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  1. #81
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    Hi All

    Im Mel, mum of 3. Zakaree is nearly 5 and is my ASD angel. I also have Saxon who is 3 and Ava who is 17 months.

    Zak was diagnosed at 2.5 years. It took a long time for any professionals to take my concerns seriously. Zak lost all the language he had at about 18 months of age.

    At the end of last year Zak had a developmental test done to see where he was at before starting Kinder. The lady that did this test was not the one that diagnosed him and after spending very little time with Zak she decided she wasnt entirely sure that he was autistic. So now we have 2 go back down the long road of specialists, tests ect. However they want me to wait until i have used all of my FACHSIA funding.

    So at the moment we are just cruising along not really knowing what 2 expect.

    It took my husband and i awhile 2 get our heads around the autism diagnosis but after alot of help and research we have come to terms with it all and now we are back to square 1. Not to worry tho because no matter what label they put on him in the end his still going to be the same gorgeous Zak.

    Im looking forward 2 chatting 2 u all.

    Have read some of your intros and i must say u are all very strong women.

  2. #82
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    Hi ladies

    My DS was born in Feb of this year (now 6 1/2 mths). He was diagnosed at about 6 days with Rubenstein Taybi syndrome. It is a rare gene disorder associated with the 16th chromosome, and W was diagnosed from his characteristic appearance, broad thumbs and toes, and undescended testes.

    Individuals with RTS often have issues with sight, hearing, internal organ dysfunction, many are non verbal, have poor muscle tone, feeding issues, are small for age, have development delays and varying degrees of learning difficulties.

    Apart from some kidney issues (he only has one and there was a blockage requiring surgery at 14 days) some initial breathing and an angulated thumb, my little trooper has done awesomely well, on solely breast feeds from 3 weeks of age, growing well, but we are starting to see the differences with other babies of the same age, mostly his size (he is a little bubby still) and i think soon with development. We are so so proud of everything he does but it's about now I would like to talk to parents of SN children as I am feeling ready to recluse ourselves but don't want to - if that makes sense?

    My little man is a constant delight and I love him to pieces! But sometimes there is fear of the future and what it may bring and I hate that it is there.

    You mums (and dads) in here sound amazing and I can't wait to join in with your chats. I might be a bit behind on some of the terminology but look forward to learning.

  3. #83
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    Hey guys! So this is still a little hard for me to write as i am sure some of you would know, its a different thing dealing with it everyday, then actually writing it. I will probably tell you a simple version of what has gone on and write it somewhere else in more detail, because it is a really confronting but such a great story, and not many people are aware of the condition, and if you would like the name of the condition i can tell you. But mainly here i will tell you a little bit of what my little girl has been through, you should keep in mind she has an older brother and i think i might have to get him checked out but that's another story and sorry for my rambles. So anyway i noticed my little girl at around 6months that she was not 'normal', long story short, she was having seizures, not keeping food down etc, finally got her medicated. She was still having seizures, all her development had stopped and her emotions were gone. Kept trying her with different meds, she still continued to have seizures but they become less and she started rolling and crying and laughing which was such a good sign for us. We have regular hospital trips, doctors appointments etc. We have currently just undergone a major surgery to remove her seizures to try and help her develop, and although it has been good so far, but she is still so developmentally behind, doesn't speak words cant sit her self up although she can hold her self up(sometimes), she can't crawl or walk, we do no know what her future holds. She is really a great little girl and their may be other complications with her condition but i just take a day at a time and i try and hold on to the good things, I look forward to getting to know you all=)

  4. #84
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    she hasn't got GLUT1 DS does she?

  5. #85
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    Hi Everyone,
    After reading all your intros I feel so pathetic writing about my son. He has ADHD and some sensory issues. He is almost 4 and it has been a fairly challenging experience due to his impulsivity and I guess fairly isolating as it's hard to take him anywhere.
    I live in the Illawarra and would like to start a Playgroup to meet other mums with SN's kids. I'm new to all this posting so sometimes don't get all the abbreviations! I'm a social worker as well and if any of you would like me to help you in whatever way I can ( resources, carer stuff ) I'm happy to try & help. Look forward to chatting to you all. Louisa

  6. #86
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    boysrgr8 is offline living with a constant look of OMG!
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    Hi Louisa, everyone walks their own journey and yours is very valid. Hope to see you around.

  7. #87
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    Default hi all

    hi all, im pretty sure i was in here at the beginning of the year, but i havent found anyone that looks familiar!! anyway, i have a little boy, Jethro, was diagnosed with CP in april, going really well, waiting on funding for a trampoline for him and waiting to hear from the childrens hospital in sydney, so we can get an AFO, would love to chat and catch up with everyone, as it has been a long time since i have been on here, im also on MSN, facebook and skpe, and email of course, take care all hope to chat to you all soon
    Jess

  8. #88
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    Hi All,
    Compared to some my little man's needs seem quite mild, and after reading all your stories think each and everyone of you is doing a fantastic job.

    My little man will be 7 next week and for the past 2 years have been trying to get some éxplination' and understanding for a few of his issues.
    This year we have finally had some break throughs,we have been given some answers which has allowed us to understand and help him.
    He was diagnosed with borderline IQ academicaly but high IQ mechanically (if that makes sense) high anxiety, delayed verbal communication and can be quite hyper.
    Thankfully the teacher he has had this year has been fantastic with him and worked wonders in some areas of his reading, at the begining of the year he could only read and write his name, now he is able to read, write and spell roughly 10 different words including his sisters name which he is so proud of.
    Having the high anxiety and borderline IQ means days where I am a bully and he hates me. I have gotten used to this as I understand that that is all he is able to communicate at that point in time and usually 5 seconds after saying it he is curled up next to me for a cuddle.
    Any change can be too much for him, this generally leads to pooed nickers, or temper tantrums. We have learnt by following his lead, if he needs to dig in the dirt he digs and can be there for hours, if he needs to build he can play with lego for hours on end both give him the opportunity to create his own santuary where everyone understands him.
    At first I blamed myself as it wasnt till his father left that I had the strength to chase the answers to the questions I had had since his was tiny, and to me Lachlan was and always will be Lachlan no matter what.

  9. #89
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    Hi guys just reading your stories......

    I'm bel I have a 2.5 year old diagnosed with autism and my DD was diagnosed pdd-nos..

  10. #90
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    I'm Lou, I have two sons who are 3 and 1.

    My 3 year old has Sensory Processing Disorder and language delay closely linked to his sensory needs.

    He is a seeker so constantly on the go. Sometimes it's hard finding people who understand- especially when it's family members- but I try and remain positive.


 

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