Lonnie's Birthday

Hard to get my head around but our miracle child just turned 13!  Her birthday falls during winter break so it's hard to get kids here for a party - so we had cake with family and took Lonnie bowling.   She really enjoys bowling and is getting pretty good, but she gets really frustrated when she doesn't knock down all the pins.

Lonnie picked out a "How To Train Your Dragon" design for her cake - she really likes the movie.   She got the DVD for Christmas and watches it almost everyday.

Christmas

Christmas day was nice - we kept things kind of low key. Lonnie got mostly arts & crafts kits and some stuffed animals.

We went to my sister's to eat in the afternoon...lots of good food and good company.

Holidays

It seems like Thanksgiving & Christmas went by in a blur this year. We got a Christmas dress for Jenny.  She seemed to enjoy wearing it - prancing around.

Lonnie had some rough days, mostly stressing out when routines got changed.  Although she enjoyed her winter break, starting back to school was really tough.  She would wander around the classroom and refuse to do work - telling the teacher "it was scary".



Trip to White Sands National Monument

We drove to White Sands yesterday.   We were all impressed with the white sand.  

Of course Lonnie found a rain puddle to play in for as long as we could let her.    It was only a few inches deep, but she and a boy there with his family had a lot of fun running around and splashing each other.   When she got hot, she just sat down in it!   I'm glad I had a blanket in the car for her to sit on.
 
It is a 3 hour trip each way, so when it was time to head home, of course she did not want to leave.   All the way home, she was fussing at me about having to leave.   When she gets this single minded, I cannot say anything that will help.   There is no logic, just her wanting to stay.    By the time we got home, I just wanted to take a nap!

Lady's birthday party

We had a birthday party for one of our dogs, Lady.   There is a bakery in town that makes doggy treats, so I got doggy cupcakes, balloons and streamers. 

We invited the neighbor's dog, Mitzy - who is friendly with Lady.

The party did not last long, just till the dogs finished their treats - but Lonnie had been planning this for a couple of weeks and she was really happy it all turned out okay.

Some people might think this extravagant or silly, but Lonnie asks for so little that when something is obviously this important we try to make it happen.   She doesn't want a cell phone, iPod, or expensive video games.  She doesn't care about having designer jeans or fancy shoes - she just wants to love her dogs.

Miniature Golf Outing

We decided to try something different and took Lonnie to a miniature golf course.   I'm glad we did, but think we will stick with bowling.   Golf was a real exercise in frustration.  She would get upset when the ball did not go where she wanted it to - she wanted to make every hole with one shot.  She had trouble waiting her turn, she would try to start the next hole before the couple in front of us was finished.  She got upset when her dad hit his ball off the course.   By the time we were finished, she was really stressed.   Luckily they had a air hockey table there, so I got her to play a game with me.   She is very good at it and I made sure she won.   We are definitely going bowling next week!

Lonnie's new room

We decided several weeks ago that Lonnie needed a bigger bedroom.   She is getting older and has accumulated stuff, most of which she will not let go of.   At first, when I talked to her about moving her to a new room, she was not happy.  But when I told her Jenny would still be with her in her new room, and that she would still have her favorite comforter, she agreed.  She asked if we could paint it pink and I agreed.  We finally finished painting Lonnie's new bedroom and got her things moved in.   She and Jenny, the dog, seem very happy with the finished project.    Lonnie was very excited about painting the room her favorite color, pink,  but until we got her things moved in, she did not really understand what it was going to look like.   She painted the fan blades herself.   Since she had six colors and the fan only had five blades, I showed her how to paint one blade with two colors, and she did great.

Here's another video from the show

Although Lonnie gets distracted easily, I thought she did really well in the show.   She sang, stood up and sat down when she was supposed to.

She was so excited about being in this show.   She loves doing things with other children.

Summer is almost over

Hard to believe school starts in one week!   Lonnie has had a good summer.   She has been going swimming at the local pool a lot.   She still does not swim very well on the surface, but she is swimming very well underwater.   I got her a swim mask so she does not have to hold her nose and she loves it.

We took her and our two dogs camping in the mountains.  The first night was great, the second night we had lots of rain, thunder & lightening...Lonnie ended up snuggled up next to Dad until the storm was over.

Last week she went to music camp at our church where the kids made props and costumes for a show they put on last night.   It was called "Don't Rock The Ark",  a musical about Noah, the animals and the flood.   Lonnie was in the chorus and had a dog mask.   It was great!    I am going to try and post a short video of one of the songs - hope it works.   Although she continues to struggle with her social skills, Lonnie really enjoys being with other children and doing whatever they are doing.

Sunday drive

Lonnie had to do a presentation in front of her class on Monday, about Betsy Ross.   She got very agitated and did not want to do it.    I stood up with her and prompted her reading the report out loud.   The teacher and classmates were very supportive and gave her a round of applause when she was done.     Lonnie has been fortunate to have classmates that accept her as she is and are always willing to help her or just be a friend.   

We took a drive last Sunday to the top of Sandia Peak, where you can see for miles both east and west.  We took Jenny (the dog) along.   Lonnie did great, and so did Jenny.   After that we went up the road a little further to an old mining down called Madrid.   It is now an artsy-tourist town and popular biker destination.  Everything is kind of laid back there and Lonnie enjoyed climbing and exploring the old train engine on display there.   A long drive, but nice weather and a chance to relax.

One more week of school and Lonnie is out till mid-August.   She is counting the days.

I just finished reading a great book!

Thinking in Pictures (Expanded, Tie-in Edition): My Life with Autism (Vintage); Emergence: Labeled AutisticI recently purchased  several books and a video by Temple Grandin.  She is a woman with autism, who has had some amazing accomplishments.   Her first book, "Emergence" was a real eye opener for me.   It tells of her childhood through adolecence and gives the reader insight from the viewpoint of the autistic person.   Most books I have ever seen are written by experts in the field.   This is totally different!    Lonnie has speech, but still has difficulty expressing herself sometimes.   It can be like playing 20 questions getting information from her.  She tries, I can tell she is struggling to come up with the right words.   The more I read in this book, the more sense I was able to make out of some of Lonnie's behaviors.

 I now have more tools in my "arsenal" to help Lonnie all I can.   

I am looking forward to starting the next book, "Thinking In Pictures".

The HBO movie about her life is coming out in August on DVD - looking forward to seeing it.    I don't have HBO service, but my sister & brother-in-law saw it and said it was wonderful.

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.

Life With Lonnie (Raising An Autistic Child)

Where do I start? There is no real point in time that I can point to and say “This is when my child developed autism”. Thinking back, I can recall times when I wondered about some peculiar behavior she had developed or why she had stopped talking. Everything I read or anyone I talked with said basically the same thing…”every child develops at their own pace”. “Don’t worry, just love her and nurture her – she’s fine”. But she wasn’t fine, and the older she got the more frustrated she became. Try to imagine knowing inside yourself what you want to say or ask for, but not being able to make the words come out right. For Lonnie, it became screaming and pointing. I found myself crying at times because I could not understand what she was trying to tell me.

Then comes the self doubt and feelings of guilt. Did I talk with her enough? Did I spend enough time playing with her and loving her? What about the tumble she took when she was 2, did that cause the problem? Was it because I did not take enough folic acid when I first got pregnant (but didn’t know it until I was about 10 weeks along)? Was it because of my age when I conceived (47)? The bottom line is no one knows what causes autism, so there will never be a clear answer as to what brought it on with Lonnie. The best I can come up with is that the more time and energy I spend trying to find an answer to these questions, the less time and energy I have to help Lonnie live the best life she can.

The most important advice I can offer is this: If you, as a parent, see your child having developmental difficulties, don’t wait to seek help. Early intervention can make a tremendous difference with any developmental problem, especially any that fall within the Austism Spectrum Disorder classification.

With Lonnie, everyday is a learning experience. I want to share some things I have learned; maybe they can help someone else in meeting challenges. Hopefully others will have things to share also.


Things that work:

Praise all accomplishments: No matter how trivial they might seem to you, it probably was a big hurdle for the child. Even if the child is not able to express themselves externally – they are internalizing the accomplishment and the praise. It gives them more satisfaction and encouragement than is apparent.

Establishing routines: Knowing what comes next seems to have a calming effect. Asking questions is very difficult for most people with ASD. Having a routine eliminates the stress of trying to figure out how to ask a question.

Offer “A carrot on a stick”: When Lonnie is resistant to doing something (like homework), I offer a reward or a consequence. (If we get your homework finished in time, we can take the dog for a walk. If we don’t get the homework finished, no dog walk).

Watch for strengths & talents and encourage them: Everyone has them, but for people with ASD, it can be a key to opening pathways you might never have considered. Lonnie has a special relationship with animals and dogs in particular. I am amazed at how well our dogs follow her “instructions”. Even other people’s dogs will respond to her immediately. She wants to be a dog groomer or trainer, but of course wants it immediately. When I tried to explain to her that she would have to finish school, she did not understand how long that would be so I told her she would have to be taller than me. So now she has me measure her height every day. It doesn’t matter that the measurement is the same every day, it is just another routine that lets her relate to a future event.

Lonnie also loves to draw and paint. I gave her a stack of blank paper and lots of markers and I now have drawings taped up all over the house. It gives her great joy and gives me an opportunity to talk with her about the pictures. Some are just colors, others are of Lonnie and friends doing things like riding horses or taking a nap.

Things that Don’t Work:

Logic: You cannot reason with someone who does not understand the concept.

Abstract Concepts: Lonnie lives in the “here & now”. She has great difficulty with “when” something is going to take place. She can name all the days of the week and the months of the calendar, but she does not relate them with the passage of time.

The same is true of money – she knows the denominations and the names of the persons on the bills, but does not understand where money comes from or how to determine how much something costs. She likes to run my debit card through the reader and knows how to enter the PIN, but this is just a routine she has learned that takes place before you leave a store.

I have managed to teach Lonnie to look both ways before crossing a street, but I still have to remind her to do it. She does not understand the importance of it. I have explained the danger of possibly being hit by a car, but she does not grasp “possibility”. For her, either something “is” or it does not exist.

Asking generalized questions: If I ask Lonnie “How was school today” her response is “Fine”. If I ask “what did you do”, her response is “I don’t know”. But if I ask if she worked on math today I usually get a response “yes” that I can build on like “Did you do subtraction?”

If I ask “What do you want to do today?” I get “I don’t know”. If I ask “Do you want to go to the park?” I get “Yes, can we take Lady? (our dog)”.



Lonnie is almost 11 now, and fairly high functioning. She has a modified curriculum at school, but is in a regular classroom. She gets extra help from therapists and others trained to work with special needs children. She does have her own quirks and her own way of doing things. She presents challenges for us every day – but what a joy she is!