IEP- Isolation Education Pact- The first year

Today I am cleaning out some files and came across "The Boxes". The boxes I found are the massive records and research that follows my son's education over 11 years and 2 months. Soon I will be attending an IFSP for one of my students so I was curious to look back at our first meetings.

The first surprise to us was the language of education. The use of anachronism to such an extreme degree we often thought it was a tool used to confuse parents. The crazy soup of IEP, IFSP, SLP, IDEA,LEA, ELAP, PICLD, PSE, SEE, ASL, TOD, AT, AVT, WASL,WAAS,BDIED, LAS, T/C, Bi/Bi............ the list continues and I have no need for that list much now. I spent countless hours researching and trying to network. It could have been so much easier if the world was ready for us.

What strikes me is that these documents outline the struggles we had trying to get ASL included as a primary mode of communication in his services. Each meeting had hours verbal dances and carefully worded requests. From the first meeting it was clear the world was not ready for a family that wanted a simple bi/bi education for their child. On one hand we were praised for our desire to communicate using ASL. We were a rare breath of fresh air not hanging in a cloud of denial. When we took control my son's education were labeled as crazy extremist. My son aided might be able to hear very loud environmental noise, maybe. So our choices seemed quit sane to us.

Something else that stays with me to this day is how isolating the whole process is. The IEP is totally focused on one child and yet the successful outcome of this child is dependant on critical mass, peers. We were not encouraged to work as a group of families but just the opposite. In our case before the age of three we were directed away from other families. There was a fear they may catch the bi/bi fever. The feeling I got was the educators, the experts, wanted dependence from us. By joining the Deaf world we took that away from them. We didn't need their sage advice on parenting and oral acrobatic exercises. We had a child with no delays so the only service we needed was environment. The environment we needed we couldn't provide at first. We needed support while we rushed to catch up.

So as I look through these documents I am reminded of the hard work we did just to get a shadow of the right environment. I am reminded that I always wanted to change the system for all Deaf kids and create a community to help foster the success of our kids. What I got was isolation. Even though it is documented what we did worked, it was never convincing enough to others. Some liked to just excuse us saying my son is just really smart.

So here are a few things that caught my eye as I glanced over the pages of the first year in the system,

First IFSP- hopeful and eager to get moving, age 10 months

Outcomes (related to family's concerns)

1. Parents will become proficient signers

2. Parents will meet Deaf people and attend Deaf community events and receive information from D/HH Infant Program.

3. Father we be able to attend sign class once a week. (I was working 16 hour days and taught myself to sign from a book at work)

Services

Deaf ASL teacher comes to home once a week to teach friends and family

Weekly home visits from a D/HH teacher

Respite rembursement for sign classes at local college

So by the age of 1.6 years I had asked to amend that. We went from 3 outcomes to 11. All of the outcomes were in an effort to get a Deaf D/hh teacher, a Deaf mentor and an ASL environment for the group classes we attended. Once a week there was a group class for parents and children but the teacher peppered in sign like a garnish, I got so fed up eventually I demanded an interpreter for that class until they could provide a separate class that was ASL.

Weekly home visits- the teacher was hearing and even if we tried to voice off we always fell into speaking. She was a really cool person but didn't match our needs.We needed someone Deaf. We needed ASL exposure not hand holding.

We also were shocked at all of the options and saddened that each philosophy had a tribe of follows who refused to accept the other tribes who felt equally that their way was the only way. It felt like walking down a dark street being solicited by drug dealers at every corner.

In that first year we got kicked out of the John Tray Clinic for signing, later we tried the correspondence course with no positive results. The expensive hearing aides were a bust. We had a Deaf kid who took to ASL like it was a magic elixir.

To be continued.....

Salsa and Captions

About 11 years ago....

When he was so young we decided to always have the captions on. To our surprise the captions were hit and miss. Sometimes they were so bad we wondered how someone could be so far off target. Many times in hotels we have had to switch rooms because the television was not able to provide captions. We call the front desk, they send a guy to come look and most of the time we end up moving. Around the age of five my son could set up the captions himself.

Last night.....

So the reason I am thinking about this is my son came home in a really good mood. First because they are learning to Salsa in his dance class. He showed me his new moves and I am impressed. The kid has rhythm.

The other reason is because of a movie they watched in art class. Sometimes the teachers forget to get captioning because this is his first year at this school. If I know a movie is going to be shown I send an email reminding them as was the case with art class.

Well the movie was French! That meant all of the kids had to rely on captioning, brilliant. My son acted out for me the puzzled lost expressions of the other kids. One boy admitted after he didn't understand much because the captioning was so fast. At this point my son uses a classifier to show me the slow pace of the captions. He thought it was so funny since he had no problem. He laughs and tells me he is a pro.

The Long Ride Home

10:00 am phone call from Special Ed Dept.

" Hello this is Sally Lou Who from the School District Special Education Department. Today your son has a sub interpreter and the agency is sending someone who signs English. He has 39 years of experience but his signing is not what your son is used to. He is though, really great with kids and a basketball coach. We just wanted to let you know that we tried to get an ASL interpreter and we are sorry we couldn't get one on short notice"

12:37 text from my son

" Because of terp you almost had to buy 25 happy meals from mcdonald that no one will eat!"

So long story short another lost day to a interpreter who isn't qualified. By the way my son hates the "Golden Arches" after watching "Super Size Me" years ago. The interpreter was very confused. My son is very clear with his ASL but if the person watching is not fluent there is a problem. I asked some ASL students after school if they understoond the interpreter. No. Do they understand his other interpreters? Yes.

One thing I love about having a Deaf son is the walk or ride home from school. I can't drive and have a serious conversation from the corner of my eye. I also am as graceful as a pregnant elephant so walking and watching him sign in great detail is risky.

Today we sat in the car and talked and laughed about the weird things the interpreter said and some really cool things happening in his classes. We are forced to really engage when we talk. I can't multitask by driving and half listening to him while I plan dinner in my head. I enjoy this quality time. He knows I am really paying attention and present. I believe one reason we are so close is because of the nature of ASL.

Today our five block commute took 35 minutes. Priceless

For Mature Audiences Only

Tonight I had the unique experience of interpreting a stand up comedy show for my twelve year old Deaf son. Some Senior kids at his school do a comedy show once a month at a local hang out. My son wanted to go and he asked me to come and interpret. Of course I would do that, sounds like fun.

When we arrived it was pretty crowded and luckily there was one table up front open for us. This makes it easy for him to see the comic and me without me having to stand on stage. I just sat facing him right in front of the stage.

So the show begins and the kids are really funny. I find myself wanting my son to get every joke even though they chose music parody for the first set. Other bits had pop culture references and word play. I really had my work cut out for me. The thing is if I just interpret the content directly the humour can hidden. I need to also get the inflection of their voices to really deliver the joke. This is a lot of work to do it right but it is worth it to see him cracking up. It involves me , a 43 year old mama acting like a 18 year old kid. Yep, I have to do this because otherwise the joke is lost.

Well the awkward part was when the jokes had sexual or teenage reference.There was nothing too overt but defiantly not the kind of things I want my son to witness me saying. I was sitting in front of my son signing about humping, balls and why you never invite your mom as a friend on Facebook (we are friends). My thought is the other kids have the luxury of just sitting there and laughing, I will give my kid the same thing.

So on some level we cross a line. I pretend to be another person and not see his sweet eyes and gentle soul. He wants to go and I find the energy to let go of being mom for a second because well crap, he wants to go to the show where his friends are making the world laugh.

Pity

Last week my son and daughter wanted to go to Target with me to do a little shopping. It was a lazy Sunday and we were not in any hurry. We were chatting while we wandered around and peopled stared as we walked by. Usually this is a glance in our eye line then a full on stare after we pass. Its a Deaf thing, people are curious. We are used to it and don't often notice.

Sometimes ASL students will go to great lengths to get our attention. Shy little waves then awkward attempts to sign anything to show their desire to communicate with a real deaf person. My son is polite but not too engaging. He values the brief times where he has privacy.

Other times mothers will ask if he is deaf. The next questions are about reading lips and level of hearing lose. They often can't conceal their pity and relief it is not them. I always feel a little sorry for them. Sometimes they ask if he goes to a special school. I tell them he goes to the Art charter school and they have a look of shock wash over them. Often they tell me their child didn't get in.

On this recent trip we are in the cracker aisle a rather benign place to be and a mom with three kids shares it with us. She looks to be the perfect soccer mom. She has great hair and the requisite pressed jeans and knit shirt. Three kids follow her like salmon so kinetic and silent. I am wearing yoga pants and a weird shirt tossed on in hast. She sees me signing and offers a polite smile. I smile back. We have nothing physically in common so I wonder does she nod and smile to everyone she meets? My kids are joking about how it would be a good thing if I bought Oreos because they are on sale. My son tries the" boost the economy angle". I laugh and move on. I suddenly get an auditory assault from the next aisle. Soccer mom has gone rabid on her kids, "DON'T TOUCH THAT! I MEAN IT! DON'T! STOP TOUCHING! I AM GOING TO PUT THE CANDY BACK! IF IT IS NOT YOURS DON'T TOUCH! I MEAN IT! THE CANDY WILL GO BACK!......" I hear the first few screaming reproaches an my ears recoil and hide. I stop listening and just hear the drone of the assault. I pity this woman for having to live like that. Doesn't she know her kids no longer listen to her soundtrack of nagging? STOP- how can I judge her and why do I need to? Maybe she just found out she was loosing her house or her mother died. Maybe she is just doing her best and today was too stessful. I know nothing about her but because she does something that in my opinion is weak and know I have the right to pity? Maybe I am showing my weakness.

I move my kids on hoping her screeching voice won't alter my good mood or scare my hearing daughter. Too late she is a bit freaked out and asked about it. I mumble a lame excuse and redirect her. As we are checking out the craft aisle I hear her again but in loud trying to be hushed tones, " Stop hitting your brother! Don't do that! OK I am going to take away your DS if you can't control yourself." I look over and realize it is another family. They are spilling all over the main aisle and the kids are wrestling and jumping in front of her cart. Again I am so happy that is not my family. STOP- I have had moments like this. Tired needing to run errands and my kids decide to take advantage of my stress. I offer her a smile, one that says hang in there.

My son asked to go look at the book section while I look at some household stuff. Fine I tell him. Can his sister go he asks? Yes I tell him but he needs to watch her and never separate. Fine he tells me and they walk off he puts his arm around her shoulder and I am so happy we are family. When I go find them my daughter is on the floor looking at a book my son suggested and he is standing guard watching over her.

As we leave I tell the kids we can get a drink. They are so excited because that is a treat. As we wait in line a mom barks at her son as he walks up, " I told you to stand with your dad!

Now go away!!"

Wow, stress, glad it is not me.

I am thinking today about pity. Often I find people pity my son for being deaf even though they do not know him. Over the last couple of days I have seen some pretty funny examples of this and what is more funny I am thinking the same thing about them finding myself shocked at their perspective.

I see it like we are all looking at the same tree but from different sides so the perception of the tree is different to all of us. I may see they moss growing on my side and the branches may be growing in different ways but it is still the same tree you are looking at. I am now thinking about how we all see what is the desired outcome in life. What our tree needs to be in order to be "right".

I don't understand why anyone would pity my son or me but it happens. Gosh, it must be hard they tell me, or wow, you do such a great job they say with a look of uncomfortable, polite, fear.

They don't know him yet.

They meet him and then, well the table shifts. He is happy and at peace with his life. Sure he is also grumpy and a tween but his deafness does not define him. One of his dance teachers told me yeasterday she watches the way he moves outside of class. He is comfortable with his body and self so it is easy for him to navigate the world and engage. She tells me it is interesting to see this in a twelve year old boy.

Yesterday my daughter met a new neighbor girl. She is really sweet and wants to play. Her brother, she tells me, is my son's age. He gets bullied at his new school. I feel sorry for him. I hate when kids get bullied. He comes over after awhile and wants to meet my son. Haddy is busy working on some editing and tells me maybe later. I go outside and start to teach this boy some signs. I hand him a "100 Signs For Parents " booklet. He picks it up on his own so fast. This boy is awkward and a bit well , slow for all intents and purposes but he is really good at reading ASL gloss. He starts to show me many signs he is learning. I tell him how sharp he is and I see his confidence grow. Soon I feel so warmly for this awkward kid I go tell Haddy he should really come out and try and be friendly.

" Mom, serious? I am right in the middle of this...(he shows me his new project)"

"Please, this poor kid has no friends and is out there trying to learn to sign. I feel sorry for him he is not really bright and I think we should be nice"

"Hold on I need to do a few things I will be out soon."

I walk outside and this kid shows me more signs he mastered. " I like birds and food"

I tell him maybe he could learn signs for things he really likes? He names off some video games and cars. I show him the signs. He tells me he really likes birds and food. Then he says,

"I really feel sorry for your son because he can't hear"

One Hearing, One Deaf

I have met many parents who are concerned about having a deaf child with hearing siblings. I have met families with deaf children and their hearing children don't sign much even though their deaf child has limited if any oral skills. I notice the hearing siblings acting uncomfortable when they attend functions at the deaf school. This always makes me sad. My hearing daughter enjoys her close relationship with her Deaf brother. She loves to hang out with her deaf friends. Over the years she has blended in with the children at the deaf school and enjoyed all of the activities she was included in. She also has her own activities in the hearing world. She brings her brother in by interpreting naturally. I know our family is not typical but really who is? The one thing that strikes me is that we are happy to be bilingual, it is a side note in our otherwise exciting lives.

I used to volunteer teaching art, theater and cooking to the elementary kids at the deaf school. In theory she shouldn't have been allowed to join but she had come with me since she was born and it was politely ignored. Later we wanted my son's best friend an coda to join the classes after school but we were told no. I went to the superintendent to plead my case that it was important for our deaf kids to socialize with hearing kids and really valuable for the hearing siblings to have that experience. A new policy went into effect saying that siblings and codas could join if a parent accompanied them.

What really works for us is helping her to be bilingual. We have signed with her since birth so it is natural for her. Also my son's deafness takes very little extra attention. We don't have to focus on him because he is deaf. I do advocate for him with his education and volunteer at his school but I do the same thing for her. For the last couple of months she has had to be patient with his intense rehearsal and performance schedule but before that he had to sit through her ballet class and school fundraisers. None of that was because he is deaf. My son is five years older and popular and she loves the attention she gets because of that. His older friends are very sweet to her. The night she went to his play they pulled her out on stage during a scene and taught her to cha cha during intermission.

They also do argue. It is really funny how this works. They don't shout like hearing kids but very much like deaf kids. I will be in another part of the house and it goes from silence to loud is seconds. She is signing really big and voicing short sounds that are shadows of words. He shouts sharp short screams and I run to intervene. What is interesting is when I do she continues to sign her explanation of his crime with big shouting signs.

Sometimes it is a bit awkward when he has to go to her functions. I often interpret and other times he tells me to relax and don't worry about it. One time we went to a fair at her school and were sitting voice off eating at a table. We were laughing about something and all of the sudden this deaf kid comes over and just stood there staring. My son tells me he knows him from school and he just starting a half day at the deaf school. He recently lost his hearing and was learning ASL. His parents don't sign. He wanted to join us.

I have to go. My darling children are screaming in the next room. I went in to see what the ruckus is about and my son was teasing my daughter. He was pretending to be hurt. She realized she has been duped again and started a pillow fight. Nothing good will come of this. I will now go moderate as they scream and laugh their way into a frenzy. I will have a hard time getting my little girl to sleep tonight.