Autism Parents: School Support Group Advice?

[minniebride]

Hi there,

I am an autism specialist for a large urban school district. We currently service around 150 students on the spectrum from Pre-K to high school (nuts, huh?)

Anyways, as we are getting to the end of the school year, I am starting to plan for next year. We are very proud of our program & also of our wonderful staff & students. We have a handful of very involved parents, but the majority of our parents are just not involved in their child's education. Many are very poor, not educated, single parents, either on welfare or working 3 jobs, and there are also some who are just not plain interested. I've been thinking about how to get our parents more involved, provide them with more training & education on their children. I thought about doing a support group, but I'm very weary about offering advice on specific home problems, without seeing them myself, being able to assess them before I give them advice that I feel good about. I would LOVE to find a way, though, to help educate them about the disorder itself & also on what local community resources are available to them. Anyways, I thought I would create this post to ask you-parents of children with autism-some advice. I also plan to ask the very few parents who communicate with me regularly.

Anyways, I was thinking of offering an "Autism Series" for parents throughout the school year. Inviting all of the autism parents of students with autism throughout the district maybe once every 2-3 months & we would provide child care for their kids (I KNOW several of my paraprofessionals would volunteer to stay and help).

I was thinking that I could contact some local agencies & see if they would volunteer to come and speak to the parents about their (free or insurance covered) services that are available in the community.

Question 1: Do you think these service agencies would expect us to pay them for coming?

Some other nights, I thought we might show an autism documentary.

Question 2: Can you recommend any autism documentaries that are great?

I need them to appeal to parents of children of all ages. Either a heartwarming one or even one that offers some parent training. I am thinking of showing that HBO documentary "Autism: The Musical" for one choice.

The other road block I have is many of our parents are spanish speaking. Any documentaries that yoiu know of have spanish subtitles??

Thanks in advance & I look forward to your replies!!!

 

[bookwormde]

Contact you areas Parent information center.
http://www.parentcenternetwork.org/parentcenterlisting.html
They provide free programs and materials for educating parents under an IDEA mandate most of which are translated into Spanish also.
Parent involvement is one of my specialties, so you have to know if you school want "real" parent involvement and engagement. Here is a quick checklist.

Is your school a welcoming environment for parents.
Is there adequate perceived value for parents (the more challenges parents have in their daily lives the move value you must offer)
Does your school have an effective parent support and outreach system (including using parent leaders as a primary tool).

If yes to the above I am baffled why your parents are not more involved, if not it is no surprise.
Most administrators and many teachers are "afraid" of "real" parent involvement and only want "convenient" minimal parent involvement (especial in SPED) since many parent know more about meeting may aspects of their children's needs than does the school and for those who have insecurities or ego issues that make it "scary".
If there is not already, identify your parent leaders and have them form a PTA and/or a PAC (if it is a title 1 school). The parent to parent communication and mentoring that will develop can have amazing benefits.
Oh by the way we have a 700+ student school for Autism spectrum children (not all in 1 building)
bookwormde

 

[minniebride]

Contact you areas Parent information center.
http://www.parentcenternetwork.org/parentcenterlisting.html
They provide free programs and materials for educating parents under an IDEA mandate most of which are translated into Spanish also.
Parent involvement is one of my specialties, so you have to know if you school want "real" parent involvement and engagement. Here is a quick checklist.

Is your school a welcoming environment for parents.
Is there adequate perceived value for parents (the more challenges parents have in their daily lives the move value you must offer)
Does your school have an effective parent support and outreach system (including using parent leaders as a primary tool).

If yes to the above I am baffled why your parents are not more involved, if not it is no surprise.
Most administrators and many teachers are "afraid" of "real" parent involvement and only want "convenient" minimal parent involvement (especial in SPED) since many parent know more about meeting may aspects of their children's needs than does the school and for those who have insecurities or ego issues that make it "scary".
If there is not already, identify your parent leaders and have them form a PTA and/or a PAC (if it is a title 1 school). The parent to parent communication and mentoring that will develop can have amazing benefits.
Oh by the way we have a 700+ student school for Autism spectrum children (not all in 1 building)
bookwormde

Thank you very much for that feedback. To answer those questions you posed, I would say that yes we are a welcoming environment for parents. The issue of parental involvement is district wide and not just limited to my parents of students with autism. These are also parents who are typically not very involved with their children outside of school either. It is a pretty tough inner city. Many of the parents are very young (the city where I work also has the highest teen pregnancy rate in the state), some are gang members, homeless or in transient housing, and others are just in need of parent education or guidance on how to pick themselves up and try to better themselves than the neighborhoods they are born into. Overall, many of our oarents are dealing with a whole slew of other issues in their lives, in addition to trying to manage their autistic child. Our district as a whole, although limited in resources due to poor budget, tries very hard to increase parent involvement and we do the best we can by setting up full service community schools, contracting with local agencies to offer in school therapy and social service programs, and parent training as a whole (not specific to sped). We do have a Sped PAC and I have wonderful involvement and a great relationship and communication system with the parents of autistic children who regularly attend those meetings. We frequently work together to advocate for certain autism services, materials, and we also put together fundraisers. It's the other parents I would like to reach out to.

We have 3 autism specialists in the district. I mainly cover preschool and the substantially separate classroom for grades 3-6. At every IEP, I give out my email and phone number to each parent and let them know they are welcome to contact me anytime. Anytime the child is learning a new skill or social skills topic, we send home a write up on what they are working on and how they are being taught (in english and spanish). Any new social stories get sent home as well. and anytime a behavior plan is written, I invite the parents to come in and I can go over it with them. Alot of my parents just seem so overwhelmed-not just with their child but with other issues going on as well, they tend to be resistant to coming in. Some will also express that they feel overwhelmed, due to their own education levels, that they do not understand the information. A few have also told us that they are not interested in the information because "they trust that we have it under control at school" <-- that is a small portion.

I do know what you are saying about some parents knowing more about the IEP process than teachers. I have definitely worked in communities like that. This particular community is NOT one of them. My, and my team of staff, are actually very good advocates for our students. We have to be because the majority of our parents are not educated enough to even know that they should be a part of the process, much less understand the process. It is VERY common for our parents to just not even show up for the IEP's-despite several phone call reminders, an outreach worker offering to transport them to the meeting, etc..

I would like to start off by just giving them something small and neutral, just to get these parents to put their foot in the door. I was thinking if I just started off by offering that they come and watch a movie or listen to a community service agency speak, they might become more interested. I'm not sure if I'm on the right path here though. With the population I work with, I find if you try and push these parents too much, they will shy away & I definitely do not want that to happen.

Could I ask you: What do you mean by offering "parent leaders"? I know that my Sped PAC parents would be very willing to reach out to these other parents, just not sure how to set that up without the other parents feeling overwhelmed or "suffocated"

PS: WOW 700 students with autism across your district??? Are you in a very large city? People always gawk when I tell them the numbers in the city I work in and my numbers are not even close to yours!!

 

[bookwormde]

Your PAC can apply for title 1 section 1118 funds to set up a parent outreach and mentoring program (parent involvement carve out is being raised to 2% in the next reauthorization). Parent leaders are typically those who are very active in PTA or PAC. Your PIC should be able to help and may have an active Family Leadership academy to help train the interested parents.
In areas where families struggle on a day to day basis the "perceived value" needs to extend well past the typical educational support and to bringing broader community and agency supports into the school because when greater supports are brought to bear for families in general it allows the "extra energy" to be left to help their children. It is hard to support your children when you are drowning.
Parents are almost always more receptive to other parents when it comes to outreach, since for many parents their own experience with schools and authorities have not been happy ones. This is especially true when the person dong the outreach has walked in the recipient shoes to any significant extent.
I am always looking to hear (and share) about how schools are successful in making parents welcome, so any anecdotes that you can share would be great.
I know a couple of things I look for is does the school have a parent lounge where the parents can meet and interact and how do the teachers and parents address each other when they are not in front of children. If it is collegiate like teacher talk to each other (first name non formal and relaxed) then the environment is welcoming, if it is stiff and formal (mr???, Mrs??? etc) and always focused on problems or issues then that is a sure sign that there is still a lot of work to do.
Thanks for caring so much
bookwormde

 

[minniebride]

Your PAC can apply for title 1 section 1118 funds to set up a parent outreach and mentoring program (parent involvement carve out is being raised to 2% in the next reauthorization). Parent leaders are typically those who are very active in PTA or PAC. Your PIC should be able to help and may have an active Family Leadership academy to help train the interested parents.
In areas where families struggle on a day to day basis the "perceived value" needs to extend well past the typical educational support and to bringing broader community and agency supports into the school because when greater supports are brought to bear for families in general it allows the "extra energy" to be left to help their children. It is hard to support your children when you are drowning.
Parents are almost always more receptive to other parents when it comes to outreach, since for many parents their own experience with schools and authorities have not been happy ones. This is especially true when the person dong the outreach has walked in the recipient shoes to any significant extent.
I am always looking to hear (and share) about how schools are successful in making parents welcome, so any anecdotes that you can share would be great.
I know a couple of things I look for is does the school have a parent lounge where the parents can meet and interact and how do the teachers and parents address each other when they are not in front of children. If it is collegiate like teacher talk to each other (first name non formal and relaxed) then the environment is welcoming, if it is stiff and formal (mr???, Mrs??? etc) and always focused on problems or issues then that is a sure sign that there is still a lot of work to do.
Thanks for caring so much
bookwormde

Thank you so much for your input I will be printing out your post and sharing it with my parent friends in the Spec PAC. I will definitely be back to share how this project turns out in the Fall!!

 

[SueM in MN]

I am going to move this to the disABILITIES COMMUNITY Board since it is not about WDW.

 

[kirstenb1]

There's an acquaitance of mine, who's a veteran special ed teacher. She and I were discussing parental involvement once, and she said the one way she'd always been able to get parents to show up to something was to feed them!

I hate to suggest that, but if you put together some things, and want to do a kickoff meeting, have a spaghetti dinner or something along those lines.

Our dd just finished up special ed preschool and several of her classmates come from poor families. I would guess the parents are just worn out at the end of the day. Add to that it's a challenge to parent our kids, and my heart goes out to them. I get intimidated every time I have to go to an IEP meeting, and I have a college education, and really like her teachers and therapists!

 

[NotUrsula]

Yep, feed them, and also set up child care in another room for their other children so that they can actually concentrate on the topic at hand.

You might also consider creating a DVD version of your program that can be played at home on a standard DVD player -- NOT on a computer. Most folks in the inner city don't have home computers, and if they have internet service it is usually on a phone. (Which is another point: make sure any URL's that you give them are for mobile-optimized sites.) DVD players are pretty widespread, though.

I'm sure that you already know this, but for the benefit of the peanut gallery, giving them printed reading materials may not be optimal if their own literacy is not up to speed.

Also, in terms of communication, you might want to make it a point to give out a wireless-phone address these folks can use to send you text messages. (See if your phone system can use alias addresses to get text messages to your email accounts.) I read a lot of research on the digital divide, and the gap is closing MUCH faster in terms of cell phone access than in other digital forms of communication. Remember, though, that many of these folks are still on pre-paid phones that charge a per-text fee, so make each message count.

 

[Singledad]

Yep, feed them, and also set up child care in another room for their other children so that they can actually concentrate on the topic at hand.

You might also consider creating a DVD version of your program that can be played at home on a standard DVD player -- NOT on a computer. Most folks in the inner city don't have home computers, and if they have internet service it is usually on a phone. (Which is another point: make sure any URL's that you give them are for mobile-optimized sites.) DVD players are pretty widespread, though.

I'm sure that you already know this, but for the benefit of the peanut gallery, giving them printed reading materials may not be optimal if their own literacy is not up to speed.

Also, in terms of communication, you might want to make it a point to give out a wireless-phone address these folks can use to send you text messages. (See if your phone system can use alias addresses to get text messages to your email accounts.) I read a lot of research on the digital divide, and the gap is closing MUCH faster in terms of cell phone access than in other digital forms of communication. Remember, though, that many of these folks are still on pre-paid phones that charge a per-text fee, so make each message count.

as a very low income parent I second these suggestions! Also, sometimes these type of things are planned at horrible times for parents themselves. Such as immedatly after school. (4pm) That time does NOT mesh well with both 1st and 2ed shift workers. Make sure to keep that in mind. It may be harder to arrange for the speakers and such on a different day, (like sunday evening, or wed evening.) but which is better, having a hard time setting up a time to fit one speaker, or have an easy time getting the speaker and all of three people show up?

Also, WORD OF MOUTH. Don't just rely on papers in backpacks to let parents know about this, once it is planned. many parents I know only manage to find the time to go through all that paper about once every two weeks. I am always reading a paper sent home with my DD and finding out, oh an hour ago we could have done xy and z. Wish they would verbally tell me when I pick her up from school. Or better yet CALL me on some of the really big new things (like this would be.)


also, autism documentary that I really liked was talking back to autism: a mothers courage.

 

[Forevryoung]

I know this is a few weeks old but I wanted to pass along another group that is similar but different-

http://www.4soar.org/index.html

It's a local school district that has a HUGE autism population. They are known for their services/class placement options so families with children on the spectrum move there specifically for that. It's suburban but a very diverse population.

 

[Kat77]

I wish I had some helpful advice...
I live in an affuent area and we still have problems getting parents to interact outside (and inside!) of school. It sucks!