Guardianship

I recall feelings of anxiety on the subject of guardianship even several years before my daughter's 18th birthday. I worried about the cost, the process, and who to have help us. I asked around my neighborhood looking for a lawyer who was willing to help us. I found someone willing to represent my daughter, which is required. He was someone she knew from church and she felt comfortable around. My husband and I decided not to pay a lawyer to represent us. We did not feel it was necessary because my daughter was not contesting our request for guardianship. We met with the lawyer once to give him information so that he could prepare the paperwork. We had obtained a letter from my daughter's psychiatrist and support coordinator that she could not take care of herself financially or safely. Her lawyer filed just after her 18th birthday and we were given a date just a few weeks later to appear in court. We waited for a short time in the court room for our names to be called. We had gone over with my daughter what would happen in court - which basically entailed standing before the judge and answering a few questions. He asked her if she wanted to continue living with us and she said yes. It was over and done with in a few minutes. We were granted full guardianship. We waited outside the courtroom for a few minutes while the lawyer obtained several notarized copies of the court order for our personal use. That was that. Now I could go home (several hundred dollars poorer) and keep doing what I had been doing for 18 years and would continue to do as long as I was able.

In working with families I have found two main objections to obtaining guardianship - both financial in nature.

1) The most common concern is being able to afford the cost.

2) A second concern is the fear that you are now financially responsible for any potential debts. This is not true. One father had a daughter who functioned well enough to sign for cars and other expensive items. Her father found that obtaining guardianship would enable him to cancel such agreements on her behalf, without obligating him in any way. This was a huge relief to her family and protection to her. She could no longer be taken advantage of.

Guardianship vs. Power of Attorney

What is the difference between GUARDIANSHIP and POWER OF ATTORNEY? GUARDIANSHIP can be limited or full. Often times guardians have designated powers in relation to the financial dealings with an impaired person, or their powers may include decision making in regards to living arrangements and/or marriage. A judge determines which decision making rights the individual will retain and which will be granted to a guardian. POWER OF ATTORNEY also varies in scope. The primary difference between the two is that GUARDIANSHIP is granted in court by a judge and as a result is a matter of record. POWER OF ATTORNEY is done through a lawyer and the rights are voluntarily given up by the individual themselves with the lawyer as a witness. GUARDIANSHIP is often looked on more favorably because POWER OF ATTORNEY is not recorded anywhere in the state, so that it is difficult to track if a person wants to revoke it. It would be highly unusual circumstances for someone, not of sound mind, to be able to make this determination for themselves. For that reason POWER OF ATTORNEY is rare for individuals in DSPD services. This is because many of them have qualified for services with the limitation of "learning" and are not able to understand what rights they are giving up. POWER OF ATTORNEY also has a bad reputation in general terms because of many historical instances where trusted friends and family members took advantage of individuals.

Sisters.....

More than Peaches

It started as a typical day. I went to visit a friend – Ann. I sat on the bar stool at her kitchen counter and talked while she prepared lunch for her twins. I watched as she popped off the lid on a jar of home canned peaches. “The girls just love peaches, Ann mentioned.”

My first thought was, “Who wouldn’t?” My personal favorites were Elberta and Red Haven. It had been a long time since I’d had a tree ripened peach. I tried not to drool.  I watched as Ann placed some fruit in the blender and turned them into a peach puree.

We then went to the front room where her adult twin daughters were waiting on cots while watching television. They responded with smiles to their mother’s voice. Ann fed Karen first, starting with a high protein supplement. When she was finished with that I watched her carefully administer the peach puree into the feeding tube connected to her daughter’s belly. That scene will forever be frozen in my mind.  Realizing those peaches would never touch her lips, I watched, holding back my tears – grasping for the first time what those peaches really symbolized.

Mistaken Identity

Hayley loves to make lists and carry them around with her until they are tattered and torn. One of the lists she frequently works on is a list of all the children she plans on having. She has completely worn out several "baby names" books. [See photo: she is reading a baby name book while we are camping.]  These lists are exhaustive with pages of children's names. I have seen lists where she will pick a child's name for each letter of the alphabet - that's 52 children with a boy and girl for each letter. She will also assign them middle names. I have seen many of these lists over the years. She has a boyfriend with a seizure disorder and they talk about getting married when Jesus comes and they believe they will be healed from their disabilities.

I never realized how much having a handicap was a part of her identity until one day she showed me her list of children and each one on the list had a different handicap next to their name. She had blind children with a seeing eye dog, autistic children, children in wheelchairs, deaf children, and the list went on. I objected - reminding her, "But, I thought there wouldn't be any people with handicaps when Jesus comes." To this she irritatingly replied, "Don't trash my dreams!"

This statement rang in my ears for days, weeks - months even. My daughter didn't have the ability to see herself, in the future, without a handicap. As I listened and looked around at myself and others, I began to see that my daughter wasn't so different in this respect. I saw many people's identity as mistaken - barriers - holding them back, frustrating them. My eyes were opened and I realized more than ever before that our identities should not be based on what we do for a living, how many children we have, our IQ, our status or any other thing that is temporary. Our true and unchanging identity is that we are children of a Heavenly Father who loves us. Anything else is a mistaken identity and too limiting.

It's not a lie if YOU believe it !

If there is one thing Hayley could be accused of it is being honest. When she was young she would tell complete strangers what kind of nose they had. People typically had a hawk, pig, or bear nose. She didn't mean to be rude; she just happened to be noticing noses that year. It is difficult to censure someone who had difficulty learning to talk in the first place. A part of you wants to celebrate that what they said actually made some sense and the other part of you cringes at what came out.

One of the ways you can tell an honest person is that they will always tell on themselves. Hayley has done this since she was able. It didn't matter that there might be a consequence as a result; she just had to tell the truth, no matter what.

What has made me sad, over the years, is when she has been accused of lying. I have worked with Hayley for quite some time to try and see other people's perspective. I have had some success but this is a very advanced skill. Today, for instance, she was showing me an American Girl doll she wanted to buy. One of the reasons she wanted to buy it was because it looked like her. She said her hair was parted on the left like hers. The dolls hair was actually parted on the right, but I was unable to make her understand that if the doll was facing the same direction that she was facing, their parts would be on different sides. This is an indication of her inability to see things from other perspectives.

Simply put - If Hayley believes it, it must be true. That poses problems when trying to get along with co-workers, job coaches, and even family members. Add to that Hayley's extreme sensitivity and you have now complicated things quite a bit. She is able to detect such small things as a sigh, deep breath, and many other subtle signs of irritation, frustration, anger, fatigue, or impatience. The problem is she often interprets those signs as directed toward her.

If she sensed someone being impatient with her she may state: "Stacy yelled at me!" Stacy thinks Hayley is intentionally lying. But I have learned to ask questions such as:

What words did she use when she yelled?
Where was she standing?
Was she looking at you?

Eventually, through questioning her, I will uncover that Stacy didn't actually yell or say anything at all. Hayley sensed some tension and "read their mind".  The tension made her feel as though they were angry and wanted to yell at her. She will believe this so strongly that, in her mind, it may as well have happened. I can usually talk her through this but it is time consuming. It is much more difficult to do if the person over reacts and calls her a liar or says, "you're not telling the truth". This confirms Hayley's assumption that they are angry with her.

So, if you ever had two people telling different stories and wondered which one was lying - maybe neither.

True Blue Hayley

Too often I feel like I'm holding back the full extent of my feelings. I get misty-eyed in movies, watching baby product commercials, and when I see small furry animals.  I can be shy, and I get my feelings hurt easily.   I feel as though I'm constantly holding back a tide, just enough so I don't look crazy or embarrass myself. Being emotionally vulnerable and honest with people can be scary and I guard my heart.  But I know I've missed opportunities to show people I care and to develop relationships because of this.  

This concept of holding back, or down playing emotion would never occur to Hayley.  Happy, sad, afraid, frustrated,  enraged, devastated,  disappointed,  enamored, proud, convicted, impressed, or full of joy- she doesn't filter her emotions.  You always get true blue, unadulterated Hayley.  I feel so blessed that despite, and perhaps because of her Autism, she expresses her love freely and without fear or hesitation. Her love is unconditional, and without cynicism.  It is quite a thing to behold, the purity and sincerity in her voice when she tells you she loves you. I love that she strokes my hair or cheek when she tells me.  I love that she wants to link arms when we are out walking. I love that every time we are together and a prayer is given, she rests her head on my shoulder. She gives compliments and means them.  She is a constant reminder to me that it's okay to feel deeply, and let it show. 

Holding Time

We sat across from each other in one of the class rooms with the door closed. The message was clear to Hayley - we aren't going in until you can put this behind you. I wasn't sure how long it would take. I asked her what she could do to make herself feel better. She said she didn't know. I began with the silent scream. She didn't want to participate but within a few minutes was getting into it - tensing her body and pretending to scream at the top of her lungs - then relax and repeat. She began laughing, which increased as we progressed through the breathing portion of this familiar scenario. Breath in.... breath out... breath in... breath out... By the time I start singing, "it's alive, it's alive, it's ali yi yi yi yive - she was smiling and happy. She gave me a hug and said thanks for having "holding time" with me. Holding time?

I had not thought about "holding time" for a long time - for years even. When Hayley was young she spent a great deal of time (and still does) going on and on about negative things.  I was afraid to pay too much attention to her negativity as I did not want to unwittingly reinforce it. I tried the planned ignoring - refusing to acknowledge the negativity. I thought to myself,  surely she must learn to be positive if I continue to model positivity. After months (years even) without any change I felt inspired to try something very different which I called "holding time". I began one night by taking her to lay on her bed next to me with my arm outstretched and her head resting on it. I started simply with the following statement. "I'm mad because" ..... and I stated everything I could think of. Then I continued, "I'm happy because" .... and relayed an equally long list of positive things. Then I simply said, "Your turn." She immediately understood and began her mad list. This was easy for her. I thought the intent of the exercise was, in part, for her to delay or save up her negativity and vent it all at once during "holding time". What came as a surprise to me was how after the mad list was completed, she began a long list of positives as I had modeled. This came as a great shock to me as I had NEVER heard her be positive in any manner close to what she was doing. I suddenly realized that my refusals to listen to her negativity never allowed her to get past it. She was only capable of being positive AFTER the negativity was expelled. We continued this for many years. Somehow this practice had gone by the wayside although the need was always clearly there.

I was surprised that "holding time" had so quickly come to Hayley's mind. But even more surprising was her calling the interaction we just had in an empty Church class room on cold hard metal chairs - "holding time".  Missing were the bed and close physical contact during our interaction. I concluded that while the notion of "holding time" had always represented to me the physical contact of "holding" another person close, Hayley's concept of "holding time" was to hold her heart or feelings. For Hayley - real listening and love are one in the same.

A+ for Spelling

Keeping it real... 

In case you cannot read the writing it says:
Dear Ian, I'm sorry for flipping you off and for saying Frosty the Snowman bitch. Love, Hayley
I don't remember which Christmas this was but it seemed appropriate for the season and I am glad I can finally laugh about some things.

Autism and Speech

The spectrum of ability in regards to Austism and speech is quite varied. Perhaps one of the reasons for the increase in diagnosis of Autism is that many years ago this diagnosis was reserved for those without any speech at all. Although Hayley had delayed speech she could make sounds. As her ability increased I would find her repeating phrases from movies. She had good voice inflection and could answer direct questions. Although the answers often were completely unrelated to the question.

It was during her interview for kindergarten that I first noticed that I had a subconscious knowledge of her vocabulary. Not that I could have sat down and made a list of the words she knew. But when someone asked her a question, I often found myself rephrasing it for Hayley. This served a dual purpose: First, it allowed me to model how to communicate with Hayley. Second, it allowed Hayley the greatest chance at being able to understand the teacher.

Because Hayley did have some language ability, my first and foremost goal was to expand that language. I found myself talking to her a lot. I acted out what I was trying to convey with dolls. Doing this provided the first signs of understanding and recognition beyond parroting. This allowed me to show, in my limited way, how people interact. The dolls became her role models and I used them often. When I could tell that she understood a phrase I would restate the phrase with one new word. This method was very successful with Hayley. One of her "special needs" teachers was disturbed that Hayley was interacting with the dolls on her t-shirt in class. She complained that this was disruptive. I shook my head and wondered how she might have felt differently had she witnessed how these dolls helped Hayley acquire her language skills.

For a long time Hayley was only capable of understanding "concrete" language and had a very literal understanding of it. Here are some examples.
Age 13
Hayley: I spilled my milk.
Mom: Okay, take your plate over to the sink and I'll clean it up.
Hayley: You mean my bowl?
Mom: If I accidentally say plate instead of bowl you don't need to correct me. You know I was talking about what you were eating on.
Hayley: I don't eat on it, I eat out of it.

Age 14
Three days after receiving a consequence to pick up trash at school during P. E. time up until Christmas, Hayley states in a sad voice at home: "I can't come to Thanksgiving because I have to pick up trash until Christmas.

Hayley picked up swearing at school. One day she was angry at me (again) and shouted the following:

"Son of a B----, I am a daughter of a B----. Oh, I'm sorry - I called you a son."

Note: Hayley approves this post. She just read it and laughed and said it was okay to share.

Watch me

Hayley has been on a "watch" kick lately. It started this summer when she wanted to buy a Snow White watch she saw in a local department store. It was totally impracticable, but cute. It was silver colored with charms all around and fit more like a bracelet. I tried to talk her out of it but she had money that she had earned, so we purchased it. What's worse was that she insisted on wearing it to work. Keep in mind she works in the dish room at the local University. By the end of the day she had shattered the face of the watch. Sure, she was disappointed but not for long because she intended to buy a new watch. When we go places she always has to look at the watches. She bought watches for Christmas presents and several for herself. The funny thing is she carries her cell phone EVERYWHERE and when she wants the time - that is where she looks. Last week she bought herself a watch we ended up taking back the next day because I couldn't figure out how to keep syncing the day - date - and time. The store set it and she kept winding the watch and messing it up. A friend of hers bought her a butterfly watch that attaches to a belt loop. It didn't work so they returned it and bought a different watch. An hour later she said she didn't like it and wanted to go back and get another one. I told her this one was a gift and it would hurt Rachel's feelings if she returned it. I tried to explain that was different than her buying one with her earnings and changing her mind. She didn't want to hear that. Perseveration is a characteristic of Autism. When Hayley was little she used to play with her toys in a unusual manner. She would line them up in long lines. When looking at books she would use her finger to circle things - turning each page and repeating the process. Rocking was another form of perseveration. People with autism do things that have an on and on quality to them. As we worked to eliminate these behaviors when she was young, we might extinguish one behavior only to see a replacement behavior crop up with the same on and on characteristic. I don't know how long the "watch" phrase will last, but a few watches never hurt anyone. I'll wait and be patient - just watch me.

Love, Susan (Mom)

Breakfast in Bed

12.2011
After early morning haircuts for the two of us, Hayley and I are eating breakfast at her work. 
A very happy Hayley states in matter of fact tone, 
"This is like eating breakfast with Heavenly Father." 
Hayley takes note of my puzzled look. She then explains (dripping with sincerity)
"If Heavenly Father and Jesus were my house guests, I wouldn't really know what to say to them, but I would feed them a really good breakfast in bed." 

Love, Susan (Mom)

Yes, Virginia, There is a Santa Claus

After seeing Santa at Disneyland recently, Hayley has decided that she once again believes in Santa Claus. The irony is that she was able to go on line (unassisted) and find a website that facilitates writing an email to Santa, and sent one requesting a Mac book Pro. She got an email in return which was proof to her that he does exist. I asked her what about all the years she didn't get any presents from him. She said it was because she didn't believe.

Mom: I think I will send an email - like you did - and ask Santa for a lap top.

Hayley: You don't need a lap top, mom.

Mom: How does Santa know if you NEED vs. WANT?

Hayley: (changing the subject) You're too old. You're almost as old as Mrs. Claus.

Mom: Oh really, is there a cut off age for presents?

Hayley: Yes - 50, and you're way past that.

Love, Susan (Mom)

My mother was right.

Hayley will be 25 in February. When she was young my mother told me I should be recording all the events and things that I learned while raising her. I remember looking at my mom and saying, "Mom,  I don't want to remember." That just goes to show how deep my despair was at times. My mother was right. I should have written down this long journey. It would be worth it if it only helped one other person. You would think it would be a story of my daughter's progress, but you would find it was just as much a story of my own progress. For you see, I like who I am today much better than the person I was and I have my daughter to thank for that! 

Love, Susan (Mom)