Wednesday, August 13, 2008

Who Needs Training Children or Adults with Special Needs or the Community

Most parents who have children with special needs understand all too well what happens when there is confusion over “what we doing” or “where are we going”. Many of us spend hours preparing schedules or visuals to help prepare our kids for understanding what is expected. Changes can create such confusion for our child that he or can have a meltdown, sometimes in a public place, or in refusal to go or to do what is necessary. Some parents have said it feels like being held captive to our child’s reaction.

It seems there is a misunderstanding between everyone involved at times. A child may seem to be unreasonable about his need for consistency. To the outside world a minor change in schedule is a part of life. Flexibility to go with the flow of life is a good trait to survive in this hurried up world but it is not something that is natural to many of our children. A pediatric neurologist once explained to me that when you change the routine of a small child they will get hyper but if you change Billy Ray’s routine it is like taking him to a foreign country where he doesn’t understand the language. The confusion is overwhelming to him so he might flop on the floor unsure what to do next. He can literally get stuck.

Inconsistency from all parties involved impacts the situation greatly. If parents don’t adapt the plan to what will work for our child as an individual and prepare them for an event or task, it is less likely to work. I have been more aware of the fact that Billy Ray lives in a world of people who are less regimented than he needs to be and have their own lives full of demands and details. If he is waiting 30 minutes because someone is late they may have little concept of how confusing that is to him.

I wrote about the temperamental mismatch that Billy Ray and I experienced relative to organization here. Having worked through that with him substantially it has become obvious that he has somewhat of a mismatch with other significant people in his life and the community as a whole.

Maybe it is just me but it seems that the lack of understanding and actual intolerance is growing rather than the community awareness we advocate for. We have a Catholic Church getting a restraining order to keep a 13 year old boy with Autism away from their services. I have written about that on my other blog here. If even churches fail to adapt to the needs of members who have special needs how can we expect family, friends and the community to.

To compound it we have radio talk show host, Michael Savage describing Autism as "A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out". See here for more details on his comments.

Thus, the question of the post title who needs the training, the child or adult who experiences special needs or those who don’t experience special needs. The sad thing to me is that it is sometimes easier to adapt and teach people with special needs than to teach tolerance and acceptance to some who don’t have that experience.

Until next time,

Peggy Lou Morgan
www.peggyloumorgan.com
www.lighthouseparents.com
www.parentingyourcomplexchild.com

and blogs at:
http://parentingacomplexchild.blogspot.com
http://parentingacomplexadult.blogspot.com

7 comments:

Erin said...

I enjoyed this post. It seems to me that a lot of parents who have children with special needs are armed with a lot of information on how to best help their child(ren) survive living in the "normal" world. The outside world doesn't understand the planning that must go into each and every time you leave the house... and doesn't understand the need.. since "my kid" doesn't need that kind of attention, why can't yours get a grip. It's nice to come across people who don't judge when your child is freaking out in the store and try to be helpful (even if it causes more meltdown... at least they aren't shooting dirty looks your way! LOL)

Anonymous said...

What works is raising awareness for autism. Most people have no real understanding of what it is. There is this singer, Elyse Bruce, who put out an album called "Countdown to Midnight." The album is finally getting radio airplay. On the CD insert is autism awareness information and part of the proceeds sale of the CD goes to autism charity.

People like good music. If they come to associate autism with good music, perhaps they will think autism is good.

The CD is available online.

Anonymous said...

Peggy, I found your blog on a google search. I am currently going to school for a master's degree in special education. I am taking a class titled "working with parents of young children with special needs". I was wondering if you were able to give me honest feelings and personal experiences you have encountered as a parent of a child with autism.
Thank you, Heather

Peggy Lou Morgan said...

Heather: You can send me your email address or you might want to join parentingyourcomplexchild@yahoogroups.com and get feedback for more parents.
Peggy

KC's Blog said...

As Erin said, the world outside just doesnt understand. I feel like that alot especially now that Adam does out in public with us alot. The stares have tripled. Big Brother gets really angry sometimes that people are oogling the boys, it's sad that people do that.

Lora said...

Hi Peggy Lou, It is true that the outside world has little understanding at least until they are informed that my child does indeed have autism and then I find that they are very understanding. When Griffin has meltdowns in public and is lying on the floor, I can't pick him up because he is too big so if someone is nearby I simply explain that he is having a hard time because he has autism and immediately their expression changes and they offer help.

I haven't really told anyone but several months ago we found out that Griffin is also Bipolar and he is now on Abilify which is working quite well. So I am reading your book again and it is so helpful. Things sure do change when there are multiple diagnosis. I thought that life was a challenge before and NOW it truly is! I will try to keep in touch much better and visit your blog(s) more often but now that we are doing home school there just isn't much time to spare. I hope that you and Billy Ray are doing very well. Let's keep in touch.

Dr.Rutledge said...

Hi Peggy Lou,
I'm an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you in the Autism & Autism Spectrum Community on Wellsphere, a top 10 health website that has well over 2 million visitors monthly.

If you would like to learn more, just drop me an email to Dr.Rutledge@wellsphere.com