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RE: My world is crashing...

sinking71 — Mon, 06 Feb 2012 10:22:35 GMT

Thanks CQDad.

My son will be going for his paed assessment on Wednesday. I believe the child psychologist might have given him a call as she had promised. Funding will be decided after the assessment by the paed.

Regarding childcare, we are thinking of letting him continue two days, but half day only each day.

Will post after we meet the paed.

RE: My world is crashing...

CQDad — Sat, 04 Feb 2012 08:55:19 GMT

Hi and welcome. As others have said, you need to let your feelings and emotions settle and then start to work out which way is up and what are the next steps. My son was similar to yours 4+ years ago. My suggestions (only based on my experience) would be

get the Australian Autism Handbook

look at websites for the peak ASD organsiation in your state ie Aspect or Autism Queensland - you will need to contact them after your DX for support funding etc

start thinking about speech therapy

use his interests to create an avenue for communication/interactions and join in.

be wary of day care - my DS spent his whole days playing with sand and water and each time when we picked him up...he had a great day today we were told....as soon as you have your DX, they should be able to apply for some funds to help but make sure that this resource is not wasted on the whole group. My wife ended up going part time and then quitting her job and did EI at home - daycare was just that...they did not help much...just be sure that his time there is positive and learning

My first day after I worked out that DS had ASD was a mess - it was like someone had split me in two with an axe.....

Take care,

CQ Dad

RE: My world is crashing...

davidtrainman — Fri, 03 Feb 2012 20:01:17 GMT

Hi and welcome. I reiterate you have not failed your lad, and it is a matter of one day at a time and learning bit by bit. I am a dad too and its 'different'. it is hard being parents but I am sure you love your lad/children and will d your best
regards

RE: My world is crashing...

jasntan — Wed, 01 Feb 2012 22:32:36 GMT

Hi and welcome.
Like the others said its pretty normal to grieve, just remeber he is still your little boy and think of all the good things about him - he wants to play the Wii with you, thats a great thing, he may not play today but tomorrow he might just pick up a controller.

I just have a quick suggestion that may help, I have just finished reading a book that I found really helpful and I will be buying a copy for the extended family to read. Its called "10 things every child with Autism wants you to know." or something very similar. It explains things very basic and easy to understand and is a really positive book.

RE: My world is crashing...

sinking71 — Wed, 01 Feb 2012 22:29:42 GMT

Thanks everyone for your kind words.

My DS goes to childcare 2 days a week, and we did ask the psychologist if we should continue sending him and she suggested that we let him continue 2 days for half a day each. This is not possible at the moment as my wife goes to school for 2 days and that's why he has to go to childcare. He usually cries a lot when he reaches there but today he did not cry. Another thing is that he is not toilet trained. Childcare wanted to move him to K3, but we held him back as we thought it might be too much for him to bear.

RE: My world is crashing...

shaz74 — Wed, 01 Feb 2012 16:36:09 GMT

sinking71 (1/02/2012)

...

Recently my son has started trying to say milk. He can only say "Mi". He will open the fridge and take the milk bottle out and come to us saying "mi". So we give him milk.

He loves playing with his elder siblings (elder brother 7 and elder sister 4). ...

Hi, welcome to the forum.

Big hugs from me. As Sue suggested, you are probably in shock and that is completely understandable.

You are a great parent that is doing the best for your DS (son). You are getting the help he needs and that is very very very important and clearly shows that you have not failed at all. In fact you are doing the complete opposite of fail. You are doing a fantastic job of things.

Definately make a list of all the things you are concerned about to the paed. I'm sure this could form the basis of questions for you. I'm also sure the paed will have questions as well.

The fact that the psyc will call the paed before your visit is great. The psych may have picked up on some things that you may not have thought of.

The fact that your DS is able to go and get the milk out of the fridge and say "Mi" is fantastic. I'm not a speech therapist but it sounds to me like he's initiating communication which is a great thing. (Unfortunately my DS needed help learning how to do this at that age). Also the fact that he likes to play with his older siblings is fantastic too.

By getting an early assessment and dx (diagnosis) means early intervention can be started early and progress will be amazing I'm sure.

You and your wife will probably go through many different emotions and that is a perfectly a normal thing to happen. It will feel like a roller coaster ride but eventually things start to fall into place and as therapies (early intervention) begin to help your DS progress, you will feel pride at each new thing he learns.

Please keep us posted on your progress.

RE: My world is crashing...

SueBooklover — Wed, 01 Feb 2012 15:11:11 GMT

Dear sinking71,

Give yourself time, you are in shock...We all went through some sort of grief reaction at diagnosis, no matter how prepared we are.

Information about what your boy can do and what he can't do can only help the paed with getting to know him. It's actually really positive he is trying to communicate with you and ask for milk!

Keep a notebook with you over the next couple of weeks, and every time "I wonder what..." crosses your mind, write it down. Don't worry if you don't have all your questions down for the paed there is plenty of time, you can always make another appointment.

Most of all, you and your wife be kind to yourselves and each other over the next few weeks. Give yourself time to process and don't feel like you have to jump into everything running - you have got your son diagnosed so early, that is wonderful and can only be a help to him.

And lastly, you are a great dad!
Hugs.

RE: My world is crashing...

sinking71 — Wed, 01 Feb 2012 14:50:21 GMT

Thanks for the hugs.

Even though I am at work today, I am unable to concentrate on anything. My mind keeps wandering and I just keep thinking of my little boy. I have no idea what the assessment at the paed will involve. The psychologist who gave us the assessment yesterday said she can call the paed before our appointment in 2 wks time if we want. We just said yes. Don't really know if it is good or bad.

My son loves playing with the trains esp. the train crossing. Makes the boom gates go down and then make a sound as well to imitate the ringing bells.

He is also interested in Mario Kart Wii. Even though he does not play himself and gets me to play for him, he enjoys quite a lot. Knows a few things in it. He can't say Mario Kart but instead says (Waa Waa Wii). I brought up this when we had a meeting with psychologist yesterday, but my wife wasn't impressed. Not sure I should mention this to paed.

Recently my son has started trying to say milk. He can only say "Mi". He will open the fridge and take the milk bottle out and come to us saying "mi". So we give him milk.

He loves playing with his elder siblings (elder brother 7 and elder sister 4). He loves to go out and can even balance a bit on the kick scooter. We can go for a long walk and whole way he will be holding his scooter and walking and sometimes he rides it.

As was suggested that I make a list of things to ask to the paed. I think that is an excellent suggestion. Although atm, I am not sure what to ask as my brain is frozen.

Thanks again all for your input.

RE: My world is crashing...

julesk — Wed, 01 Feb 2012 12:30:39 GMT

*HUGS* to you, sinking71.

Can I just say to you bluntly, YOU have not failed your son! Please, whatever you do, start telling yourself multiple times per day so that you will believe it one day. I would like to point out that you are seeing specialists etc to have him diagnosed and get help for him ... that's the opposite of failing in my book. You are doing your utmost to help your child. That makes you a great parent.

I know it is scary this new world you have stepped into. Most of us feel like the world is crashing down on you when we first hear those words, even if we know what they mean, or if we were expecting them.

Most of us here have a period where we go through something that can only be descibed as grief. That's ok. Give yourself that time to do that. I personally walked around in a state of shock for a few weeks. Still functioned but my mind was somewhere else. It's ok.

As you learn more about your son's diagnosis and how you can help him your concern will fade a bit. You'll build a new world with your son. I can tell you from experience, although it is hard work, the new world can be so much better than the old one - if you let it.

Practically, get a letter of diagnosis from your Paed. Make a few photocopies. Then get in contact with your state's Autism Advisory service. In QLD it's done through Autism Queensland. If you let us know what state you are in, someone can point you in the right direction. They provide funding to help with early intervention.

Most children on the spectrum seem to attend Speech Therapy, Occupational Therapy or ABA. Your paed might have some advice? Some find alternative therapies or diet help (that is the case with my child but I know not all respond as he has). Some find a good psychologist very valuable. Unfortunately a lot of this is trial and error as each child is different. I'm sure the lovely parents on this forum will help you find your way.

There is help and loads of information out there. And of course, we are here to listen, answer questions and give suggestions.

RE: My world is crashing...

celestia — Wed, 01 Feb 2012 12:21:04 GMT

Hi and welcome to the forum. You have just received your diagnosis and it can be really tough for a few weeks. It is quite normal to go through a range of emotions including grief, denial, anger, frustation, guilt. I don't think you have failed him at all. You have got him diagnosed already and this is the first step in getting him all the help he needs.

He is young and early intervention is considered very valuable in ASD. Consider writing down all the questions you have for the Paed visit so you don't forget anything as it can be quite overwhelming. Most children need speech therapy and/or Occupational therapy. My DS was diagnosed only at the age of 7 yrs so I cannot tell you the details about early intervention but there are others on the forum who might be able to help.

earlydays.net.au has workshops aimed at parents whose children have been recently diagnosed with ASD and it can help to meet other parents who are in the same position as you. Good luck and keep posting any further questions you have in the main section where many more parents can see them.

cheers,

RE: My world is crashing...

ellie1326 — Wed, 01 Feb 2012 11:12:52 GMT

just wanna send you hugs. It is so hard.

My world is crashing...

sinking71 — Wed, 01 Feb 2012 10:23:24 GMT

Hi All,

My 2 year and 9 months old boy got diagnosed as ASD yesterday (we still need to have an assessment with paed in 2 wks time). The CARS score came was 36. Is there anything I can do to help my little boy? He does not speak much, a few words here and there. Loves trains and some Japanese videos - tries to sing and dance.

I am really concerned as I have no idea about ASD apart from what I have read in the forums. I am not sure what to expect for the future. I am really sad since yesterday, and almost in tears. I think I have failed him.