muddling Along said...

Well done you - it is often hardest to listen to that nagging little voice that says that something isn't quite right and to do something about it. I know because we've been there, done that and then eventually got the diagnosis we needed

Hang on in there and keep fighting for your lovely, quirky little girl