See, I don’t know how to write about this, because at this stage, we still know very little. Not much at all in fact.
We do know that Amy speaks and understands well above her age level. We know that. We know she is intelligent and highly vocal. We know she has amazing problem solving skills, as exhibited by her constant escaping from the house. I must be the rare person who constantly loses their child, even when things are apparently secure.
We know her strong points.
However.
She is missing some things too.
Like narrative skills.
She can’t extend her play – which is why she pays attention to an activity for approximately 30 seconds before losing it. Before she wanders off, does something else, walks away in the middle of a conversation. She doesn’t extend her thinking past the now, past the ‘I’ve done this thing, now I don’t think about it again, ever’. She paints a painting for the sake of painting on paper, not to draw a picture, or tell a story, or show me something. She paints because she likes putting the brush to paper and that’s it.
Not knowing how to extend her play and missing her narrative skills, Amy doesn’t understand how other children interact at all. She plays next to children, like a toddler, rather than with children, which is what you’d expect from an almost 4 year old.
She doesn’t like reading, because missing narrative skills, she doesn’t understand the story. For her, it appears that while she remembers the page before (she has an amazing memory), she doesn’t connect it to the page we’re reading now and she doesn’t anticipate the next page, nor how the story will end. It’s all in the now for her, another toddler like behaviour. It why she’s only been allowing me to read her stories for the last few months – not because she wants a story, but because she doesn’t want to miss out on the snuggle and hearing me talk.
This is why sticker charts didn’t work. She had no idea why I was giving or withholding stickers, not having narrative skills, she missed the link between action and consequence. Do something good, get a sticker! She didn’t understand why she had to behave to get the sticker, she just wanted the sticker.
It’s also why disciplining Amy is like beating your head against a brick wall. She doesn’t get the action = consequence thing. Not properly.
Amy also appears to have some sensory problems, mostly with her vision and hearing. She is incredibly distracted by things and doesn’t seem to be able to switch her brain off to ‘background noise’ vision. It’s why she has to examine everything inside a building, why she has to open doors, look inside, pull things apart etc, because she needs to be able to examine everything closely before she can listen or pay attention.
It why she bolts in the supermarket and melts down often.
She also has trouble listening when there is background noise, like the radio playing. She can’t tune things out.
Of course, it’s all early days yet and none of these things are set in stone. But this appears to be why Amy has so many issues listening and behaving. It seems that we’ve been expecting way too much of her, because her language and comprehension are so developed.
We’re doing more work and more studies into Amy’s behaviour with IE and the women down there are absolutely lovely. Hopefully once we’ve pinned down exactly what is happening, I will have more ideas on how to deal with it.
For now, I’ve been asked to put all the children’s books away, bar one and read that one book every day. A lot of the toys have been put away too, so that Amy can concentrate on one activity at a time, rather than being overwhelmed by everything.
School is going to be interesting, that’s for sure.
And for something amusing, you should have heard me trying to explain to Amy what manners were. She asked for something, without saying please and I said ‘Where are your manners!’ I explained that manners were please and thank you and polite talking, but she still seemed to think I had something called Manners hidden somewhere and that we ought to go and find it.
Sigh.
I can’t help but feel that this is just the tip of the iceberg.
{ 31 comments }
(((hugs))) You’ll get there and once you’re able to give Amy the keys, she’ll be far out-stripping her peers
laugh and never lose your sense of humor.
From someone who has been there, and is still there to quite an extent… you have to retain your sense of humor.
Squealer is 11. We’re slowly starting to enjoy her more and stressing less. It’s been interesting!! She wasn’t an escape artist, thank god, but she withdrew so completely no one could reach her. So she did I suppose escape, just not physically.
She’s doing well at school this year, mostly due to an excellent teacher and intervention by the psych department – who interceded at her new school on our behalf and have made this the best year she has ever had, school wise.
But she still doesn’t see consequences coming, and that terrifies me.
Love her more, and laugh!
Amy sounds very bright.
I feel your frustration. My 4yo is quite advanced verbally, grasps concepts well, good with numbers. But I feel we expect more from him..probably because of these sorts of abilities.
Many times, he still does not focus on activities for very long…we still have tantrums and it’s only recently he’s stopped running off at the supermarket.
I’m slowly learning to stop expecting more maturity from him and give it time.
I think they all have their strengths and areas of weakness. Hang in there!
Alison
Hugs.
Oh hon. Whatever the outcome is, Amy’s gonna be okay. Because she’s got you.xxx
Its hard being stuck in the bit of limbo isn’t it? Knowing what’s up but not sure what to put into practice to help her. I’m glad the EI people are helping. It’ll make a huge difference to you all! *hugs* xx
She’s a truly blessed girl to have the parents she does! You’re so aware and ready to find the solution. Too many folks get along fine with their heads in the sand, where the kids progress in a limited way based on the traditional expectations.
She’s beautiful and perfect, even if she’s progressing differently.
Sounds like you’re in a great program there. Take care.
So glad you have had this evaluation done. Now you can finally start to make life ”work” for Amy. It will also eventually make your life easier too. No doubt it will be hard work but by small steps, sometimes sideways, occasionally backwards but overall forwards, you will get there in the end
She sounds like I did when I was young. I tended to be different to many children too. I often walk away from conversations at the best of times and never liked reading myself. My memory was good (when I used it!
). I can recall one trait I had – asking people’s birthdays in the supermarket in my local town and then remembering and recognising them and announcing to them that I remembered their birthday. Clever, I will admit, but odd too.
She and I might have something in common. Hopefully her issues (and yours) can be sorted out.
Hopefully you will have some answers soon! Remember that diagnoses can sometimes change as your child ages. Emperor was plain ADHD until I felt like going back for another eval years later. Now he magically is autistic too.
Um… he always was. Now they just popped a name onto it. Hope that makes sense.
Amy will always be Amy. The diagnoses you get (note plural noun; doctors can’t stop at one lol) will just be keys you use to understanding Amy and getting her the help she needs.
It sounds like you’re doing everything right. It sounds like you’ve got some good people helping. Just take it one day at a time, one or two goals at a time and I’ll bet she’ll come along in leaps and bounds. I’ll bet you’ll find that the explicit teaching of those few things will feed into other things and she’ll really take off. Hugs.
Amy is so incredibly lucky to have you. Having parents who are educated and understanding and willing to seek answers will make all the difference in the world. Really, so lucky. xoxo
My husband has Aspergers and I know that he definitely had some of these issues as a child (i’m not saying amy has aspergers, just that my husbands mother would have a lot of sympathy for you, he was quite the escape artist. babysitters would have to tie him to a chair.) I didn’t know Taylor as a child, so I’m not sure all the things that went on with him. But I know this. You and Amy will be OK, you are catching this very early. And are already getting some advice to help with some problems. My husband didn’t and he was nearly 12 before he could read. So I guess in a very roundabout way, I am saying, that you are doing exactly the right thing.
This is all very good news. Feel free to ban me for saying that. But it is good news. People are listening to you. They’re going to try to help you cope. Amy is going to have help. She’s not going to be labeled dumb or obstinate or useless. She’s going to get some labels but labels that will give her access to services rather than labels which allow people to feel superior to her. I know a lot of parents raising children with sensory difficulties (off the internet mostly). I feel like I know too many. But when I look their kids and the ways they are learning to cope with the world, a bit of me gets really sad for all those kids I grew up with who weren’t offered help. Sensory issues are really hard. I get overwhelmed by the lights, by the sounds, by the constant new information I’m bludgeoned with every day. It must be awful to have to cope with that with sensory problems. I’ll keep you all in my thoughts. I am so glad you’re being supported.
It must be so overwhelming to try and deal with an issue like this with your child. I am sorry you are going through this, and so happy to hear that you have a good team working with you. I’ve had a couple of kiddos here at school with sensory processing issues, and we have accommodated for them well. Sounds like Amy’s got some wonderful strengths to build on too!
My son could not sit still ever to listen to a story. Now aged nearly 18 he must be the only male of his age with blank walls. He has never understood why people put stuff on walls. Idioms were a no no – pie in the sky, was I mad, he would search & search for that pie and it never was in that sky. He has only just got round to socialising preferring his own company and thats fine because he is doing fine now on that front. We only waited about 14 years for this! We would invite other children round to play and things would go a bit wrong if you get my drift.
I agree on the sensory overload – too many toys in a room is confusing. Eventually when I stopped worrying that he was going to be scarred for life because of the lack of story reading we worked out he loved to listen to story tapes especially the same one over and over again. As he got older thank god for harry potter! He has a type of dyspraxia that affects his fine motor skills (we thought he was dyslexic until we paid a lot of money for a decent assessment). It turned out his brain couldn’t get the message to his fingers to write etc. he can read fine though now but concentrating on the information within the content is still a struggle. Unless its something to do with a current interest like planning in detail his gap year with military precision.
Amy is so young, its hard not to compare with other kids and societies expectations but she sounds bright, lively and thoroughly adorable if a little exasperating. Changing perseptive and applauding the wonderful in her may help on the frustration front. My son wouldn’t have got the manners thing at that age either, sometimes we assume don’t we as adults that kid’s get ‘our’ language.
This world these days is full of a lot of noise we don’t realise. When I was a child there was only three channels on the tv – an hour if we were lucky of sort of children’s programme’s and I think there was a lot more silence and a lot less expectations. Books weren’t even so sensorly overloaded – no connections to tv programmes not even touchy feely or particularly childhood friendly. not saying it was better but we knew where we were with a Ladybird Janet & John book!
Amy is so young yet, I hope she isn’t labelled as having sensory processing issues before she starts school, I hate labels since I worked in school’s really. Children develop at different paces and what is one’s strength is anothers weakness. Whilst I agree its important that Amy is supported to achieve her best potential I can’t bear the thought that that which is unique about her could be channeled into conforming to be too much like everyone else.
Positive affiirmation used to work with son with similar stuff going on as Amy and the repetition of wow well done etc. and trying to ignore the minor irritating stuff worked better than losing my rag in the end. My daughter who is 20 had a major loss of manners last night and we had to go back to basics on the manners front!! lol
Still having a thingy about words like issues… sorry I just can’t help it. Now me I am old enough at 46 to have issues but 4 sorry Veronica far too young an age for me. I prefer words like individuality & sparkling personality. Otherwise before you know it there will be whole phrases like .. challenging behaviour and all that.
In the supermarket I would spend a lot of time getting son to go get 4 potatoes, 6 bananna’s, see if he could find the cheese that Grandad liked bla bla, with massive praise. I’d also play dumb and pretend I couldn’t find stuff that was right in front of my nose to see the satisfaction on his face when he would annouce – Mum, the teabags are there can’t you see them. I know I know – grandmother & eggs but I would rather devise any sort of game to avoid supermarket embarrassment!
We now know also that he was having numerous petit mals so that accounted for his lack of concentration sometimes, but hindsight is a great thing.
If it helps my daughter’s art teacher said the year before last that they had to create a large ‘area’ at the back of the art room for my daughter to do her ‘random’ creations due to complaints from other pupil’s about being splatted with paint and that often they would need a mop and bucket to clear up afterwards and when asked what she had actually painted she would gasp in astonishment that no one could see what she could see! She was 18.
It will all turn out OK in the end.
Achelois has more experience that I will possibly ever have, but I’ve had both an asperger’s and a severely autistic child in my life. No fear, lack of ability to comprehend discipline, lack of attention comes to mind. Now the asperger’s child was some years ago and no longer in my circle, but he was such a frustrating handful. Obviously intelligent, but completely unresponsive to consequence: “Tidy your room and make your bed or we cannot go out to the zoo.” I’d find him with on shoe on sitting in the middle of the floor distracted by some other task and a partially made bed less than minutes later.
My nephew who I’ve had a fair amount of time with during his family visit (they go back home overseas tomorrow) is on the more severe end of the spectrum with autism. He hears, sees and retains an amazing volume of information. He plays the guitar amazingly well. But he lives in NOW.
As far as hearing goes, some years ago I had mine tested because several people commented that I seemed to have an impairment. Testing by an audiologist found at the time that I had normal or above normal hearing at all frequencies. The result, she said, was that sometimes people with more acute hearing fail to decipher the detail when there’s lots of noises at once. And that’s me to a tee. I hear the noise but fail to decipher the content. She said it can be a concentration thing for some people, but that’s not always the case and in mine, I don’t think that’s explains things. I see the lips move and hear the murmur, but all I get is a cacophony of noise. It seems that it’s not such an uncommon problem if you ask around.
If there’s anything all the posts here should show you, it’s that life for children with any range of inborn challenges can be happy and fulfilling, for both parent and child. Let me tell you, when the autistic child accosts you with an eskimo kiss out the blue and you know that you’ve made it through the emotional wall, it’s worth the austere exterior he puts on the other 95% of the time!
Hi V, being remarkably concise for a change, I just have to say hope all is well and I will stay tuned. xo
I have the same trouble with listening against background noise. If there’s a radio on, then one ear is there. If a favourite song is on, both ears are there. This happens often enough when the conversation I’m being required to listen to is boring me.
(I also have some hearing loss, so background noise is already an issue.)
Can you try maybe saying to Amy, “you need to say please before I give this to you”, then after you give, remind her to say thank you, instead of asking where her manners are.
I agree with the others that once Amy “gets” the connection between action and consequence, things will be better, she’s smart so hopefully that shouldn’t take too long. It will just be very intensive, getting her to pay attention long enough for things to start sinking in.
I’m not sure what else to say, except I’m glad you’re getting help with this, and like a lot of things, the earlier the better.
Hey Vonnie I made something for you….
8============================D ‘ooow’
8======================D
8============================D ‘oooow phhhhh’
8======================D
8============================D ‘oooooah!’
‘ahhh, loovely! <3'
8=========D
'ahhh'
Heheheheheheheh!
YOU ARE SICK, WAYNE!
So basically Wayne (not very german by the way), your saying that you are indeed a dick!. Lets all clap for the dick Wayne- lots of clap for the Wayne I mean dick.
Hugs hon. I know that it must be very worrying and frustrating right now, but Early Intervention can make a world of difference, just close your eyes and try to imagine the world as Amy might see it…..I bet there’s a lot of magic and beauty there too.
I didn’t read all the comments, so this may have already been said. On the other hand, I may be a million miles off. But it sounds like a sensory issue. I spent a lot of time lately talking to my sister in law about kids with sensory issues and all the amazing things “out there” designed to help. If you want an absolutely brilliant and compassionate resource, I could put you in touch with her. Let me know.
Hugs, meanwhile.
Hi, don’t know if you’ve read many of my posts but we’ve just got a diagnosis for J, he has Aspergers. We had a feeling it was something like that because like you some things just didn’t seem right in one way or another. We have our 1st meeting (EI) this week, I’m hoping we’re going to start getting some help and support for us and for him now. It’s been a long time coming, back in the UK our “specialist” told us there was nothing wrong with J and we were only worried about his behaviour because I was depressed….. oh yeah and because it was Christmas, not quite sure how she figured that his quirks for the last couple of years were down to christmas!! Anyway, now we have a diagnosis I’ve had alot of mixed feelings, like I said I knew it was coming but it’s still alot to take in. The more I read about it, the more amazed I am by him, it’s hard work at times especially with the sensory overload stuff but now we’re getting some help I feel like a weight has been lifted off my shoulders and I can see that things are going to get better. what I guess I’m trying to say is, I’m kind of going through the same thing, although because we have a diagnosis we’re abit further along the journey and it’s been so worrying, frustrating, stressful and all the other feelings but it will get better, I still feel all those feelings but somehow it’s just abit better now. I’m sure since you have people listening to you and supporting you (EI) things will get better….. and think of all the “super powers” she has, that’s how we’re thinking of J’s sensory issues. Hope everything works out ok ((hugs))
EI can be such a wonderful thing. The ideas, resources, support provided can help lift the weight from shoulders.
It can be hard going, and confronting, but for what it’s worth, I think knowing is better than not knowing. If there is to be some sort of diagnosis, I think the earlier it is made the better. Then instead of being labelled at school as a difficult child, teaching and support staff have something tangible and that means Amy would have the support she needs to learn and achieve, as would her teachers, as would you as her family.
Thinking of you all.
I read this to my husband who has sensory integration/overwhelm issues and he could relate to a lot of it from Amy’s perspective. I could relate a bit from yours.
Bill’s an Aspie with fibro in case that’s relevant. .
One thing I’ve noticed is that when he’s in more pain than usual then he gets even more easily overwhelmed by external stimuli. It took a long time for him to learn to identify pain as one of the offending stimuli when he was overwhelmed even when prompted to check.
Best wishes to you and your family.
I hope EI can help you find the answers you need.
Hugs! While I have NO Personal Clue as to what it must be like. I do have a great deal of empathy for you and your family and Amy. Hugs! I hope you find the answers and ways to help Amy be the best she can be soon! So you can all thrive!
Hugs,
Tonja
Comments on this entry are closed.
{ 2 trackbacks }