Haley's Purse

Time is a difficult concept for Haley. She doesn’t know how to tell time. She doesn’t really get the concept, I guess. For example she knows in general that if it is dark it is night, but I can’t tell her that something will happen in an hour or that we will do something at 2:00 PM. She is learning the calendar in school. She can recite the days of the week. Sometimes she can even point at the right day on the calendar, but time is tough.

Haley doesn’t really have any patience. If she wants something she wants it now - not in a minute - not later, now. When she asks for some Kool-aid she seems to really expect it to just appear in her hand. When I say “just a moment” that doesn’t cut it. When I say “I am still putting in your video” or “I will get your Kool-aid for you after I get you the snack you just asked for.”, that is also not acceptable.

It is for that reason that we have learned not to give her too much information about upcoming plans. I emphasize we have learned because that is what a lot of lessons boil down to in our house. Haley learns of course, but generally our lives have been conformed to Haley. We react. We adapt. We learn.

Sometimes it is just easier that way.

Don’t assume that we are kowtowing to our daughter’s every whim that is not what I mean. This is difficult to explain. Haley has limits. When one of Haley’s limits is reached something has to give. She has what we have come to call a MELTDOWN. It begins as a sound that I find difficult to type; it is kind of a grunt/moan/wail. Then she states her request again. She will repeat her request at an ever increasing volume. She will scream at decibels and octaves that will do damage. She will not stop. Well, it is difficult to get her to stop. That may be a topic for another day. I try to avoid the MELTDOWN.

So if we have plans to go somewhere we wait until we are nearly ready ourselves before we tell her that we are going. If we don’t, well, she wants to go right now. Her desire to go is not a bad thing however; sometimes it can be really fun. It has become somewhat of a game in our house. Let’s see how long it takes Haley to realize we are going somewhere. Let’s see if Haley can guess where we are going. And my personal favorite is when Big Sister says “Can I tell Haley we are going now?” The reaction is usually quite entertaining.

Big Sis likes to tell Haley when we are going to the Zoo or G & G’s house because Haley “lights up” and says “Yeah!” and starts packing her purse.

Haley’s purse was born out of necessity. We learned early on that when we left our house with Haley we needed to have something with us that would keep her entertained. We learned that lesson at a restaurant; it was not a pretty scene. We started out carrying toys with us, usually in my purse. We would pull them out to distract her when the waiting got bad. Haley liked to pull things out of my purse. She liked my purse. So I gave it to her.

She has many purses now. Some were given to her as gifts. She does rotate them time and again, but she still likes that purse I gave her. It is mesh so she can see what she has. She packs it herself now with matchbox cars, small plastic animals, and little dolls and their clothes, shoes and accessories and of course her tiny train engines. That purse can get very heavy and sometimes we have to help her pare down a bit.

THE Purse I gave her

I used to pack her purse. Then one day my husband told her we were going somewhere and suggested that she find her purse and put some toys in it. Then later when we told her we were going somewhere she would head up to her room and start packing a purse on her own.

Not too long ago I was heading to the laundry room and there was her purse packed and waiting by the door to the garage. It took some investigating on my part, but what I realized was that she had seen her father’s preparations for a trip he was going on and had made the assumption that she too would be going, so she had packed and put the purse by the door so she would be ready when the time came.

I can see now that each of those steps I just mentioned is a milestone. Haley learns. It does very little good to tell her that we are going somewhere at 2:00 PM, but she has learned that if those silly parents of hers are running around the house packing clothing into suitcases and food into boxes it must be time to pack her purse.

Good Morning Ginni

I don’t need an alarm clock. I have one and I rely on it, but I don’t need it.

My husband gets up at the same time every day and he makes enough noise to wake me up and keep me up. On most days Haley wakes up soon after that and if I am already sort of awake I can hear her playing on the computer. If I concentrate I can hear her big sister getting ready down the hall.

My husband's alarm does not go off he just knows when to get up. It is one of the annoying things I love about him. He gets up and blasts in to the bathroom and closes the door and turns on the fan. He takes a shower and then he shaves. Then he blasts through the bathroom door and closes it, then blasts through the bedroom door and closes it. Sometimes I fall back asleep during some of that and wake up again and fall back to sleep again.

Eventually my alarm clock goes off, it is a radio alarm and it goes off at a time of day when the jocks are talking or laughing or giving me some important news tidbit. I listen. I hit snooze. My husband gets the paper and slams the door. He pours breakfast cereal and eats it. He makes toast and puts away the dishes, slamming cabinet doors. My alarm goes off again and I find out what the weather will be like. I hit snooze. I hear big sister leave the house. The alarm goes off again. I turn it off and I get up. I know what you are thinking, “Why don’t you just get up when your husband gets up?” or “Why don’t you get up when the alarm goes off the first time? Yeah, I know. I don’t though. This is what I do. Every day. Structure is important, you know.

Today Haley was up. I could hear her through the wall that separates our room from hers. She was sighing, or yawning, or what I don’t know. It is the latest sound that she makes, over and over and over. I think it may be kind of like a tic. It started off innocently enough. A heavy sigh one morning or a really loud yawn, I may have even commented on it. I probably said something like ”Wow! That was a big yawn.” Next thing I know she is sigh/yawning all the time, every two minutes. Incessantly. It’s her thing now.

My husband comes in the room and says “Haley’s up.” I reply, “I know. I can hear her.” When I am done with my morning routine and leave my room she is not at the computer like she usually is. I look in her room and she is still lying in her bed. I smile and say “Time to get up, Sleepy Head” and she says “Good Morning (my heart skips a beat) Ginni.” What? My name is not Ginni. I say “Good Morning Mom” with a tiny inflection in my voice, which is how I usually get her to repeat after me. “Good Morning Ginni.” Crap!

“Haley, say Good Morning Mom.”

Now she just looks at me and says “Ginni.” I sigh. As we head down the stairs I explain to her that although I know she is excited to go to school and say “Good Morning” to Ginni I would really like it if she said “Good Morning” to me when she sees me. This obviously has no effect on her because by the time she has told me which video she wants to watch, which cereal she wants to eat and has crawled up on to the bar stool at the table where she will eat her cereal she states emphatically once again “Good Morning Ginni” and smiles. I look at her. I smile. She says “Ginni.” I say “Haley, I don’t know what you want me say.”

I know that wasn’t it, but by now I am tired of this game. I just say “Are you excited to go to school today?” to which she replies “Yeah” and we eat our cereal quietly.

Money. One. Two. Three.

Haley doesn't have a lot of words.  That is the way therapists would put it.  How many words does she have? Well, I don't know.  She can repeat a lot of words, but are they hers?  Maybe not.  So it is always a beautiful challenge (for me) when she uses some of the words she has.

This morning when I began making her lunch she said to me; "Money. One. Two. Three. Four."  The look on her face was serious, searching. It couldn't be ignored. So I looked at her with a look that I must use frequently, because she recognizes it. Mom doesn't get it. So again she said "Money. One, two, three, four dollars." 

It was then that I clued in.  At this point I had a feeling that she wanted money for lunch.  She did not want me to continue to make her lunch. She had plans to go to the Mall.  I didn't want to offer this as a suggestion to her however. I don't like to put certain ideas into her head. We get a calendar for each month from her teacher, so I know when the school outings are. I knew today was a Mall day, but not for her.  So I was quiet.

She looked at me now and said "Money, Mall. Haley."  Oh no, here we go. "Haley, you are not going to the Mall today.  You went two weeks ago.  Let's look at the calendar."  Then I began to go over the calendar with her, hoping she would understand. I never really know how much she understands.

I showed her which day she had gone to the Mall and that this was also a Mall day and then I told her the kids names that would be going to the Mall today.  I told her she would stay at school.  All this time I had been pointing to the calendar.  I then turned to my daughter.  I didn't see the tear that she wiped from her face, but I saw that motion.  I saw the way her eyes glistened.  The way she stood so still, so small.  I pulled her toward me and held her. When I backed away I smiled at her and said "You will have so much fun in school today!"  She said "Fun!" and walked away.

I have often wondered what goes on in that little head.  I have often said that I wished she and I could have a conversation.  Sometimes though, I just know.  I don't always need words.