Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



Vacation Week: Always an Invitation for a Problem

I just checked and no, Mercury is not in retrograde right now so I am going to have to find something else to blame my problems on right now.

I encouraged Yelena to call her friends and arrange some times to "hang out" over the vacation week so that she wouldn't either be sitting around the house watching TV all day or at the library on a computer all day. She did actually make a few attempts - more like a few texts but nothing much came of it.

Yelena has a friend, M, whose mother is a good friend of mine and who lives right near where I work. Sometimes it works out that I take Yelena to work with me in the morning and she hangs out with me for awhile (or rather she hangs out in my office on my computer) and then M and her mother pick her up for the day. After work, I pick up Yelena and we all go out to dinner. It can be a really nice day.

Wednesday I brought Yelena to work with me in the morning. I took her around and introduced her to everyone. She had breakfast with some of the residents (I work in an assisted living) and spent some time with me talking to the residents. At one point, the residents were having their mid-morning juice and Yelena said she would like a glass of juice. I got her a glass and led her to the juice machine (5 kinds of juice!) and then I had to run back to my office for a minute. When I came back, we both went to my office and I set her up on the computer. While we were there, one of the other staff members knocked on my door and asked us if we had seen a can of juice sitting on the counter when we were in the kitchen getting juice. She said that it belonged to one of the residents and it was now missing.  That kind of conversation always sets off an alarm in my head. I said that I hadn't seen can of juice and Yelena said she didn't see it either. But I knew...

Later, when her friend came to pick her up, I brought her up to the lobby in the elevator and as she was getting off the elevator, I could see something hard in her pocket and I put my hand on it and felt the can. I asked her to please give it to me. She took it out of her pocket and gave it to me and our eyes locked for a few moments. She left with her friend. I took it to the woman who had asked us about it and asked her if she had seen Yelena actually take it and she said she had (I thought so). I said I was very very sorry and returned the can of juice. In one sense, yes, it was just a can of juice.

I called my husband to tell him what had happened and we decided that she wouldn't be allowed to have any screen time for the next few days and that we should let her go to her friends house the next day.

After work, I went to my friends house and Yelena and her friend were both in good spirits. My friend, unfortunately, did not feel well so I offered to take both of the girls out for dinner. We went to get hamburgers (at an organic hamburger place) and during dinner, her friend said she wanted a milkshake for dessert. I said we weren't going to get milkshakes (because 1) I didn't feel like buying them both $7. milkshakes after I just spent $35.00 for organic hamburgers and fries and 2) none of us needed the extra sugar, fat and calories.)

She asked me several more times about the milkshakes but I stuck to my guns. I finally relented and said that I wouldn't get milkshakes but we could all walk down the street to a really good ice cream place and get "small" cones. She said OK and walked ahead of Yelena and I on the way to the ice cream store. When we got there, she immediately pointed to a poster of a large sundae and said that she wanted it. I said the deal was a small ice cream. She said that she didn't like small ice creams she wanted a big one. An argument ensued and she finally ordered a cone and excused herself to go to the bathroom and chill out (an excellent idea). And this wasn't even my child! Yelena was good spirited throughout.

When we got home, Yelena immediately asked her father if she could watch TV. He said that he would have to discuss it with me. She turned and asked me if she could watch and I said "No". Which is not what I am supposed to say according to all of the training we received at the Attachment Institute but I couldn't help myself. I am supposed to say "Yes, as soon as I feel close to you" but I didn't. She asked why and I said that she knew why. I started to go upstairs and Yelena turned around and said something to me (which I can't remember exactly at the moment) intending to start a fight. I went upstairs and went into the bathroom to put on my nightgown and she stood outside the bathroom and took down a picture from the wall that she had done when she was about 4 that I loved. She asked me why I liked such an ugly painting and I said i thought it was beautiful. She took it out of the frame and tore it up into little pieces. I didn't react. It went on for about 45 minutes: Why don't you send me back to Russia? Why do you hate me so much? Why did you adopt me and take me away from my birth mother? Why didn't you...?? I hate to sound callous, but I have been through this same tantrum several hundred times. After awhile, she calmed down, went to her room for awhile and came back in tears: "Mommy, I am so sorry. Mommy, what's wrong with me??"

The next morning, I didn't see her before I went to work but my husband said she was having a good day. She was supposed to meet a friend and she went to her house and then they went to the mall together (typical teenager). Everything seemed OK (more or less). I work late on Thursdays and then usually go out with a friend for dinner because I wouldn't get home before she went to bed anyway.

Friday morning (my day off), my husband came to wake me up and told me that the father of Yelena's friend (who she had seen the day before) wanted to tell us that Yelena had stolen her friend's iPod (with internet access). She stayed in her room all day (unusual for her unless she has something electronic to entertain herself with). In the afternoon, I went into her room and she was lying in bed with headphones on her head which were connected to something under the blankets. She said she was just taking a nap (she never takes a nap). I sat down on her bed and I asked her to give me the iPod. She stared at me and I said that I knew she had her friend's iPod and that she needed to give it back. I think she was shocked that I knew. Somehow, she still doesn't get it that I have eyes in the back of my head and usually know what is going on. She thinks that what she does is invisible somehow, She started kicking me and telling me to get out. I asked again calmly for the iPod. She said she would give it back before dinner. I said OK as I was tired of being kicked. This is parental abuse (something no one ever talks about) not child abuse here - I have the scars to prove it. I asked if she was then going to stay in her room until dinner. She said "What?? I can't even go to the bathroom???"  I stayed in my room to be near her in case something happened. My husband texted me from down stairs: "Are you OK?" I texted him back: "I am physically OK. Very sad and disappointed and frustrated and angry and feeling sorry for myself and scared."

My husband called the crisis team. We are always divided on this issue. He is always quick to call and I always hate to call them in. They came at 6 pm and we explained the situation to them. They went upstairs to speak with Yelena and came back down after about 45 minutes and said they finally got to talk with her and she agreed to give it back and go over a safety plan with them. They went back upstairs to do the safety plan with Yelena and came back and said that she had agreed that we could all go over the safety plan together. We all went upstairs. Her door was closed and she wouldn't say a word. The woman from the crisis team read the safety plan twice. We had even altered it to say that she could have my kindle to watch Netflix after she gave the iPod back and apologized to her friend. No response. I knocked and went into her room. She was wild eyed furious. She told me to leave and started yelling at me so I went back downstairs. The crisis team came down in a few minutes and said that they felt like she was seriously escalating and that they would give her some time and they would go out side and then come back and check on her again. We talked about looking for CBATs, etc. When they went back upstairs after about a 1/2 hour, she was calm. She said she didn't want to talk to us. They decided to leave and said we should call if anything happened. They suggested I leave a note under her door that there was dinner downstairs for her and we would respect her not wanting to talk. My husband went to the Y to work out. I made dinner.

About an hour later, Yelena came downstairs as if nothing had happened. Cheerfully got herself some food and sat down next to me. She started eating and then handed me the iPod. I said "Thank you" and she kept chattering away. She said she wanted to go to sleep and went upstairs. I gave her her meds and she went to sleep. It's 11 am Saturday now and she is still in bed. All this emotion is exhausting.

The only other thing that I want to mention is that she has been talking a lot about her birth mother. She said that she sees her birth mother and it is terrifying to her. I told her to tell her to go away if she was frightening her. She said she told her that but that she still keeps coming to see her. It's hard to tell if she is really hallucinating this or if this is drama queen stuff. She has been quite obsessed with her birth mother recently (never her birth father) and I understand that this is a natural part of adolescence - trying to figure out who she is and where she belongs in the universe. I have always told her that her birth mother loved her very much and I don't know why she could not keep her but she loved her so much that she tried very hard to put her someplace where a family like us would find her and love her. This is the first time that she has expressed anger about having been "given away" and I think it's good for her to acknowledge and express this anger. It's just so hard for her. For all of us.


SNAFU (Situation Normal, all F---ed Up.)

This is an email I sent to Yelena's teachers and therapists this week:

I wanted to give you an update on Yelena as she seems to be struggling right now and any help you can give her on this issues would be appreciated. My husband and I have noticed that she is throwing her meds in the toilet. We have been trying to have her swallow them in our presence but mostly she refuses. When questioned about it, she says that she doesn’t want to talk about it. We have told her that if they make her feel odd or bad in any kind of way, she needs to let the doctor know and we can change dosages, etc. We are going to talk to her meds provider about the med situation. I know she hasn’t been taking the Concerta but I am not entirely sure about the others.
Last week, she stole $40. from my wallet which was in my locked car in the drive way. She took my keys which I found in the kitchen. I asked her for the money back and she didn’t deny she had taken it. I spent quite a long time with her and she finally said she would write down what happened. She gave me $7. change and said she had the other $20 in her pocket. I asked her what she had bought and she told me she had bought a sprite. I told her that was a very expensive drink and she admitted buying a box of cookies at the gas station down the street.  I don’t know if she spent the rest of the money or still had it. I asked her to go through her room with me and we could take out other items that did not belong to her and return them. We found several of my husband’s shirts, a nice set of headphones and a leather binder.  
She has decided that she will only wear my husband’s shirts and her black jeans. Unfortunately, this means that my husband doesn’t have any shirts because every time I take them out of her room, she just steals them back again. The other day I said something like: “I notice you really like those black jeans. Do you want to go shopping and get another pair? “ She responded that she didn’t want to talk about it. She has not washed the jeans in weeks. Every once in awhile when I insist, she takes them downstairs and then brings them back upstairs about 1/2 hour later (not possibly long enough to wash and dry them) and she shows me they are warm and smell like the dryer sheets (but they haven’t been washed.) 
Her personal hygiene has been deteriorating as well. When I do get her to take a shower, I am not sure that she is using soap or shampoo. I put the shampoo in the bathroom in a particular way and it hasn’t been moved in weeks although she does wet her hair and use conditioner. She puts the same dirty clothes back on after her shower. 
Sometimes, we use taking a shower or changing her clothes as a prerequisite to a privilege such as watching her DVD player or Netflix. The other night, her DVD player (which I had bough 2 weeks ago) didn’t work and she threw a full blown tantrum. She tore up her books, punched her hand through the wall in several places and told me she wanted to kill herself. She also said that she wanted to go back to her birth parents who were the only people who had ever cared about her (that’s not the first time I have heard that but it is so patently ridiculous that I don’t react at all to it.) She said: “OK, now send me away again. All you do is send me away.” I told her that I would rather have her stay with us. She was really looking for a fight from both my husband and I but we kept our cool and she finally went to bed and woke up fine in the morning. This looking for a fight and trying to provoke us has been going on for several days.  
She still goes to the library every day after school but has been good about returning home before 7 pm which I praise her profusely about. She is obsessed with the TV show: “Once Upon a Time” which has the characters Anna and Elsa from “Frozen”. She watches it constantly and things seem to escalate each week before Sunday (when the show airs) because she seems sure that she is going to do something which would impact on her ability to watch the show. She is very anxious about any possibly of not being able to watch the show on Sunday night.


The Summer That Never Was

     To go back to where I had left off, several months ago, at Camp/ Vacation/Respite/Time Out/Relief. Well, it never actually happened…
     After several weeks of 12-hour days at the library, we finally succeeded in getting Yelena to camp. I took a day off from work and we drove her three hours up to Maine. She was excited and she seemed perfectly happy - happy to be there and happy to see her counselors and her friends. We left her there and drove to the beach and had a celebratory meal of lobster and beer and a refreshing swim in the ocean.

     Everything was fine for about a week – just enough time for me to begin to feel the earth under my feet again. One afternoon at 5 pm at the end the first week of camp, I received a phone call at my workplace from the camp director and the special-needs director. I was put on speakerphone and Yelena was in the room as well. It was unfortunate (from my point of view) that she was there because I wasn’t really able to speak openly and ask the kinds of questions I wanted to but I think that was the intention on their part. It was a fait accompli as they had already made up their minds.

     The incident involved Yelena stealing Magic Cards from another camper. After the theft was discovered, she was given the chance to returning anything else she might have stolen, with complete amnesty, no questions asked.  Yelena said that she didn’t have anything else that was stolen. About an hour later, she was caught with more stolen Magic Cards trying to trade them to another child. Apparently since the incident involved other children, the staff felt that Yelena has lost the trust of the other members of the community and that there was no alternative except for her to leave. So at that point, late in the afternoon they told me on the phone that I needed to come and get her within 12 to 18 hours. When they asked me what time  they should they expect me to be there, I said that I needed to speak to my husband and would need to call them back later. Hoping against hope that my husband could talk them into keeping her, he called the director to be told that Yelena’s belongings were all packed and that she had been isolated and was waiting for us to pick her up in the infirmary.

     I took another day off of work and we drove up to Maine. When we got there we spoke to both the director and to the special-needs director whom we have known for about 5 years at this point.  We were told that Yelena had made a really close group of friends and she was welcome to stay in touch with them and would be provided with their addresses and phone numbers. We were also told that she was welcome to come back next year for a week and if that week worked out well that she could stay for another week. The special-needs director also suggested a number of treatment modalities for Yelena that when I looked them up later realized that they were for autistic children not for children with any of Yelena’s diagnoses.

     We had to back the car up to the infirmary so that no one could see her getting into the car so that she wouldn’t create a ’’disturbance”. Yelena got in the car, lay down the backseat and cried all the way home. She refused to speak with us.

     Yelena asked me for the addresses and phone numbers of her two friends which she had been promised, I contacted the special-needs director and after several months of e-mailing back and forth with elusive and evasive answers, I finally gave up and Yelena gave up asking. What bothers me most is that they promised Yelena and that promise was broken. One more broken promise in a life of broken promises and each one takes her farther and farther away from us and away from her recovery.

     A month or so later I got an email from the camp (I’m still on their mailing list) saying that if I register now for next summer I could get a significant savings for camp at the early bird rates from 2014.  I sent a note back to the director basically saying that I wasn’t quite sure how to handle this and do you have any suggestions. I was still thinking there was a possibility that Yelena might go next summer. She never replied. Thinking it through, I am not going to send Yelena for one week or potentially two weeks to this camp again where she could bounce back home at any minute, I need to find someplace where she can be for the whole summer and where they are not going to send her home because they understand that would not be the right thing to do for this child. So, I guess I am looking for another camp for next summer.

     This had been Yelena’s 5th summer there and she loved it. It was also a JCC camp and Yelena’s connection with her Jewish identity is very special to her and something the camp cultivates and stimulates really well. Camp was the highlight of the year for Yelena. We felt that they knew her and they were comfortable with her and they could deal with her. It was a special needs camp and I didn’t really have any idea that a special needs camp would send the child home for something like stealing Magic Cards. A diamond ring, a computer, an iPad maybe but not Magic Cards. I thought they would work harder to try and work it out with her. I know those cards are valuable to the kids but it’s still hard for me to understand how our five your relationship with this camp has fallen into basically no relationship.

     Coincidentally, at dinner tonight, Yelena mentioned the whole incident about not even being able to say goodbye to her friends when she left camp. She is still very angry about it and so am I.
     I don’t mean to say that I am placing the whole blame on the camp. Stealing has been a serious problem for Yelena. It is the one issue that frightens her father and I the most because it really could lead to jail when she gets older if we can’t find a way to deal with it. Yelena, of course, after crying the whole way home from camp and not really talking to us much for a few days, started to tell us that the whole thing was the camps fault, her counselors fault, etc. It is almost impossible for her to take responsibility for her actions and to accept the consequences. It is a hard thing for any of us but it seems to be an almost unobtainable goal for Yelena.