Understanding goes SUCH a long way!

Page 1 of 1 [ 5 posts ] 

2PreciousSouls
Snowy Owl
Snowy Owl

User avatar

Joined: 20 Jan 2009
Age: 54
Gender: Female
Posts: 138

14 Oct 2009, 4:45 am

I feel so blessed having had a diagnosis for my son.

Before dx we assumed our son (3yo at the time of dx) was troubled by things relating to our move interstate as well as a new baby sister arriving... he was displaying many emotional reactions and ocd behaviours, and seemingly showing jealousy towards his younger sister...we also assumed (which we now regret) that he was being a difficult spoilt first born and would punish him by taking his toys from him... Things however just escalated which led me to seek help from a child psychologist.(Who later dx him with mild autism)

Since the diagnosis almost a year ago, we've found immediate and consistant improvement (despite only just recently recieving early intervention)...

We've been researching, researching, and more researching, joining parent workshops and doing every thing we can to learn about this disorder... enabling us to understand the reasons behind his behaviours and looking deeply at things from within HIS world and from HIS point of veiw. We are more relaxed and don't stress the small stuff at all anymore. We give him loads of extra love and support when he is having a meltdown and accommodate his "special" needs in every way we can... particularly with empathy...

I feel the no 1 key to his improvement has been "understanding" him and his needs... I feel that he knows now that we just "get" him and accept all of him and his behaviours and work with him not against him. I know that our attitude makes a world of difference to the behaviours. (We have a couple of friends and family who dont understand the condition...and clearly he is extremely tense and plays up whenever they visit)

Have you seen a noticeable difference in your childs behaviour somewhat immediately after getting the diagnosis alone?

What are the things that have made noticeable improvement in your childs behaviour?



annotated_alice
Veteran
Veteran

User avatar

Joined: 25 Mar 2008
Age: 49
Gender: Female
Posts: 720
Location: Canada

14 Oct 2009, 8:32 am

Yes, absolutely! One of the biggest things for us has been being able to significantly reduce the amount of meltdowns. We had done everything the "experts" say as far as consistent, predictable consequences, rewards etc., and it was so frustrating and confusing to have smart, generally cooperative kids that 100% knew better still having "tantrums". It just didn't add up! Now we know to look for sensory triggers, and have all sorts of strategies for helping them with their stress, because we understand what's going on.

It's a relief. It is like finding the Rosetta stone. So much makes sense now, and we can help them so much more.

One of the biggest changes is happening at school. Last year was our first school year with the diagnosis. We had a whole list of recommendations from the dxing psych, but didn't know exactly what our sons really needed. It was trial and error. One of our sons appeared to be doing great, with very little special accommodations, but by the end of the school year his stress levels were so high that he was truly in misery. Lesson learned. This year I went in there with clear ideas about what to ask for and what to push on. We also finally have all the local support agencies for ASD kids involved. Now there is a team working on behalf of our sons' well being, and they have access to all kinds of special help, but most importantly we see our sons being accepted for who they are and where they are at, and the staff is making huge strides in educating themselves about autism/aspergers. This has been our best start to a school year ever! (grade 4)

I've heard a lot of people express concerns about their child being "labelled" because of the dx. and all the negative that could come with that, but for us finally understanding what is going on has been overwhelmingly positive. :)



DW_a_mom
Veteran
Veteran

User avatar

Joined: 22 Feb 2008
Gender: Female
Posts: 13,689
Location: Northern California

14 Oct 2009, 4:19 pm

Getting a diagnosis was like being handed a key. Of course, it took a little time to learn how to use that key (THANK YOU so much to ALL AS who post in places like this and share how things are for them), and it will never be perfect, but I agree that UNDERSTANDING is 90% of the battle. Changing how we parented our AS son brought positive change to our household. If someone would just hand us a key for our NT daughter we'd be all set.

We live in a world that, in many ways, is just so wrong for our kids. Crowded, noisy, overwhelmin g, fast. In ways that I don't think existed 100 years ago. Tuning into that helps so much.


_________________
Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).


eeyore710
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 10 Jun 2009
Gender: Female
Posts: 49

15 Oct 2009, 11:49 am

I agree...the diagnosis was a huge relief for us and has made all the difference in the world. At home, it has caused us to examine every "behavior problem" and her dad and I work together to isolate whether it was really just bad behavior, or was it behavior that was triggered by something she had no control over. We've figured out that she rarely misbehaves except in reaction to sensory issues or lack of perspective taking so it's made the house a much more pleasant place.

I would say the biggest difference is at school. Now that we have a school staff that understands and truly cares about helping my daughter succeed, we have gone from tears almost every day and fake illnesses to try getting out of going, to a child that is upset if she's 3 minutes late to school because she might miss learning something. She even made a card for her advocate that said "Thank you for doing everything you can to help me like my school" with a picture of the school and hearts drawn all around it. This is a dramatic change from a year ago.

I have seen progress every day since the diagnosis, and find my eyes tearing up several times a week as I see her reaching milestones that I never thought she would. When she put the earplugs in her ears to go to music class at school, and several kids came over and told her how cool they looked and how lucky she was to get earplugs (rather than teasing and bullying her)....when she asked me if she could invite a classmate over to our house for a playdate....when her grandma made her a weighted lap pad and she sat calmly and quietly for the first time...it's kind of like watching your baby take her first steps.

When we got her IEP, I looked at my husband and said "can you imagine how much better life could have been for us if these things had existed when we were her age?" and his response was "I try not to think about how much I've missed due to a lack of understanding and how much punishment I endured for things beyond my control. I just try to focus on the fact that the cycle stops here and that our children will benefit from the fact that things have changed so much and that they won't have to go through the things we did." I, too, have seen a lot of parents not liking "labels"...but for us it's been a blessing, and both my husband and myself wish we had had the opportunity to get the label ourselves:)



DenvrDave
Veteran
Veteran

User avatar

Joined: 17 Sep 2009
Age: 59
Gender: Male
Posts: 790
Location: Where seldom is heard a discouraging word

15 Oct 2009, 11:54 am

eeyore710 wrote:
I try not to think about how much I've missed due to a lack of understanding and how much punishment I endured for things beyond my control. I just try to focus on the fact that the cycle stops here and that our children will benefit from the fact that things have changed so much and that they won't have to go through the things we did.


Isn't this what being a parent is all about? Working hard to make sure the world is a better place for our children and, ultimately, all people. What a great attitude! :D