ASD dx--How do you begin to process it?

[beachbaby]

DD (5) got an ASD (high functioning, possible Aspergers) dx last week. While not completely surprising, it still hit me hard and I'm not really sure what I'm feeling....Aside from DH, I finally told 2 close friends yesterday after not wanting to talk about it for the first 5 days. We haven't told any other family yet. I've been up and down emotionally. Just wondering what helped you begin to process the dx and move forward. Thanks, mamas.

Edited by beachbaby - 12/20/10 at 11:09am

[Linda on the move]

My spiritual beliefs helped. I believe that my DD is the way she is for a reason. I don't think it's an accident. I don't know the reason, but I believe that every soul comes here both because there is something they want to learn and something they have to teach, and that what ever those things are for my DD, she is exactly perfect for whatever her purpose is.

I've always believed that, but coming to a place of peace about those things for my DD was difficult and I cried a lot. I've also spent time in therapy working on my conflicted feelings about raising a sn child.

I'm sorry for what you are going through right now. I wish you peace.

[bonamarq]

One day at a time....

Not to mimimize in any way your feelings or grief or anything else, but remember several things

Dx does not in anyway change WHO your dd is, but it WILL help you understand her better and channel your efforts on the best way to help her

Disclose as you feel comfortable - and help your dd do the same - I highly recommend Val Paradiz's Integrated Self-Advocacy curriculum you can buy on line and work thorugh the work book at your own pace... it's for your dd (when she gets older but not too early to look at these things yourself) but you will gain some insights as well.

High functioning ASD comes with as many gifts as challenges - while you should do what you feel is best in terms of strategies and therapies etc, the one thing I see many families do and it breaks my heart (and I see this with ASD more than any other special needs category) is the unrelenting pursuit by parents to 'fix' their child. Not that therapies and special diets are not worth trying, but it's a fine line b/w trying to help mitigate some of the symptoms and conveying the message that 'you are defective, I must fix you" -

sorry that was off topic a bit, but being so early on this path I wanted you to be aware of this tricky dynamic parents with children on the spectrum so often face....

[Fay]

I had to allow myself to experience the grief first.  There's only one way across that ocean -- I had to swim through it.

There's a lot you can do to help your child, but you can't do everything all at once.  Just pick one thing that you CAN do, take one step, one day at a time.  Those little steps start to add up into something big and positive very quickly.  :hug:

[beachcomber]

Originally Posted by beachbaby 

DD (5) got an ASD (high functioning, possible Aspergers) dx last week. While not completely surprising, it still hit me hard and I'm not really sure what I'm feeling....Aside from DH, I finally told 2 close friends yesterday after not wanting to talk about it for the first 5 days. We haven't told any other family yet. I've been up and down emotionally. Just wondering what helped you begin to process the dx and move forward. Thanks, mamas.

I find it asolutely uncanny that we are having the same experience. My dd - 5 next week - is high functioning on the Spectrum. Diagnosed at the end of August this year. We're still processing her Dx. It's meant some good things for us - namely funding to pay for the therapies she needs. But it's been a real learning curve for me. I'm still struggling on a lot of levels.

Also slightly eerie that we have also got nearly the same usernames! Welcome to the ASD Twilight Zone, Beachbaby. :)

In terms of how we've dealt with it, well, we have and we haven't. We did tell people pretty much right away. We'd been really struggling to figure out what was going on early in the year. A lot of tantrums, low frustration tolerance, definite gaps being observed between her and her peers at preschool, lack of joining in there, inability to handle changes in her routine, etc. We'd also noticed growing sensitivities to sound and light.

I did a LOT of reading before the assessment which led to her formal diagnosis. I looked into SPD, DCD, selective mutism, and more. We had already determined the SPD but the other symptoms were Autism.

How have we moved forward? Well, I got connected with therapies for her gross and fine motor delays and speech differences before the diagnosis and started that up. Then when the official Dx came in, I got connected to the AFU with the BC Ministry of Children and Families. That pays for therapies specific to Autism for kids. Big help there! I also started reading web sites and going to seminars through ACT (Autism Community Training) in Vancouver. I've been to 2 seminars: one on SPD by Lucy Jane Miller (pre-eminent researcher on the subject) and one on Positive Behavioral Supports for children on the Spectrum by Joe Lucyshyn). Both helped me hugely. Not just for the information they contained but for the community. ACT seminars are attended by professionals and parents in equal numbers so I found some really good community connections. I'm in a small town on Vancouver Island and while I can travel to Victoria to access supports for my DD, there aren't any support groups out here in my community for me. It's hard to go to support meetings during the day because of her therapies, preschool and my DS who is 18 months. Evenings are totally out because she has a sleep disorder. My main supports in real life have been one or two friends who have kids on the Spectrum and these workshops. I think my biggest support has been online through boards like this one. I'm looking into starting a support board for rural and small town folk myself, just because there seems to be a huge need.

Anyway, take it one step at a time. Bite off only what you can chew. Don't try to process too much too quickly. Just focus on the tiny things, the baby steps. If you need to talk, you can count on me. PM me. I'm also on Facebook if you want to friend. PM me for that, too.

Edited by beachcomber - 12/23/10 at 7:33pm

[Linda on the move]

Here is a link to a short essay about processing being the parent of a sn child:

http://www.our-kids.org/Archives/Holland.html

[beachbaby]

Thanks, everyone. I appreciate all the support. I hope y'all understand if I don't respond to each post, but I really do appreciate the support and advice.

[Momsteader]

You'll make it mama!   Those first few days and weeks are so hard and unsure.  My ds is almost 15 now. He received the Asperger's dx at barely 5 along with several sensory/auditory dx that have since been dropped. But at the time, I think it was very common to throw all the labels you could at 'it' and hope insurance would cover as much therapy as possible. I don't know if it's the same now or not.  Later, at about 10, he was also diagnosed with Tourette's Syndrome.   We've homeschooled him from the start, and now at almost 15 most people would never know he's on the spectrum until they really, really get to know him. He had tons of early intervention--so take all they will give and ask for more, more, more!  Our insurance typically doesn't pay for private therapy--they prefer to have you go the school route--but along with our homeschooling and our therapists pushing for coverage as a 'temporary' thing that he would need this much therapy forever(they estimated less than 2 years), the insurance was willing to pay.  He made amazing leaps, and I went to every session I could, observing, taking notes, and 'training' myself to what could be done at home.

As far as telling people, I didn't make a big announcement. It's always been 'need to know'. We told family right away and close friends for support. As he went to so many therapies people asked questions and we answered. Now, the Asperger's isn't really as big an issues as the tics with Tourette's. He hasn't had to endure the constant teasing/stress of school, so interactions he does have with peers he can handle pretty easily. He loved soccer, but never was very good at it--coordination issues. But, he kept at it, and something clicked at about 12 after 6 years of playing, and now he's one of the 'star' players on his rec league and people look to him for advice on playing. He even assistant coached an under-6 team this year and did really well. Most people with kids this age are dealing with the snotty teenage years and hating their children. We can't get enough of him! It's so amazing to me to see that he's developed this very sarcastic sense of humor that probably would seem inappropriate to some from the outside, but this is a kid who everything was black and white and he didn't 'get' jokes for so long. To see him making them, is so great.

Probably long and overly detailed...but just take it day by day! There is so much hope! My kid is so cool and amazing and I cannot imagine him any other way. He is who he is, and we adore him. Read everything you can get your hands on and just love him and support him and do what feels right for you guys!!!

[beachcomber]

Holly, thank you so much for sharing your son's path and your experiences with him. As a mom to a newly Dx'd kid on the spectrum, it's really encouraging to hear stories like yours and his.

[Lollybrat]

To be honest, the first thing I felt when we got the ASD diagnosis was relief. It gave me an explanation for DS's difficulties and let me know that his developmental issues were not due to my parenting choices (as some family members had been saying.)

Afterwards, the feelings of being overwhelmed, sad, and lost kicked in. One thing that really helped me was finding a local support group. Meeting face to face with other moms who were going through the same thing helped tremendously. Meeting their children helped me understand my own son better. And these moms have proven to be a great source of information, support, and friendship over the past few years.

[sbgrace]

Time helps most. I think that's true of any grief process and for most of us there is a grief process. You're in that.

[beachcomber]

Originally Posted by Lollybrat 

To be honest, the first thing I felt when we got the ASD diagnosis was relief. It gave me an explanation for DS's difficulties and let me know that his developmental issues were not due to my parenting choices (as some family members had been saying.)

Oh goodness, Lolly. This has totally been my experience to date. We got loads of unsolicited advice from family about DD's "issues" prior to diagnosis. Especially around sleep. She has a sleep disorder and we tried so many techniques to get her sleeping through the night. She still doesn't. At least now people have shut up about it.

Like you, we felt relief at first as well. Mainly because we had something that explained the list of issues we'd found ourselves dealing with. But I've been going through the grief as well.