In training: A lesson learned from a train ride

Tags

autism, independence, travel-training

Guilt. And pride.  That is how I am feeling now.  But yesterday it was panic, fear, and guilt, fueled by a few  imaginary voices, like:  “I told you so”.

In September my daughter started to take the train from the town where she goes to school, to a town a short ride away.  I thought this was a perfect opportunity for independence and safe “travel training”.  She loved it and was committed to our transitions check-in routine:  She programed her iPhone with alarms for each call to me:  leaving the library, arriving at the train station, on the train, and arriving at the therapist office.  Things worked like clockwork every week.  Until the other day.

I got a call saying she was on the train.  “Isn’t that early?” I asked.  “I guess it came early today.”  I am not familiar with MetroNorth being early, so I don’t know why I did not leap into action (hence guilt).  She called me again on my cell but I did not pick up.  She then called the house phone and I did pick up  (yay for persistence!)

“I’m on the wrong train.  Help.  What do I do?”  She said she realized this when “a voice I heard” said this is the express train to Grand Central, next stop is ….  I instructed her to get off in at the next stop and wait for me.  (She took the initiate to call her therapist to say she would be late!! Yay again.)

But I had a mind melt – I miscalculated how much time I needed to get to the train station to meet her so I was not rushing.  Once in the car it dawned on me of my huge mistake.  I tried to get to the station as fast as possible and called her cell at a stop light..  I didn’t have my blue tooth on.  A man picked up her phone. PANIC.  “This is the conductor, I just found this phone on the seat.  I am heading to Grand Central, I can leave it there.”  Light changed.  Had to hang up.  Panicking about how to reach her with no cell phone. Police?  MetroNorth?  Should I pull over or just keep driving?

Getting to the train station is one thing, getting into the train station is another.  The traffic pattern is so confusing and I missed the entrance, had to circle around, finally got to the front but where to put the car?  I circled the taxi area and they all started to honk at me.  I opened the window and screamed HEEEELLLLLP.  No one noticed.  Finally a police car.  I said “I need help. I have an autistic daughter who I think is lost here.”   “Don’t panic, park in this no-parking spot.  She must be capable if she can take the train. What is she wearing.”

I raced into the station, started screaming her name, not response.  Finally go to the ticket waiting area in a glassed in section between the tracks.  There I heard “Mom?”  Race to embrace.  Safe.  She was hot, and said she had cried  (who wouldn’t?).

She was next to the ticketing window (yes they still have one in the larger stations, thank God!).  And the women behind the glass called me over.  She said she tried to reach me.  I missed her call as I was so busy trying to find the police phone number and misdialing while driving.

But thanks to an  “Arthur” episode, Izzie knew to stay right where she was and wait for me. And Marie had already reached the conductor about Izzie’s phone.  We made arrangements to meet the conductor on his return trip, on the platform as he passed by an hour later.

Leaving the station we saw the policeman and thanked him.  Then called the therapist to let her know all’s well but we won’t make it.  Izzie deserved a big treat so we went to her favorite restaurant, and got ice cream and cake – before dinner, gasp!

I told her she did everything right  given the situation.  She called me.  She called the therapist,  She got off the train.  She went to the ticket counter for help.  She stayed in one place.

Back at home I called the police and asked about “registration” for her.  We all put in the local police phone number into our cell phones, and I added the MetroNorth number too.

She made a comment about not wanting to take the train again.  So, since she is taking a journalism class, I suggested she write about her experience.  To get her started I interviewed her and made an outline of each step that happened.  She needs to process this and see how amazing and resourceful she was.  She needs to get her confidence back. This was a huge lesson for both of us.  I learned how capable she is and I hope she learned that too.  As Dory said to Marlin, Nemo would not have any experiences in life if Marlin tried to protect him from life.

There will always be memories of scarey things:  I still remember at age 5 being stuck in between the two doors in a small hall entrance to an apartment building – I could not open either the door to the outside or the locked door to the lobby.  I remember at 12 leaving my purse on the local bus and my father driving me trying to chase down the bus through the city of Newton. But both were relatively safe settings.

Even though this “worked out” ,of course in my head will always be:  what if it didn’t work out?  What if someone took her?  It did happen to a friend of hers.  Can I still let her take the train?  On one hand, when people start talking to her, they will realize that ‘something is up’ with her and perhaps be more helpful, or perhaps take advantage of her.  How will I know?

Please share your learning experiences in independence.

I wanted to acknowledge the help of the Metro North staff so I tweeted last night:

marjorie_m: Big THANKS to Maria at [location] ticket and conductor John @MetroNorthTweet for helping my daughter with #autism today #hero 10:08pm, Apr 09 from HootSuite

And this morning they responded:
MetroNorthTweet: @marjorie_m Thank you for sharing – we will be sure to pass this along! 5:49am, Apr 10 from Web

Meet me on the dance floor

Just the other day I was at a meeting and I introduced myself to someone who then said “Oh, I know you, I get great information from you!”

I have always been a networker, long before the internet and email, and way before social media made it popular and easy. I like connecting people, and I like sharing information that I think will be valuable to someone else.  I don’t ask for anything in return.  (although flowers and chocolates are always appreciated).

Now I am asking you for something.    I want to meet you all in person.  I know I have never met some of you who are receive emails, follow me on Facebook or Twitter or read my blog, and who have received relevant information from me about autism, other disabilities and special needs, special education, legal and financial issues, government programs and funding, recreation, services and community.   (And I do provide an editorial service – I don’t send you everything that shows up in my email in box.)

This is the ask:  we need your help to raise funds for autism research.  and I want you to participate – in person or virtually.

One way to fund raise that is to have a lavish dinner and ask people to spend $500 per person.  Another way is to have a low cost event where most of the money goes to the cause, many people can participate, and at the same time have a social experience. This approach requires lots of participation from a large community.  Well guess what, Allison Singer, president of Autism Science Foundation, has arranged a fabulous event for our community – it is a Zumbia party.  It won’t cost you a lot to participate, you get to socialize, and best, you get to exercise more than your mouth!

YOU are part of our community.  Even if Autism is not your specific “special need” you are still part of our network.  We need you.  And I need to meet you.

So join us for Fun. Fitness. Fundraising. Zumba Mania for autism research
Saturday, April 6  12:30 pm to 3 pm
An event open to all:  any ability, shape, size, experience, age, gender.  It’s all for a good cause.

and you get a FREE water bottle or a tee shirt when you show up!

Register here for Autism Science Foundation ZUMBA-Mania:  http://asfzumbamania.eventbrite.com/#

Dance2BFit
656 Van Ranst Place
Mamaroneck, NY  (Westchester County)

Learn more about Zumba at Dance2BEFit
Easy to get to from Rt 95, the Merritt Parkway, the Hutchinson Parkway
OR  you can take the train from Grand Central!

come in comfortable clothes for dancing.

More on Facebook here:  http://www.facebook.com/events/129486370561087/

Share with your network on Facebook and Twitter: (copy and paste)

Fun, fitness, fundraising. Join #Zumba Mania on April 6 in Mamaroneck NY to support #autism research http://ow.ly/i0cNX

PS, even if you can’t come,
please make a donation
to support our cause.  Thanks!
http://asfzumbamania.eventbrite.com/#

 

Letting go

Letting go.

via Letting go.

Letting go

Tags

IEP, Individualized Education Program, Regents Examinations

On Wednesday, February 6^th,  2013, my daughter declared, “this is best day of my life.” 

That followed a program (IEP) review meeting that she attended, along with our home school district CSE chairperson and district school psychologist, and her attending school’s two program directors (who are special education teachers), her teaching assistant, her school psychologist, her guidance counselor, and her parents.

 At that meeting we made a life changing decision to remove “high school diploma” from her IEP in the middle of her 10^th grade year.  She was delighted, I was depressed.  It’s not like I was surprised by the recommendation from her program director.  He had been proposing this since last spring.  And it seems everyone else on the CSE (Committee on Special Education) agreed with this change.  It means that my daughter will no longer be held to New York State academic requirements.

 They felt that the academic challenge was too great for her, that given how she had performed on class work and midterms, that passing the Regents exams was a big stretch.   They reasoned that without having to work towards passing the Regents exams they could be freed up to teach only the more relevant content, and reduce the stress for her.

 I got it.  But, I felt like I failed.  Since she was 5 years old I had been searching for an educational approach that would be stimulating, relevant, meaningful, useful, and appropriate, leveraging her strengths while building up her weak areas – all the while earning the diploma that I thought she deserved.  In that search she had been in 5 different academic programs.

Until recently, a high school diploma did not seem completely out of reach for Isabelle.  New York State had offered an alternate set of exams called the Regents Competency Tests (RCTs) for students who did not pass the Regents exams.  I had been hearing about this for years at SEPTA meetings and parents of teens several years ahead of Isabelle had recommended this as the “solution” for a diploma.  The CSE had also endorsed this approach.

On the other hand, parents of students who seemed to perform at my daughter’s level wondered why I was so obsessed about a high school diploma anyhow.  They figured that their child would not be attending college, that they would not be in the competitive job market, and that their child would qualify for government support, that a diploma would be a useless document, and that a curriculum that focused on earning a diploma would be a waste of time.

My philosophy in raising a child with a disability has been to aim high, and to insist that teachers and administrators set high expectations too.  As the quote goes,  ‘Shoot for the moon. Even if you miss it you will land among the stars.’ (Les Brown)

But low and behold, the Regents eliminated the RCTs as an option for students entering 9^th grade in September 2011.  When did I learn about this?  June 2011, a month after our CSE meeting that planned for her freshman year.   There went our strategy that we had in place for 10 years.  (Apparently the Board of Regents had been planning to eliminate the RCTs  for years but no one ever told me.)

So when Isabelle entered 9^th grade in September 2011, she was enrolled in Regents prep classes, but with no RCT as her safety net.

The heads of special education in Westchester County’s public school districts did not support this change and were very concerned about students like my daughter that were the “gray area”.  The regional association of special education directors held a meeting and invited Becky Cort, then head of NY State Special Education and a Regent to a meeting.  A panel of professionals spoke about the negative implications and consequences of the decision to eliminate the RCTs.  I then had an opportunity to speak from the audience and shared my concerns as a parent. There were lots of angry and frustrated professionals in that room.  But the State Education representatives were not moved.

Last August I wrote a blog post about my frustration with a proposal by the Regents to replace the RCT with a “safety net” for students with IEPs to earn a NY State with allowance for lower scores on the Regents exams, the same exams that all high school students must take to earn a Regents diploma in New York State.  

But despite my lack of belief and support for this new plan (oh, by the way, I did submit a comment to the Regents but never got a response) I continued to push my daughter  in her modified academics program.  “Modified” means that the content for the subject is modified from the general education curriculum and taught by a special education teacher  in a way to enable students with learning disabilities to absorb the core content enough to be able to pass the Regents test for that subject.  If this sounds to you like teaching to the test, you are right.  The teachers focus on teaching students how to answer questions that would be asked on the Regents exam, and have no time to enable the students to be creative and explore special areas of interest.  (For example, my daughter has never been assigned projects to do at home or group assignments that required weekend collaboration).

But I thought or hoped that being in a classroom that focused on the core curriculum would be beneficial towards her intellectual and social development.  I thought of the brain as a muscle that needed to be exercised and that not pushing to the maximum would mean atrophy.  I also thought that a high school diploma meant she would have a better chance of living an independent life as an adult.  (It’s true that I ignored those parents who told me about students who earned a diploma but could not function in any workplace).

I was disappointed that her teachers could not use teaching methods that had proven effective (because I was told they had to drill for the test and teach test taking techniques).  As I spent time with my daughter on her homework, I started to realize how meaningless and uninspiring her school work was to her. 

For some students who had significant disabilities, and were never on a diploma track (ie, not in classes that taught core curriculum) but were working towards achieving their individual education plan (IEP) goals, they would receive the IEP diploma. In 2012 there was a proposal to replace the IEP “diploma” (which was never really a diploma but just a certificate that indicated a student met his IEP goals).  The Regents renamed this certificate the Skills and Achievement Commencement Credential for Students with Severe Disabilities.  It is intended for students who are eligible to take the New York State Alternate Assessment (NYSAA) which can be up to 1% of students in a school district.  Here is more information about the certificate 

I had been aware of that plan.  (And that was not the plan for my daughter.) But to my surprise, I just learned about an additional option – apparently announced in September. 

Here is what I found:

   ‘In September 2012, the Board of Regents directed staff to develop a commencement credential documenting attainment of the Career Development and Occupational Studies (CDOS) learning standards for other students with disabilities, including students with disabilities who are unable to earn a regular diploma.  The Regents supported development of proposed regulations in accordance with the following guiding principles:

• In addition to academic preparation, students need to be able to demonstrate knowledge and skills relating to career development, integrated learning and universal foundation skills essential for success in the workplace (CDOS Learning Standards).
• Students need to be actively engaged in career planning and preparation and their participation in career awareness, exploration and preparation activities should be valued, encouraged and recognized.
• Students should participate in meaningful career development opportunities that are developmentally and individually appropriate, in consideration of the students’ strengths, preferences and interests and that provide real world work experiences.

The proposed regulations are expected to strengthen existing transition planning and implementation for students with disabilities because they emphasize student involvement in career planning; require districts to offer opportunities for students to engage in work-based learning activities and instruction toward the CDOS Learning Standards in order to earn this credential; and provides a student with documentation on his/her readiness for entry-level employment (employability profile).

The Certificate would not be considered a regular high school diploma in accordance with State standards or for federal accountability purposes and a student with a disability who exited school with this Certificate continues to be eligible for a free appropriate public education until the end of the school year in which the student turns age 21 or until the receipt of a regular high school diploma, whichever shall occur first.  (more here on the special education amendment)

 So this is now the next option for Isabelle:  a certificate but not a diploma.

For Isabelle, this means less homework, less demands at school, and no diploma.  For me this means, yet again, letting go of a goal and a dream, something most parents take for granted.

 If anyone wants to hear about this new certificate, come to the meeting on March 13, 2013 where  Pleasantville School District’s head of special education, Dr. Carolyn McGuffog will discuss the new NYS HS Diploma Credential.  7pm at the Pleasantville High School Library/Media Center

 

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,700 times in 2012. If it were a Dreamliner, it would take about 7 trips to carry that many people.

Click here to see the complete report.

Inclusion is an illusion

Tags

girls, high school, inclusion, special needs

A high school dance is coming up next week.  While Isabelle does not like loud environments, she does like to dance.  And given this is an activity she can “fit in” socially,  I thought it would be something I would encourage her to do.  She used to like the middle school dances.  Yes, she wanted to leave before it ended but she seemed to enjoy herself for the time she participated.

But knowing that this dance would be a challenge  - she had not gone to one in the high school yet – I wanted to make sure she had companions (I can’t actually bring myself to call them friends) to accompany her.  So I contacted the teacher advisor for the school’s ECHO club, the social service club to see if she would help arrange a match.

To my surprise, I was told:

“I think this is something that needs to be discussed between you and the ISP staff.  ECHO members typically would not be placed with a peer for an activity like this – in middle school it was a different situation because of the age differential, and since the HS girls were not attendees at that activity.”

My first thought was, why shouldn’t students be asked to help a peer?  My second thought was, why does supporting a special needs student have to go through the special education teaching and program staff?

Showers are where I get some ideas sorted out, and many of you know I like analogies.  I thought of this one:

Let’s say you had a grandma that lives in a nursing home or has a full time aid to help her with daily living such as eating and hygiene.  Now it is Thanksgiving and you want grandma to come – because we all need a grandma at the table.  And if there is a family photo she would need to be in it, or there would have to be some explaining.  But you say the aid needs to come too, because you don’t want to be responsible for getting grandma to the bathroom, or wiping food off her face, or seeing her frail hands shake, or cleaning up after she drops the glass, or feeling uncomfortable because she can’t follow the conversation, or annoyed that you have to remind her of who her nephew is.  The aid is there so the family members don’t have to be burdened.  So grandma as member of the family is just an illusion, she is really a member of the nursing home on visit to make the family think they are including her.  The holiday photo is taken and shared on Facebook.  Everyone feels proud that grandma came.  And the photo proves that they love grandma.

Well that is what I am finally seeing happens with “inclusion” in school.  And I have been fooled all these years.  (I can hear you all saying “I told you so.”)

Inclusion seems to mean the teaching assistant chaperones the student with a disability so that she can sit on the bench with the other kids with disabilities at the homecoming bonfire.  It does not mean asking the actual members of the community to put in any effort, to take any responsibility, or to make any commitment to enabling their peers to participate.  The responsibility is given to the TA.  But the TA is not a member of the student community.  Then a picture is taken to prove that the student was there and thus “included”.

Until peers put in some effort to help their fellow classmates, inclusion is just an illusion.  Until adults teach kids to make the effort, this illusion will perpetuate.

PS  I won’t let her go if it means a TA is going to chaperone her.  How humiliating for a 16 year old girl!

PPS – example of inclusion – set up by adults but implemented by kids:  wrestling boys

Dear NY State Regents, you got an F on your test

Today is the last day for public comment on the New York State Department of Education proposed amendment to regulations regarding high school diploma criteria for students with IEPs.  A copy of the proposed amendment is here.
http://www.regents.nysed.gov/meetings/2012Meetings/June2012/612p12d4.pdf.

In a nutshell – the proposal is to allow students to score as low as 45 on “any” Regents test – except math and English – but must compensate that with a 65 or higher on any other regents exam.

I filled out the form and here is my response:

Reasons/Recommendations:

I am disappointed in the recommendation.  I don’t believe it addresses the problem created when the RCT was eliminated – and it will not enable more  students with disabilities to earn a high school diploma.  The Regents exit exam approach seems to be based on the assumption that a high school diploma is the entry ticket to college; rather than a high school diploma is an entry ticket to independent life – where one option is college.

The question is – what subset of students with disabilities is this proposal intended to support?  It seems it is designed to help those students who have challenges remembering the facts from history or science.  (the only Regents tests that the revised safety net applies to).  It does assume that the student has average skills in another area to compensate for his below average skills in science or social studies.  This is so unlikely a scenario that this proposal only applies to super subset of students with IEPs.   (Maybe you are thinking of the stereotypical student with Aspergers who is a math wiz earns 95 on the math regents exam to compensate for his 45 on the social studies exam.) 

This proposal does NOT address the needs of students with disabilities who in the past were allowed to take the RCT exam.    I thought the point of the proposal was to address the loss of that alternative exam.      And it does not address the challenges for students with disabilities in conceptual content like math.

This is like asking a person with one hand to play golf but you’ll still let them win with a 55% (or in golf it would be 155%).  Rather, let the one handed person play tennis and win with 85% .  Think of math (algebra) as the equivalent challenge to a student with autism and other developmental disabilities as golf is to a one handed person. 

What is needed is a different exam, not accepting a lower score.    As you see more students with autism being included in mainstream you will notice that in most cases math is the biggest challenge, It does not matter how good the teacher is, algebra is not something that most autistic brains grasp.  (Ask Temple Grandin)  It is like asking a deaf person to appreciate music. 

I was expecting you to come up with a math replacement of the RCT that will assess functional math skills.  Ideally you would approve a curriculum of business and consumer math, and create an exam for that.  That not only would be completely practical content,  but it would also enable them to have a diploma – which leads to a job and a better chance for an independent life.

That is what we want for our children with disabilities – an independent life. 

 PS – without getting a high school diploma many students will stay in high school, or in education programs funded by school districts until they are 21. (Think more cost for school districts).

 

Let’s mix it up a little

When is it a good decision to make a change to something that is “good”?    How do you provide challenging opportunities for your child without overwhelming them and causing a setback?  Is it ok to push your kid even if she prefers not to be?

It’s likely that most parents ask themselves these questions as they raise their children.  Have you??  But, typically, by the time most kids  turn 16 they able to participate in these decisions that impact her life.

My 16 year old is not typical.  She has difficulty with language, with social interactions, and with change.   So I feel compelled to intervene on all three areas of challenge.  I know she thinks (and says) I always push her.  But how could I not?  I know she has potential beyond what she would allow herself to achieve.  And beyond what any teacher, school administrator, camp director, or counselor would assume.  And since my vision for her is to be able to live an independent life, I feel I can’t go easy and always let her lead the pace of challenge.  (Oh right, what about her own vision for her life?   I am certain she too wants to become an independent adult.  In fact, this May she told me that “now that I am 16, I can make my own decisions.”)

Isabelle had gone to one summer overnight camp for 4 happy summers (age 12-15)  She had known 6 of the campers even before she started her first summer.  And then she expended her friendships over the years.  During the school year she joined the monthly camper get togethers in the New York City area.- this was the focus of her social life.

But after last summer’s camp season I started to think it was time to kick it up a notch for Isabelle.   While camp was good at developing social skills, I had always felt the activities were not challenging enough for her.  They did not work on developing any skills in athletics and they did not teach competition, deliberately avoided it.  (An aside – I always notice how programs for kids with disabilities seem to boast that they are non-competitive.  I think this is a disservice to our kids – they need to learn how to work to their best as individuals and as a team, get the reward of success, learn things don’t always go their way despite all their efforts, learn that there are in bounds and out of bounds, learn how to defend their “territory” and learn to be assertive – in a supportive setting.  I know most parents do not agree with me about this.)  I had made some requests to the director but he had a formula and did not seem open to making changes.

On the other hand this camp provided lots of opportunity for Isabelle to do what she likes best- to perform: talent shows, plays, guest band.  The director loves music and made that a hallmark of camp.

But as the girls in her cohort aged, the more socially mature and capable ones did not return, and were replaced with girls who had more had more significant social and behavioral challenges.

Last fall a friend told me her daughter had really enjoyed another camp last summer and so we got our girls together.  Once Isabelle heard that there was horse back riding at this other camp, she got excited.  Combine that with hearing who would and would not be coming back to her old camp in her age group, she was convinced to make the change.

One of Isabelle’s favorite TV shows is Phineas and Ferb an animated show about two brothers who plan outrageous activates during summer vacation.  To get out of a rut, Phineas often says “Let’s mix it up a little.”  It’s become one of Isabelle’s expressions (she scripts many of her Disney TV shows and movies and incorporates the scripts into her conversations – kind of clever!)

So we decided to mix it up a little. I enrolled her in the new camp for 7 weeks. Then I had to figure out how to get her to camp since it is nearly 3 hours north of Toronto.

Isabelle seemed excited and told her old camp friends she was not returning.   (They seemed disappointed.)

Campers post season get together – Isabelle last on left.

I started to have some concerns when I found the director resistant to introducing us to other campers from our area.  He was worried that if Isabelle did not connect well with one person that she would think that everyone at camp would be like that.  His comment surprised me because – he should know-  people with autism typically do not generalize.  I called with other questions since there were no parents I could talk to and he was put off by my questions.  Perhaps I should have listened to my gut – several times.  But I found I was on a path and did not want to go back.

After Isabelle was enrolled, we learned that the one girl she knew had changed her plans and was not going to attend the first session of camp.  That meant Isabelle would not know anyone at camp!  And no one at camp knew her. We never visited the camp or met the director – he just requested I send a video of her that I recorded and encouraged us to register.  I guess that was just too big a risk that I took.

In addition, I learned that, unlike her previous camp (and most others) this camp did not use a web service to post photos so parents could see camp life nightly.   They did not allow camper-parent calls and did not have scheduled parent-counselor calls.  So I would have no contact what so ever!

On July first  Isabelle and I  flew up to the Toronto airport and with some searching we found some camp staff waiting. I was not very impressed with our greeting, but I chatted with the counselors – trying to get more information about camp and helping Isabelle get connected with the staff and the one other girl camper waiting for others to arrive before taking a bus on to camp.  After about an hour Isabelle seemed ready for me to depart so we hugged good bye and I flew home (with huge anxiety.)

I called camp and got to talk with the counselor twice in the first two weeks; learning that Isabelle was having difficulty (but not clear why).  She was “running away” when she was stressed (typical) but they did not seem to understand her need to separate.  So I was able to convince the director to let Isabelle and her head counselor talk with her therapist from home.  (Her wonderful therapist told me she talks to one camper every night for 5 minutes!)

Camp is also supposed to be my vacation from my work of parenting a child with special needs.  But July was the most unrelaxing month  that I had had in a long time.  We got a few letters from Isabelle and they all said ‘I’m having tons of fun” but as I said, her language and writing skills are not very sophisticated, and she did say she was writing during her academic period  (ie, a counselor was with her).

Finally visiting day came.

Isabelle greets Dad at camp

We had a wonderful reunion with Isabelle.  And I got to see what really was happening at camp. We saw her in the camp performance, in the ropes, waterskiing, and swimming.

The director never made an effort to greet parents; I had to go searching for him.  And he was not very interested in talking.  None of Isabelle’s bunkmates were introduced to us and none seemed to acknowledge her.  The counselors, while very sweet, seemed inexperienced.  They did say they enjoyed Isabelle, that the rest of group was “very negative” and that they were surprised (!?) at how intolerant they each were with each other’s challenges and oddities.  All the girls were going home except Isabelle.  We spent the day watching her in various activities and in the camp play.  We did feel she was getting the challenge in activities that we had hoped for.  She was climbing, skiing, swimming and horseback riding.  The camp facilities were very nice but the food was horrible.

In the end, I felt that Isabelle was happy but I still questioned if the change was a good thing.

Paul and I made a “side by side” comparison.  Note “new camp” is only based on our one day visit.  Ratings:  1-5 (where 1= poor and 5 = outstanding)

	Old camp	New camp
Number of campers	140 boys and girls 10-18	300 boys and girls 10-18
Number of sessions	1 7-week session	2 sessions: 4 week and 3 week
Counselor/camper ratio	1 to 2 +/-	1 to 2 +/-
Transportation to and from camp	Camp bus	Plane (extra) and camp bus
Social hall	1 (dirty quanset hut)	3 (wood structure)
Dining hall	2 (poor acoustics)	2 (half the campers eat in a basement)
Cabins	2	3.5
Waterfront (s)	2	4 (3 separate for different activities)
Sports Fields	2 (did not see much use, no lines)	2 (did not see much use)
Food quality	3.5 (based on visiting day0	1 (based on visiting day)
Activity variety and quality	2-3	3-5
Opportunity for challenge	2	4
Actual challenge (w/o pushing)	2	3
Camper interactions	5	Saw none with my camper
Counselor skill	2-4	2-3
Communications within camp	4	2
Academics	4	2?  Did not get a report
Evening activity	4	?
Opportunity for campers to perform	4	?

Having it all?

Did you read the article in The Atlantic, by Anne-Marie Slaughter:  Why Women Still Can’t Have It All?  The article discusses the myth of ‘having it all’ for women who are educated with professional careers and families.

The writer points out many myths but never addresses the challenge of being a professional woman with a career and who has a child with a disability.

At one point in my life, I had what I would consider a fairly successful career which began after finishing my full time graduate school education and receiving an MBA from Boston  University.  My first job was assistant to the president of a manufacturer of housewares- an amazing job where I worked 16 hour days but had a limited social life in a small town in Maine.  So, I moved on to a marketing manager position at Dansk, a designer/manufacturer of dinnerware, then account executive promoted to account supervisor at a leading direct marketing agency in NYC, and then reaching Director of New Member Marketing at Doubleday Book Clubs when I was in my mid 30s.  I was exceeding our marketing goals but was forced out due to sexual harassment.  So, I then started working for myself as a direct marketing consultant, with clients mostly in the publishing industry.  I was well known in my field and was able to leverage my network for business development.  I partnered with a leading publishing consulting firm and worked on many interesting direct marketing assignments with clients like Hearst, TV Guide, and Jim Henson.  But working for yourself does not help your career progression.

At this point, I got married and my husband moved to New York City.   I then took a consulting assignment with an advertising agency that needed help to pitch IBM for direct marketing.  After winning the account I continued to work on the business.  After about 10 months I was invited to join IBM to start up interactive direct marketing to explore how to use the web for marketing.  This offer came on the day found out I was pregnant.  Not only did the assignment sound great, but I figured the client side would be a better place to be as a working mother.

I did not join IBM in a management position but assumed I would quickly move up.  Returning to IBM after a 4 month maternity, my management had changed, more layers were added and the staff had grown in our start up team, and I no longer had momentum. 

Around the time my daughter was 12 months old I started to think she was not meeting her “pointing” milestone, and by 18 months she had lost words she use to say.  I began to focus on her developmental delay and undertook an unsupported lonely search for help.  We then moved from Manhattan to the suburbs.  While work was interesting I could not put in  the commitment to pursue management positions because of all the research I needed to undertake for my daughter – the networking, the evaluations, the appointments, the treatments, the coordinating and negotiating – not to mention the supervision of therapies in my home.

Many mothers of children with disabilities take on the role of project manager/ general contractor for their special needs child as their full time job.  And it is a full time job.

Managing the needs of a child with a disability is so demanding that often professional women give up their careers or chose to take a role that is less visible and demanding – which in essence is a career killer.  I recall a professional woman who shifted to a part time role referred to herself as CEO of her daughter.

Some of us don’t have the luxury of eliminating one of the household incomes so we still work to earn a paycheck even if it no longer means professional recognition and advancements.

It is often humiliating for me to see women who were peers of mine 10, 15 or 20 years ago now in high profile executive roles.  I wonder how they do it when they also have children – although none have children with disabilities.  Or almost none.  A Vice President in my management chain told me that her mother lived with her to raise her 2 children, one with a learning disability, and that her husband was very actively involved and available.

My husband is actively involved with our daughter but he is gone from the house from 6 am to 6 pm, and he does not have the skills or comfort with the networking, research, and advocacy work needed on a daily basis to help our daughter get the services, education, and social and emotional support she needs.  He does plenty of other things to support the home (like dishes, laundry, and food shopping; in addition to being a playmate for our daughter). 

Since there is no manual or prescribed roadmap for treating a child with autism (because autism is really autisms), I felt the best way to create the individualized program for my daughter was to learn from other experts – parents.  So that means building my network, taking the time to learn from others, pushing and prodding schools, testing and trying various therapies, medications, behavior interventions, taking classes in advocacy,  reading, joining support groups, starting up a PTA subcommittee for special education in my school district, and so on.    Even if I could afford to hire full time domestic help, I could never leave it to anyone else to do the job of CEO of my autistic child.

All of these activities used some of my best skills:  research:  asking questions, seeking answers, trials and evaluations, innovation, building cases for change, and making change happen.  And since my motto has been ‘good enough is not good enough” I could never rest on achieving any particular goal.  (And as many mothers of special needs kids know, as soon as you take a breather, you notice things start to fall apart.  This is known in physics as entropy.)

On the other hand, the activities that are important to professional success are not necessarily those – they are the ones I am least competent in:  it use to be called office politics:  self promotion, jockeying for position, presenting to executives, and doing things I don’t believe in to satisfy someone else’s position.  All that takes extra attention for me since it does not come naturally. 

At some point I must have made the decision and choice to focus at work on what I am good at naturally and not focusing on the areas that would actually advance my career in order to have the time and energy to also be CEO of my daughter.   (Did I mention that IBM is considered one of the best companies for working mothers?  Many of us work full time from our home offices, which, if you were wondering, does not mean we work less but actually more – our ThinkPads are on 24-7 and I often am on calls before 8 am and after 9 pm since we are a global company.  As US jobs are eliminated and replaced with people in “growth markets”  (aka India) the staff in worldwide jobs need to work closely with our colleagues in these locations in other timezones. 

None of this is what I expected would happen when I graduated from Boston University Graduate School of Management with an MBA in 1981 (when women made up 50% of my graduating class).

This week my company gave out its annual raises to staff.  I got my 1%.  That is what they give to non-management employees that perform better than average.  (Take note, public employees!)  The US inflation rate is 3.5%.   My compensation has essentially remained the same in the 16 years that I have worked at this company that was deemed one of the best companies for working mothers by Working Mother magazine.  

So while my career has stalled, my definition of “success” has changed.  It is now enabling my daughter to be able to live an “independent” life from her parents with the supports she needs from family, community, and government.  And it is also to change the community, and the world, to accept people like my daughter as valuable members of society deserving the same respect as “typical” people.

Do you feel like you have it all?

 

 

 

 

 

 

What is the value of a high school diploma?

What is the value of a high school diploma?.

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