I guess most people will be familiar with the term DABDA - The 5 stages of grief when someone close has passed on. I'm familiar with the name and also have myself experienced it when someone close to me is no longer to be. The strange thing is and i feel very uneasy about it, i seem to be experiencing some of the 'symptoms' where Taylor and his diagnosis are concerned. Of course it is a shock (even though suspected before hand) when any parent hears that there is anything wrong with their children whether it be an ASD or anything else. But i have never known the DABDA symptoms to be associated with anything like that. Shock & feeling like it's all your fault maybe but never that.Taylor was diagnosed with ASD 5 months ago (October 07) and as shocked as i was to hear it, it didn't really come as much of a surprise to me or any of us (husband, mum, dad etc) Like most people (who have a heart) when the shock had worn off, i cried (for weeks after if truth be known, on the quiet) but kept it together for the sake of the rest of the kids and family. As upset and emotional as i was i managed to be strong when we told the kids and tried to answer as many questions as possible, even researching some that we couldn't answer. I even managed to keep it together to a point when trying to explain to Dana (my 9yr old daughter) and watch her heart break and blame herself. She thought it was something she'd done to 'make' him that way and went to bed in floods of tears and cried herself to sleep. I felt so useless and there was nothing i could do to console her that night. I just can't understand why it has suddenly started now??? I never even would have associated it with anything else other than grief (death)
Up to date i can definitely say i have experienced at least 4 of the 5 'symptoms' of DABDA where Taylor's ASD diagnosis is concerned.
- Denial - I said right from the start that somewhere down the line they'll hopefully tell us they got it wrong and he is just a typical child with a few learning disabilities. I must have spent about 3 or 4 weeks after diagnosis telling myself (quietly) that yes he is different but NOT Autistic. He doesn't act anything like any Autistic person I've come across before (3 people up to present - different ages)
- Anger - Yes definitely anger and most probably still experiencing it to this day. I was and still am so angry at the fact he had this disability and nobody had picked up on it sooner. I know it isn't normally diagnosed until around the age of 3 or just before unless there is already an Autistic child to compare with, but we voiced our concerns about unusual behaviour (mostly obsessive behaviour) when he was 6 months old then 12 months old then 18 months old and was dismissed every time. I told my Health Visitor at 6 month old i thought he had OCD (obsessive compulsive disorder) and she basically laughed at me and said he was too young to obsess over anything and was probably just a fussy child.
- Depression - If you call crying at every little thing he does depression then yes definitely i have experienced this. For the first few days after diagnosis, i started watching him and everything he did. I used to sit and watch him lying on the floor on his own playing with his cars and other toys and tears would stream down my face. I guess it was a mixture of emotions, but the reality of him never leading a 'normal' life set in and for weeks after every time i saw him doing anything that was 'stereo-typically autistic' i would feel sad inside and where necessary go to the toilet to cry (out of sight) uncontrollably.
- Acceptance - I'd like to say i have 'accepted' the fact my little star is Autistic but i don't think i have completely come to terms with it. I have started accepting help from people i would normally tell to leave me alone and let me get on with it. I have started admitting when i feel like i can't cope and i have definitely started to open up a lot more to friends, family and professionals when i have concerns over how i feel and when i think something isn't working or might not be right for Taylor (which i would never normally do)
After months of meetings, research and experiences i know that he WILL lead a reasonably 'normal' life and do all the things that other children do (just in a slightly different way) I have seen him grow and develop (verbally and socially) over the past few months in a way i never thought he would when we first found out and he surprises me with things he does and says every day of the week. I am so proud of him and how he is coping with all the changes going on around him, i can't put it into words and i hope one day when he's older i will be able to tell him just how proud of him i am and he will understand me. Some things seem like a lifetime away at the moment, like his toilet training. Although we are making slow and steady progress it seems sometimes that we will never fully get there and that worries me sometimes. In terms of school and when he's older. I worry that he doesn't eat the right kind of foods although we are constantly reassured that what he eats is perfectly fine and he is putting on weight as to be expected rather than loosing it. I worry every second of the day that 1 single little thing may trigger a 'regression' and that thought terrifies me but i can't help but worry. I guess it's all part of being a mum. I also worry when i think of the future. He has over the past few days pinched Dana's little scooter and is learning to use it. Around the house is fine. Luckily we have a reasonably big house (not posh or fancy, but a bit on the big side) It has been 2 houses knocked into one to make a 4 bed roomed house (housing association) It has a garden of it's own that goes right around the house so it's all enclosed which is good as he has plenty of room to play. What worries me about the scooter obsession (newest obsession) is that once he learns to ride it properly he will most probably want to play out with it. I am fine with this (other than worrying about broken legs, arms, neck!! etc) I am terrified the older he gets the more he is going to see Dana 'out' with her Friends (out of the safety of the garden) and want to join her. We live at the very top of a very big hill so that thought is very frightening. I worry about Dana when she goes out on the scooter and her bike, but admitted not as much as i would if it was Taylor. I wish i could 'get over' this o
bsessive worrying about what might not happen!!
Anyway, on a brighter note HAPPY MOTHER'S DAY and i hope you have all had a really good day. I have. Dana has spent most of the day with her dad, but considering the current situation where that is concerned i am happy that she has been with him rather than me. Taylor has been really good for most of the day. I was left in bed this morning until 11am!! I got a card off Dana, Taylor & lads and a box of mint matchmakers (mm mm my favourite) When mum fetched Dana back she came with 2 more cards. 1 off Dana & Taylor and one that Taylor had done for me at Nursery. Dana routed in her book bag for school and gave me a card that she had made at school. I also got 2 new hair slides off Dana and a bottle of champagne off mum. Not my usual tipple but we drink it at Xmas and new year and it's really nice so I'm not complaining!! Not much happening this month, but we do have a meeting on the 7th to go and have a look around Woodnook School where Dana goes (mainstream) which is about a 2 minute walk from our house. A guy called Kevin will be there, he came to view the Stone Hey Autism Unit with us at Broadfield School a few weeks ago. He is part of the SENFLO team (special educational needs family liaison officer) you know i am so glad they have abbreviations for these different teams and professions!!! Anyway, he is really nice and I'm glad he's going to be there. I actually asked him if he'd come with us for a bit of moral support and he agreed straight away. There's just something about him that makes me less nervous around authority figures. It's probably because part of me is still expecting to be pushed into making a decision i don't want. He is there to support us and voice our opinions for us when needed and i like that. I will update later on in the week. Probably be Tuesday as Vicky (Speech Therapist) is coming to the house again to try and get Taylor to co-operate with his PECS again. GRRRR!!! xXx
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