Christmas morning

Christmas morning got off to an early start this year - Lonnie got up at 5:10am. She was so excited to not only open her presents, but also to hand Bobby and I our presents and watch to see what we both got. Although she is still not grasping the real meaning of Christmas, she listens to my explanations and I can tell she is sorting it all out in her mind. I have faith that she will eventually understand and appreciate the wonderful story of Christmas.

We lost my aunt to cancer yesterday. It was expected, I'm glad she was able to have one last Christmas with the family, especially her 2 grandsons. I told Lonnie last night that Aunt Jan had died, not knowing if she would really comprehend or not. She looked at me very surprised, her eyes wide, and said, "she died?". I explained that she had been very sick and it was time for her to go be in heaven with Grammy and Kiersten. The permanence of death has been very difficult for Lonnie to grasp, but as she approaches her 12th birthday, I can see that she is beginning to understand.

As always, each day holds it's own miracles.

Christmas 2009

Lonnie is so excited about Christmas this year. This is the first year she has really been curious about what is in the presents. Before now, she has just been excited about the packages, now she is looking forward to what's inside! It has taken awhile to get to this point. When she was 4 she got so upset about the packages being opened (she wanted them to stay under the tree), that I had to take them in the bedroom, open them, and bring her toys back out to her.


We made sugar cookies for the family Thanksgiving gathering that were such a hit, we have been asked to make some again for Christmas. I guess we will get started on them tonight.

Progress

Today Lonnie went to school without the wheelchair! She is walking slow and her legs still do not straighten completely, but she really wanted to try today on her feet. I hope all goes well, I will know when I pick her up this afternoon.

Medical issues

Lonnie started having difficulty with her right leg on August 28th. She could not straighten it out completely and I could see bruising on both of her knees. It did not improve over Labor Day weekend, so Tuesday we took her to Urgent Care. The doctor there took x-rays which showed no broken bones and she thought she might have done some tendon damage. We wrapped her knee with an Ace bandage and gave her Ibuprofen for 3 days. By then, the bruising was on both legs and knees and she could not straighten either of her knees. We took her to UNM Childrens Hospital where they diagnosed her with a condition called HSP. Basically an inflammation of the blood vessels in her legs. We have been taking her to school in a wheelchair and she is on Ibuprofen 3 times a day. Finally, after more than a month, she can almost straighten her legs completely. Her walking is still unsteady, but she is trying very hard to get well....I promised to take her bowling as soon as she is able.

The stress of dealing with this is showing in her behavior at school. She gets frustrated easily and yells at teachers and other children when they try to help her. I am trying to put the brakes on this before it gets more out-of-hand. I told her if she doesn't stop yelling at others, I won't be able to take her bowling.

Learning to swim

Lonnie and her dad have been going to the swimming pool near our house nearly every day since we got back from California. Boy is she tanned! One of the big hurdles in Lonnie learning how to swim is that she refused to put her face in the water. I finally got her to wear swim goggles, but she still would not put her face in the water. Well finally last week she started putting her face in the water. She kept watching other kids in the pool going under water to retrieve toys and I guess she wanted in on the fun. Funny how all the coaxing and urging we did was to no avail. Seeing other children doing it was the key. Of course she immediately decided that was all there was to swimming and in a moment of inattention on our part, she got in line to jump off the diving board in the deep end of the pool!
When I made her come back to the shallow end, she was very upset with me. No matter how I tried, I could not make her understand the danger. I finally had to just put it in very concrete terms. I told her that when she could jump off in the 5 foot depth and swim out to me (about 10 feet) without touching the bottom, then she could try the diving board, but only if I or her dad was there with her. She was not happy, but accepted the rule. She is now working on swimming because she really wants to jump off the diving board!

Lonnie is a great joy in my life, but I sometimes despair that she will ever be able to understand "danger" and personal safety. Lonnie is very loving and a true innocent. I hope as she grows she will be able to learn to start looking out for herself. We won't always be here to protect her and I worry about someone taking advantage of her or hurting her.

Meeting Rachel

Lonnie and I drove to California to meet her new cousin, Rachel. My sister and brother-in-law just adopted Rachel from India! (see http:bringingrachelhome.blogspot.com/ )

We had a great visit and the girls hit it off immediately. Lonnie is usually shy meeting new kids, but these two had an immediate connection. Chronologically they are about 7 years apart in age, but it made no difference to them. They were doing everything together the whole time we were there.

Lonnie even helped gather eggs from the chickens! The last time she saw chickens, she would not get within 20 feet of them, much less gather the eggs. But when Rachel went in the enclosure, she just trooped right in with her. What an experience for all of us! I hope we can see them again soon.

I found the shoes!

Well, I found the shoes to go with the Minnie Mouse outfit & they arrived Saturday. Since Lonnie was home and saw the mailman deliver the package - he got all the credit!! She was very excited to get the shoes, but all weekend talked about how "Max the mailman" brought her yellow shoes. This is another typical aspect of autism - they percieve things very much in the "here & now" - the future is hard to comprehend. And because "Max" is the one who brought the shoes - he is responsible for getting them for her. If I say "no, Mom bought the shoes" she will repeat that, but then turn around and talk about how Max got the shoes for her. Ah well, at least she is happy now - her outfit is complete.

Minnie Mouse costume arrived!

Lonnie's Minnie Mouse costume arrived yesterday. I had the package mailed to my office since I am not home during the day. Before I went in the house, I put the "ears" on. Lonnie was busy with a video game when I walked in. She turned around to say hi, saw the ears and gasped. She immediately switched off the game and came running to me. She was so excited, she had to try the dress on right there. She wore it the rest of the evening until bath time. She insisted that while she was wearing it, she was no longer Lonnie, but "Miss Minnie".

I took some photos and this one came out the best. She wanted to wear it to school to show her friends, but I explained that she could not. I am printing out a copy of this picture for her to take and show the other children.

I have not found the shoes in her size yet, but will keep looking as she will not let the matter rest until I do. It's not that she is demanding, it's just that the Minnie doll she has, has the yellow shoes w/red bows, so she doesn't see the outfit as being complete without them. This is the "obsessive" behavior aspect of autism.

I know some people will see this purchase as an unnecessary extravagance, but really, Lonnie asks for so little. She is not caught up in the frantic acquisition of video games, clothes, etc. that most kids are these days. This outfit is the most important thing in the world to her right now, and that won't change for a long time.

Lonnie is going to be in a school production of Willy Wonka & the Chocolate Factory. I'm really looking forward to seeing it. She has only told me about one number, but she is so excited because she gets to be the "sun" while other children dance around her. I hope to get some good pictures.

I was reading a blog posted by another mother of an autistic child and she spoke of the difficulties of getting him through the night as he frequently wakes up and she has to comfort him until he goes back to sleep. Although he is a toddler of about 3 or 4, his bed is a crib with some kind of tent enclosure that is zipped closed to contain him. I was kind of shocked at this. I think if I woke up in the middle of the night all alone in an enclosure like that, it might upset me. She then spoke of getting to go back to bed with her husband. I guess to some, the sanctity of the marriage bed is inviolate, but to me, the needs of the child should have precedence.

I understand the need to protect the child from getting up and wandering around at night, but when this became a problem with Lonnie, we simply put her to sleep in our bed. When we did, she stopped getting up at night. She just needed that security of having someone close by.

It took a long time, but my husband and I were content to let Lonnie sleep with us until she was ready to sleep in her own bed. When she woke up in the night, all she had to do was reach over and touch me, and go back to sleep...much less stressful on everyone. She now sleeps happily in her own bed, with a nightlight on, knowing we are just across the hall. She still wakes up sometimes at night, but is not distressed.

Oh, by the way, I finally found the Minnie Mouse costume in Lonnie's size and have ordered it. I know it's a long way till Halloween, but at least she will have the dress in her closet.

Surprise

I realized recently that I had been fostering a false sense of security because Lonnie had never shown any interest in the internet. So much so that our computer is set up for automatic login when you click on the Internet icon. I walked in the room a couple of days ago to find Lonnie not only on the internet, she was on EBay looking for a Minnie Mouse costume for next Halloween! I had done some preliminary searching there and apparently she had been watching me.

This is another typical aspect of autism; that one cannot necessarily tell when an autistic person is aware or paying attention to their surroundings.

Well, we made it through the holidays fairly well this year. This was the first year that Lonnie had expressed a desire for particular items for Christmas. She was constantly repeating the list to me and asking me to repeat it back to her so I would not forget. I finally had the idea of writing the items on a sticky note and putting it on the refrigerator where she could see it and that seemed to settle her down a bit. I told her clearly that she might not get all the item on her list, and sure enough a couple of things proved to be too expensive and or unavailable. But she got plenty of extras that were not on the list and all in all seemed content.

Lonnie was born on New Year's Day, so with her birthday following only a week later, she received more than enough.

Because Lonnie has a tendancy to obsess on something in particular, I always strive to make sure she has a variety of different things to interest and challenge her. Sometimes she goes from one activity to another every 15 minutes or so, but it helps keep her anxiety levels down.

Lonnie continues to make good progress in her social skills and communications. Math is her worst subject in school - she has a lot of trouble with abstract concepts. Mostly she just memorizes for now, and that's okay. I have confidence that it will fall into place for her eventually.

Her music class is rehearsing for a presentation of a musical version of Willie Wonka and the Chocolate Factory and in one number they are rehearsing, Lonnie is the Sun. She is so excited about this part - she talks about it alot. I hope to get some pictures at the show.