A Different Kind of Roadtrip:Parenting a Child with Autism- Debra Elder

The opinions and statements made in this chat session belong to the individuals posting them and appear in unedited form to promote the free exchange of information. However, they may not represent the views and/or policies of the Georgia Center for Resources and Support.

Gigi: Before we get started I think that Debra would like to share some news with us.

Anglhrtsmom: Thank you Gigi. Yes, I do have some exciting news. I just found out, last week, that I have been accepted as an Ex-Officio member of the Governor's Council on Developmental Disabilities.

Anglhrtsmom: As Parent/Family Mentor for Dawson County School system or the Governor's Council?

Anglhrtsmom: As Parent/Family Mentor for the school system, I try to be a communication bridge between the school and the parents. I am also a resource for parents to access outside agencies and just help them, in general, through what we call the "maze of special education".

Anglhrtsmom: As an Ex-Officio member of the Governor's Council on Developmental Disabilities, I'm not real sure yet was I haven't had my first orientation meeting. Through my training in Partners in Policymaking, though, I know that the GCDD is the strongest link between the disability advocates and our State Legislators.

Anglhrtsmom: Honestly, I'm a little nervous about it. I was comfortable taking the Parent Mentor position because I am the parent of a child with disabilities but the GCDD still seems like a dream to me.

Gigi: Do you think that the majority of families you work with have children with Autism?

Anglhrtsmom: I think that the families of children with autism have, in the past, had a much stronger voice and that is why it seems like there are so many more families who have children autism. We do know, though, about the substantial increase in the rate in children diagnosed with autism over the past 8 to 10 years.

judy: I have a child with aspergers syndrome. He has a high IQ but significant social delays along with implusivity. He is in 6th grade. What have you seen as the best supports in the school system in this situation.

Anglhrtsmom: Hi Judy. I think it really depends on the school district. Unfortunately, there are too many differences in how children with disabilities are being "included" and whose definition is being used. Does he have a parapro or is there some other type of extra assistance in his classes?

judy: This year he has quite a bit of support. He is in general ed all except one segment and is resourced for this segment. He has his own full time shadow to assist him. We are struggling with the fast pace and demands of middle school.

Gigi: My son is autistic and he has student mentors that come and get him and take him to special events like FCA meetings.

Gigi: It was only because of a parent who had a child at this school several years ago that we now have student mentors

Anglhrtsmom: From the time I am spending in the schools in my district, I can see how challenging middle school is even for children without disabilities. What Gigi just said is something I was going to ask you about. Does your son have anyone (like his shadow) who can try to get him into more social settings? Also, what accommodations is he being given as far as being able to meet the demands in middle school?

Anglhrtsmom: My question regarding more social settings is because often, peer role models are the best "therapists".

Gigi: Our middle school has also started an adaptive PE. I have been very pleased with this.

Anglhrtsmom: You are very blessed to have that, Gigi. It's rare, unfortunately.

judy: I have not discussed "buddies" with the team this year but this reminded me that I need to do this. His shadow asked someone to sit with him at lunch and is trying to help him not be isoldated during this time. They have no other free time. The launguage arts teacher discussed reducing the number of problems he is given to allow him to stay on track with the rest of the class. We are beginning our second week of school and are just realizing where the supports need to be for the new environment. I am sitting in on some of his classes this week so I can have better insight.

Anglhrtsmom: All wonderful ideas, Judy. Other parents could learn from what you are doing. I think what the language arts teacher said would help. How does he do with math? I know that sometimes even folding the paper so the student doesn't see all the problems at one time helps a little. It really is hard to develop an appropriate accommodations/modifications plan without seeing where our kids are going to need help first.

Gigi: The "mentors" take a special 9 week class in order to become mentors. I have had kids from church telling me that they can't wait untill its there turn to take the class.

Anglhrtsmom: Gigi that is wonderful! It is so important for children, all children, to have friends and feel like they "fit in" somewhere. This peer mentor program seems absolutely wonderful!

Laveda: Hello Debra, Can you tell us what the Parent Mentor's role might be with parents in the school trying to obtain services for their child w/Autism?

judy: Math and Science are his strong and favorite subjects. He has had NO problems in math. He also has technology as his elective for this six weeks and is very excited about this. He is in the gifted program and this will begin in a few weeks and meets weekly. The gifted program is a great socialization experience for him and the students relate to him better. .

Anglhrtsmom: Hi Laveda. In situations like that, I try hard to be a communication bridge. Too many times, parents and school personnel really are on the same page but don't speak the same language, if that makes any sense. In other situations, people don't always realize the difference between therapy offered through a school system and therapy given in a hospital/clinical type setting and what the purpose of each one is. The Parent Mentor can try to explain things to both parent and school personnel to try and meet in the middle somewhere.

Anglhrtsmom: Judy - I'm not surprised about him relating betting with the kids in the gifted program. When kids can see past differences, wonderful things happen.

Anglhrtsmom: Sorry for the typo...relating better is what I was trying to say.

judy: How do families in general lear about the Parent Mentor program? I have never seen anything directly from the school. I learned about them through the Gerogia Center.

Laveda: How available are you and your colleagues to parents? Do you work full or part time?

Anglhrtsmom: Unfortunately, not every county has a Parent Mentor yet. When the program first started back in 2001, there were 4 mentors. We now have 64 mentors serving 55 counties and 130,000 students. All districts haven't "bought in" yet to the idea of having a parent on the inside, so to speak. Most parent mentors, when they first start, will send out a flyer or newsletter letting parents know they are available.

cindy: what extra challeges do foster or adopted children have who are autisic?

Anglhrtsmom: Laveda - some districts have full-time mentors but most are part-time. However, you (the parents) are the reason we are here so we are very available. A Parent Mentor is different from an outside advocate though. Having been trained through the Georgia Advocacy Office's Parent Leadership Support Project, I am also an education advocate, trained in special education laws, and help parents in other counties when they need an advocate to assist them.

Anglhrtsmom: Hi Cindy. Since I am not a foster parent, I will beg all of you to please correct me if I am wrong. I can only assume that when a child is put into a foster care setting that the were not in a very nurturing environment to start with, for the most part. I know there are many reasons why children are given up for adoption or put in foster care. I do realize that. The only point I'm trying to make is that children who are autistic or have other special needs really need stability at home so I would imagine their behavior and emotional issues can be much worse or much more challenging in that situation.

Laveda: Debra, would it be possible for you to send the GA. Center an updated list? We lost our contact with the Program when Debbie Bailey left Fulton County. That would certainly help us with sending referrals your way.

Kim: Do you find it is harder to recieve services for children with emotional problems verses physical, and if so do you have any suggestions for parents in this situation.

Anglhrtsmom: Yes, I can do that without a problem. Just let me know where to send it to.

Anglhrtsmom: Hi Kim. Unfortunately, sometimes that is true. Some people still don't believe in things they can't see. That, of course, means that children with emotional or behavioral disorders are judged by their behavior...even by people who should know better.

Anglhrtsmom: Since we all know that Autism is actually a neurological or neurodevelopmental disorder and not an emotional or behavioral problem, it's frustrating for us to see our children judged like that.

cindy: do you have any suggestions or advise to help the foster/adoptive parent when autisic children first come to there home to help them settle down this is scary for any child but with communication problems it will be worse?

Anglhrtsmom: I highly recommend picture symbols. Even if a child is verbal, sometimes they "lose their words" when scared, excited, upset, frustrated, etc. Those picture symbols can be a life-saver in situations like that. I know that it's hard to have a calm and quiet house 24/7 but if you can provide a safe place for the child to be (a tent, blanket to cover with, AirWalls room, etc.) where he or she will feel safe, that's also a help. I would also keep using words and phrases that would have a calming and soothing effect or playing soothing music in the background as often as possible.

Kim: Do you have any suggestions for familys who may not know that the newly placed child has Autisim on what to look for. We help families and I have heard of familys going for years and not knowing the child was Autistic.

RUSAVED: I have had a child for 3 years and she has b diag. with austism in that last 2 months. she is none verbal and also has cp and mr she is very abusive to herself any suggestions

Anglhrtsmom: I am someone who went through that for a few years with my own child because nobody would listen! I know it's frustrating. Developmental checklists are very good tools. The Autism Society of America just went public with their new website also (it's www.autism-society.org) and they have very helpful information also. If a family is questioning the child's development, I would strongly recommend seeing a developmental pediatrician.

RUSAVED: she is being seen by the doctor now and had started the Marcus Inst Behavioral Center for additional help. I am really concerned now because she does not like any sounds at all. She goes to the Peds. Develp. Clinc and see a Specialist and also the Marcus Inst.

Laveda: Thanks, Gi Gi can give you the information you need. You are right a/b the behavior & emotional issues being grtr for foster & adopted children, but the most significant issue is that their new parents are generally unfamiliar w/the school system's Special Ed, the IEP process, and their rights under IDEA. This is where a Parent Mentor could really assist a parent. It still seems that most school systems don't fully understand autism and how to best educate children w/autism. Do the Mentors educate school staff also?

Anglhrtsmom: Wow. Can you try tape recordings of sounds so you can adjust the volume and gradually "desensitize" her?

Anglhrtsmom: You're welcome Laveda. Yes, Parent Mentors, when requested to, can educate school staff also. It may even work out better if you have someone come in from a different school system and speak or at least see if they would be open to some great (and conveniently short) articles about autism and easy to read book about teaching students with autism.

Anglhrtsmom: Just an FYI - last summer, I taught a class to the Dawson County EMS providers on hidden disabilities and how to approach and interact with someoen with a hidden disability. Educating school resource officers is also a must!

Gigi: WOW!! I hope the folks in Dawson Co. know that they have a gold mine in their parent mentor. You sure know your stuff. It's time to go, but for those of you who joined in a few min. late, check the arkives in a few days and read the whole chat. There are some good ideas that you might want to share with your schools.

Anglhrtsmom: I hope so too, since this is the last year for my contract! But seriously, anyone is welcome to contact me at any time at all. Disability advocacy and education for all students is my passion! You're welcome.

Anglhrtsmom: You are all welcome. I have enjoyed this and hope it's been of some help for you.

cindy: thank you for your information and the help you are giving to the parents in your area

A Different Kind of Roadtrip:Parenting a Child with Autism- Debra Elder

Monday, the 22nd of August 2005