OK. Where to start? I guess at the beginning is good.
Josh was born in June 1998, it was a pretty normal, straight forward birth with no complications and I was allowed to take Joshua home from the hospital later that same day. I always think myself lucky in that although Josh was my first child I had worked with young children since leaving school and was an NNEB qualified Nursery Nurse. I'd worked in Nurseries and as a sole charge nanny for a family with two daughters aged 18 months and 4 months so I knew what children should be doing at certain ages and stages of development first hand. The thing I didn't know a lot about then was autism.
When Josh was a baby I knew I should be able to distinguish his cries, with the 4 month old I had nannied for I knew exactly which cry was a tired cry, which was hungry, which was give me some attention etc. With Josh all his cries sounded the same to me, I couldn't tell any difference. I thought maybe a was a bad mum, that maybe I should have stuck to looking after other peoples children. Why could I tell the difference between a looked after child's cries but not have a clue about my own? That was Josh's first struggle with communication but it didn't stop there.
Doing the weekly food shop with Josh was always an experience. He would cry from the moment we walked in through the doors of the supermarket to the moment we walked out again. I know now that the poor child must have been having a sensory overload between the lights, the noise, the hordes of people, the shelves slacked high with various different coloured products not to mention the smells and changes in temperature. It's no wonder he screamed, but we hadn't a clue back then and we'd just joke to the checkout lady on the way out that he was just a typical male - hated shopping!
Josh was very late in talking and when he did start he might say a word one day several times but then as quickly as he'd said it it was gone. I thought maybe I'd imagined it and that he hadn't really said that word at all, it just sounded like that's what he'd said but it was just that the words didn't have any meaning to him. My dad was once listening to Josh "talk" and he said "It's like he's got the tune but doesn't know the words." and that's exactly what it was like. Josh had the rhythms and intonation of speech but totally lacked the words to go with it.
When Josh did eventually start speaking meaningfully I honestly thought his first word would be "Cat" I'd have even have put money on it. We had a fluffy cat called fluff cat (of course!) and also two other cats that lived two doors down that came to visit on a daily basis so the house always had at least one cat in it if not two or usually the three. So you would naturally expect being around cats so much that Josh's first word would be Cat or something along those lines. No. Joshua's first word was "there-you-go" said as all one word. Why "there-you-go"? I hear you ask. Well that's what I would say to him when I gave him his cup of juice or a snack. I think Josh liked the rhythm of it, the way it sounded, I don't think he associated it much with what I was giving him at the time.
Shortly after that Josh taught himself to read but I think I'll save that chapter for tomorrow! :-)
7 comments:
Great post Fiona! You are an amazing writer! I think any mom of a special needs child is just a HERO! I seriously mean that. All moms are pretty amazing, but when you deal day in and day out with challenges too numerous to mention, you, my friend, are a hero!
I can definitely relate to this. I couldn't tell the difference between Ashleigh's cries either. It's really strange when you're used to children and have had no difficulty understanding them and then find that you're at a complete loss to know what your own child is trying to tell you. I knew that he'd scream whenever we went out of the house, but not why. My mum would shrug her shoulders and say it was justice as I'd been the same and that's when it dawned on me that it was sensory overload because I struggle with it too. Solution was to put him in a cozy pushchair sleeping bag with the hood up and ear muffs. Shopping was so much simpler afterwards even if we did get some strange looks, especially in summer. Josh's first words made me smile too, so much sounds familar.
First of all ...."jason" you need find someone else to pester!!
great Post Fe Fe....working in nursery setting also...opens your eyes, We have 2 children at work who we think are autistic...and at each end of the spectrum!...It is so true what you say about the crying, one child has the same cry for everything, like a high pitch screaming sort of cry and it is the same what ever his need! His parents think he is very clever because he instantly can repeat every word you say perfectly! but then will repeat and repeat the word or sentence until you say something else! and if he is upset he will repeat for longer.
When the children become rowdy he starts to cry "the cry" it is heart rendering. I take out of the room to a quiet area and this.
helps.
It is heart rendering also because the parents are not at the moment taking on our imput. (we are very careful as to what we say...but still keep them informed in a considerate manner)
We are now building up a picture of the child that can help the child and family.
... if parents could read such posts and blogs perhaps this will help them not to be scared of the "label," as for many without proper infomation still sterotype and veiw it as a "label".
Say hi to Josh for me .... not seen him in age!!!x.x.x.x.x.x.
Oh Fe-Fe.....My heart goes out to you and Josh. I hung on to every word you wrote and my eyes were just misting up. Josh is special in every way Fe-Fe. I love him already and I can't wait to read tomorrows post.
hugs
malieta:)
All my children spent their first days of life in the NICU. One child lived a short but wonderful life and my other two are growing more and more each day. One is a young adult in college and the other a 19 month old toddler. I understand special needs and I am thankful to be their mommy. I do admire you also. Thank you so much for making me more aware of autism. God bless you and your family.
Sincerely,
Nancy Grant
Wow Fiona!!! What a beauifully written post.....honestly, I hope you keep a journal as it would make such a special story!! What a true hero you are.....I pray that you, and others, will inspire the awareness that will lead to more early diagnoses and research!!
I was amazed how similar my 3 month old baby pic was to that of Josh's. You can see it here: http://www.donnawilliams.net/photos1.0.html
on reflection I think it shows things like Face Blindness, Social Emotional Agnosia, meaning deafness, context blindness and Exposure Anxiety, although I was assessed at age 2 as psychotic and diagnosed in the 90s as autistic.
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