Feeling a bit hypocrital

I am feeling a bit hypocritical these days. It is a really long story and truthfully I am not comfortable providing much detail because a couple of my visitors will know who I am talking about. I posted about this friend a few months ago when my frustration level reached maximum. I ended up pulling the post afterward because I wasn't comfortable sharing what I did when some readers knew the people involved.

The quick and easy background to this story is that this is a fellow special needs mom who is having a very difficult time. We've known each other for about 2 years since our oldest children were in the same early intervention classes. Both of her children have IEPs. Both are still pretty much non-verbal and in diapers. They are 5 and 4. Mom graduated high school but was in special education. She means well but has trouble seeing the big picture and following through on things. She asks me lots of questions about what we do for JP and seems interested in trying them but she just can't pull it together. I've loaned her books. I've photocopied pages. I have helped her make sticker charts and visual schedules. I've answered the same questions over and over again. Finally out of desperation (and frustration) I decided that I didn't have the energy to keep beating my head against the wall. I've referred her to local resources to try and get other hands involved. But now some of those local resources are sending her back to me.

Recently she has been fighting the school on an accomodation they are employing for her oldest. I think she has been "fighting" this all year. In my opinion, it is a necessary accomodation for the child. But Mom refuses to accept the talking device because she feels that it has decreased her childs verbalizations. Mom learned to talk without the device and is sure her daughter will also. She thinks the device will cause her daughter to not learn to speak for herself.

A few months ago I started an Autism Support group for families in our school district. We have about 10 families. We are including her even though her child does not have an actual autism diagnosis. Her children are very similar and the family is very much in need of a support network. She brought up the issue to the group and we tried to give them the moral support they needed. Ultimately we encouraged them to find an advocate that can listen to the facts and make an unbiased decision based on what is best for her child. Also, we strongly encouraged that she schedule the meetings with the school at times when the husband and her mom(grandma) could come with her.

They had that next meeting and the school explained why the child needed the communication device. Dad and Grandma agreed with the school. They whole heartedly agreed that it was in the child's best interest AND that they needed to get one for the home. Mom called me upset because they had turned on her. I then had to try to gently explain that if her daughter was actually forming sentences on this device than it was a GREAT thing! And she most certainly should have it in her home. For some odd reason my saying it seemed to bear more weight than her husband or mother.

For awhile I was losing sleep over the issues of this other family. I was stressing over how to convince Mom that she needed assistance and frustrated because there is no one to provide that assistance. For a while I just rolled up my sleeves and started trying to help her learn how to help the kids. I gave her a handout on discrete trials and physically showed her how to do them. We listed some goals to work on. I gave her a sticker chart on self dressing skills as well as a stack of stickers.

Unfortunately after about 9 months of this I had to pull back. I felt guilty but I had to do it for my sanity. I have my own children who need my energies. I feel guilty about this but what else can I say. My children have to be my priority. I've been trying to fade back. I've been trying to get her in contact with advocacy organizations.

(So much for my short synopsis of the story.)

Anyway, here is the issue. She has talked to a few of the organizations. One in particular is a Parent Adovcacy organization. They talk with you but are not able to represent you in your meetings with the school. She asked. You want to know what they told her? "Why don't you ask your friend, MWAM, to attend your IEP/Placement meeting with you." What the hell! I guess that plan backfired!

So we met at the park a couple weeks ago for a playdate. She proceeded to pull out her child's verification paperwork and IEP. She handed them to me and explained that the advocacy people said that I should attend her Kindergarten placement meeting with her. "Here you go", she said. "The meeting is next Tuesday."

This is where I feel hypocritical. She sees that I have gotten my son included in a general ed Kindergarten. The school and she are not agreeing on the proper placement for her oldest. They recommend a special ed room. Mom wants mainstream. Mom wants what JP is getting and does not see that JP's placement is different because JP's needs and skills are different. In fact, this is a hard pill for me to swallow but she feels that since JP has autism and her daughter does not then her daughter should be better off. It's not right for JP to get a "better" placement. And no those are not my words. Those were hers.

I stammered and tried to avoid the discussion about attending her meeting. But she brought it up 3 times and wouldn't let me off the hook. I told her I'd have to talk to my husband to see if he could take time off to watch T. I told her I didn't think it would be likely since he was so busy at work. I felt like an ass. She needs someone she can trust. She seems to trust me. But I CANNOT take on responsibility for her children.

Also the biggest problem I have is that I agree with the school on this placement decision. I worry that if I sided with them at the meeting that she would feel it a public betrayal. I also selfishly worry about harming my relationship with the school. I don't want them to think I am the one pushing her to put her child in an inclusion setting. I know inclusion is not the right fit for everyone. (On some level I do believe in inclusion for all, however her child has severe anxiety issues and can't even handle interacting one on one much of the time. I cannot imagine what will happen in a room of 25 Kindergarteners! In my opinion, a regular education classroom is not the right place for this child right now.)

My fear is that she will use my name and the schools will think I am the one encouraging her resistance. Part of me considered going to the meeting just so I could make it clear to the administrators that I am not advocating inclusion for her child. As I mentioned before the Special Ed Coordinator is my biggest obstacle and I don't want to alienate her. I selfishly worry that they will blackball me as a trouble maker. I imagine them saying, "See what happens when you give one person inclusion...everyone expects it." Then they will become more resistant to our requests.

I did eventually tell her that I could not attend her meeting. I gave her another phone number for a state advocacy organization in a nearby city. And I did tell her that I wasn't so sure that inclusion was the right decision for her child. I know that she didn't like what I said. Mostly I explained that although JP is being mainstreamed I am having to partner with the school to get things done. I have worked hard building this relationship with the school. I explained that she has hurt her cause by her refusal to employ the communication device at home. (She now has the device but isn't using it). I encouraged her to develop a plan with the school with the stated goal of having her child included in 1st grade. If she works with them toward that goal then it just might happen.

So here lies my moral and ethical dilemma. How can I say I am about advocating for all children when I feel like I am turning my back on this family. Yes, I am giving them advice. Lots of it. But where am I when they need someone to step up. In my heart, I know I have done everything I can. I have tried to "step up" so many times that I have bruises from falling down.

A few months ago I decided that for my sanity, I had to draw the line. I started being less available. Then she upped the ante with the request to help at the placement meeting. At times this makes me feel so hypocritical. How can I justify doing all these advocacy attempts to help the families that just need that little boost to help themselves and then turn my back on the family that truly needs someone to hold their hand? In my head I know it goes deeper than holding their hand and I am not qualified or able to walk them through the special needs journey. It is my heart that I am having trouble convincing.


*******
I sat down this morning to post this because I am trying to build up my energy to call her back. She called last night when I was out. The meeting was yesterday. I am anxious to find out how it went but still dreading making this call.