How do you deal with this?? | Autism PDD

Thanks everyone for your support! I am glad to know I am not alone in this at least.. I hope things will get better for all of us who are going through this.. Thanks for the links norwaymom, I will check them out!

Hi Jen,

my ds is 7 yrs old and still non-verbal. It is still hard to know what the triggers are all the time, but over time we've found Zach has to eat every couple of hours during the afternoon and that has stopped a lot of meltdowns (hypoglycemic). His other huge trigger is exhaustion, but that one's much harder to deal with since he constantly fights sleep.

Do you use PECS or something else for communication? We don't use anything at home, but they use PECS at school. He understands most of what we say, and will quickly find a way to get what he wants if we don't know what he wants.

We started using some behavior meds when Zach was 3-4 yrs old, it's not the perfect solution, but there's been many times when they have literally saved our sanity. The meds that are usually used for ASD kids have not worked well, Zach gets all the bad side effects, and little benefit. For some of our kids a better option is an anti-epileptic drug (AED), they are often prescribed specifically for behavior. We use lorazepam on the worst days, it only stays in his system for 4 hrs, but it immediately calms him down, and wakes him up. We only use it once in a while, since it can be habit forming.

When you have a non-verbal and aggressive child it is worth taking the time to discuss med options with yr dr. Not only does it help give our a family a break, but more importantly our child gets to calm down, his body needs the break from all the frustration and aggression.

Good luck.

For us, 3 years old was a tough phase even though our son was fairly verbal. Everything was a fight -- diapering, dressing, shampooing, brushing teeth, etc. It was exhausting.

When my son finally got the diagnosis at age 7, two things made our lives easier - identifying his sensory issues (I didn't even think he had any, boy was I wrong!) and developing a plan for escalation/meltdown.

Here are some tools that should help you in those areas:

http://www.autism-pdd.net/forum/forum_posts.asp?TID=17134&am p;KW=meltdown+resources - meltdown resources. Other mothers on this forum have said they're helpful, even life-changing.

http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html - sensory checklist. Also take some time to browse around their website if you can.

Good luck with everything!

Jen

Sorry you are going through this...it has been years since Sarah has was nonverbal and though she wasnt aggressive the 3 hour tantrums were horrible...it does get better and less frequent but it took hours of ABA to get her to talk and extinct the tantrums for us. I just wanted to hold her till they stopped and it only made them worse. She never tantrums now but boy can she whine:P

The early years are becoming more blurry just so you know:) Hang in there:)

Look at the PECS website. They have PECS seminars and they have a summer session which is 2 weeks -- I think. There are a few good books that describe the whole PECS program.

You can spend alot of money on the PECS icons and folders. There are many websites that tell you how to make them at home.

Sarlet has huge problems with her irritability, we started her on a very small dose of Risperdal which has helped a little. But as I always say to parents with non verbal or not very verbal kids, Please try PECS. A lot of the problem with kids can be not being able to let you know what they want. For Sharlet it helped her immensely, she now has around 150 cards in her pecs book each enabling her to ask for something. PECS also gets kids talking in my opinion. Give it a try if oyu haven't already, I think it can be just as valuable as ABA and for some kids more so. You have nothing to loose. Good Luck.

I appreciate the suggestions.. My mom keeps telling me that I need to use something to try to help my son communicate.. I am curious, how do I get started using PECS? I appreciate any advice. Thanks again!

Jen

Thanks UTBcool! Which websites show you how to make your own?

jen78fl39340.853287037

Here's an article on a website I like that describes the basics of pecs and the various phases of use.

http://www.polyxo.com/visualsupport/pecs.html

This is another one of my favorites and includes free visuals for a huge variety of everyday settings (school, home, community).

http://www.setbc.org/pictureset/

Good luck getting started.

Thanks everyone!

FYI:

Assistive Technology:

"Many states have non-profit foundations which support the lending of resources. These resources range from extensive libraries of sensory integration toys, augmentative communication devices, and games or puzzles designed for individuals with disabilities to simple software or low tech devices. [...] States without lending libraries still have people trained to help with information and referrals for adaptive technology needs."

Here's the link to the list:

http://www.sandbox-learning.com/default.asp?page=29

Just wondering, is anyone using augmentative communication devices? I have been looking around on the internet and found some that look really good...

http://www.dynavoxtech.com/products/

Is anyone using any electronic devices similar to these? Do they help? I appreciate any info on this. Thanks!

In these types of situations, this behavior can be caused by sensory overload. The best ways to deal with these are by incorporating sensory integration activities into your day, everyday, and to have the professional guidance and treatment offered by an Occupational Therapist. OT’s are another group of people sent from heaven, plus they’re usually really peppy, happy people. I don’t know why, but OT schools just draw in these kinds of people—they just like to have fun, which works out really, really well for the children they work with!

Other types of behaviors are ones that occur because of a communication breakdown. Behaviors are a form of communication—your child is telling you something when they are having one. We’ve learned that children can have behaviors because of sensory problems but they can also have them because a lack of communication skills. Think of it this way, if your child is nonverbal with no alternate form of communication, you have to speak for your child. A lot of that is based on guessing or assuming that you know what your child wants. What if you’ve been guessing wrong? What if you guess part of it correctly and part of it wrong? For example, say you’ve been able to figure out your child wants pizza. So you take you child out to Papa John’s and he or she FLIPS out and just completely loses it. You thought they wanted pizza, what went wrong? What if they wanted pizza, but wanted to go to Pizza Hut and not Papa John’s? The ONLY form of communicating the non-verbal young child has in his or her arsenal is a BEHAVIOR.

The approach that comprehensively deals with many behaviors and meltdowns involves sensory integration treatment with an Occupational Therapist and speech therapy with a Speech Therapist, AND an alternative form of communicating.

[QUOTE=jen78fl]

Just wondering, is anyone using augmentative communication devices? I have been looking around on the internet and found some that look really good...

http://www.dynavoxtech.com/products/

Is anyone using any electronic devices similar to these? Do they help? I appreciate any info on this. Thanks![/QUOTE]

I use a VMax, and like it, although there are parts I have cognitive trouble with, specifically getting used to going from one page to another to find something. The good thing is they're fully customizable.
gtto39341.5879398148

Hi everyone.. Well I am just really stressed out lately. My son has been so irritable and hard to deal with. He cant talk so of course he cant tell me what is bothering him.. So I just have to guess.. I feel like I am going crazy sometimes when he just keeps crying (and getting aggressive) and theres nothing I can do to help him.. Its so frustrating.. About the only time I have with peace and quiet lately is when my son is at school.. and Im usually working or sleeping then. Anyway, I guess I just feel like I dont know how to deal with this sometimes. I dont really know what to do for my son to help him.. He has an ABA therapist that comes once a week and he is getting ABA in school but I am not sure if its really helping.. Maybe one day it will but I dont know when that will be. I guess I am just feeling like things may not get better.. I dont know.. I just wish I knew how to deal with him better.. Anyway, I dont really have many close friends to talk to about all this, and that makes things worse at times.. So I appreciate all of you listening...

Jen

Jen- I totally know how you feel! I could have wrote part of your post! THeir are so many times when my ds cries and I have no idea why...its like solving a mystery in a state of panic. He had a great week at school, and I was telling some people how good he is doing, and then tonight right before bed he had a HUGE meltdown

He receives about 40 hours ABA a week. They tell me to ignore his behvior and he will realize that it does not get him anything.

Yeah-- His therapists are young, no children. You know how we were when we had no children -- Oh!!! I will never let my child get away with THAT - and so on.

It is so hard on the non-verbal kids.

I have been going through the same emotions with my 2-1/2 year old ASD ds. He is not talking yet either and he's so frustrated that he constantly whines and cries b/c he doesn't know what else to do. He also gets angry and throws toys and is just miserable. He knows a handful of signs and can make word approximations but it's still so hard to communicate all I think he wants to say. I hope his behavior will improve as he learns to talk but I don't know when that will be. It's very frustrating for everyone involved and I'm just trying to hang in, hoping that the therapy he's getting will work and life will get easier all around.Thanks RozoneJen ur not alone. Im sure lots of people on here HEAR u...and feel for u. For me, knowing My family and I arent alone in this and have this board, makes me feel better!!

Jen