Our Summer in Review…
August 31, 2013
I know quite some time has passed since I last updated everyone on Gigi’s progress, but I guess I took a little summer vacation myself! Lucky for you all, I remember everything in detail and according to Dan I can take 40 minutes to summarize a twenty-minute show. ”Well, I like to add in the descriptive details,” I say.
School was out at the end of May and I was happy to have all four kids in one place at the same time. Jessie is not a fan of school so she was happy to be here and Beck was more than happy to have her here! Even in her dislike, she tends to make As and we never have disciplinary issues. I am glad to see that even though she doesn’t want to be there, she completes her work, is respectful and follows the rules. She even got several awards at the end of the year and was voted by her classmates to receive the last Principal’s Award of the year. Dan and I laughed when Gigi was better behaved than Beck and Sloan during the awards ceremony…that never happens! We were not sure how much adjustment time it would take for Gigi’s routine change, but it really did not seem to make a big difference…maybe because she is not a “five days a week, all day” attendee it makes the change less drastic. Plus she had missed long spans of time throughout the year for both surgeries and then her magnet injury.
By June, her head had completely healed, we had seen the audiologist for adjustments and she was back to hearing on both sides all the time. What a relief when that was over! Her therapy schedule continued as normal for the summer: Speech and Occupational Therapies on Wednesday mornings and Physical Therapy at “The Barn” on Friday mornings.
In June, Gigi started signing “potty” and she has the meaning behind the gesture figured out. If she signed it, that’s where we were going. For Gigi, nothing can be explained, only demonstrated. Then, as she would sit and happen to go, we made the sign again and smiled and clapped. When it happened that “number two” took place she got a balloon for a five-minute celebration (balloons are the strongest motivator to date that we have found for her). She doesn’t have a lot of control in this area of bodily function, but I am happy to report that I have only changed one “dirty” diaper on Gigi in months. I’ve got her number, as far as her number twos go, and we are making it every time. She has to sit for quite a while some times, up to thirty minutes even, but in orphanages, children aren’t so much potty trained as “sit here ’til it happens trained” and she doesn’t make a bit of a fuss about waiting for it. At first I was afraid that she would equate us to the caregivers that she had grown up with if we made her sit too long, but it really doesn’t upset her in the least and that eased my mind about her possibly having any ill feelings about the process. Because of her Cerebral Palsy and sensory sensitivities, muscle control doesn’t come easy and the sensations of the potty process are not her favorite things. She holds it as long as possible to keep from “dealing with the issue,” which as you can imagine creates more of an issue at times. Luckily she actually likes prune juice…straight up and at room temperature! Ack!
Gigi signing “potty” from the potty. She may hate me for this one day.
Also in June, Gigi started attempting with success about half of the time to put her own magnets back on if one falls off. She will attempt, but is not having the easiest time, placing the bigger part of the device around her ear if it completely comes off, but if only the circular magnet has flipped off…she’s got it covered. This is huge for Gigi! Her threshold before complete frustration and agitation at the fact that she can’t get something to work started of around .0001 second a year ago. These days, most of the time, she can work on something for a few seconds, maybe three to five, before getting mad and giving up and expecting you to do it for her. However, with her magnets and a few other things she will try for a full half-minute or so at times.
The last two weeks of June were very hard. Gigi regressed in several areas and started rehashing old behaviors that we thought were long gone. This isn’t the first time, but it definitely lasted longer than any of her other times of setback. She stopped signing some things that she was pretty good at before, she had times of not chewing her food, she flinched at me, she bit me a few times, she pinched, she hit her face with shoes, she picked at her thumbs until they bled, she rocked and rocked and rocked, and she even went back to slapping her hands down her face when she didn’t get her way and sucking her tongue while holding a ball to her face (this occupied most of her time when she first came home). Some new things came about, she started chewing on her hair for one. She stopped sleeping well and had several nights with just a few hours. In all honesty, it was miserable. And in the midst of it all, Jessie had a gymnastics performance, we attended a special Father’s Day event at a different church (Duck Dynasty’s Willie Robertson was speaking – as you can imagine, it was packed! Packed is not Gigi’s cup o’ tea, even on a good day.), she had her annual appointment with the pediatrician where she was due for some catch up vaccinations, and we had to say good-bye to the physical therapist that Gigi has seen for a year. Gigi of course couldn’t be told that T. and Dorian (the dog) would not be seeing her any more and so it was an uneventful goodbye on Gigi’s part. The fact that I can’t tell Gigi that some people may leave her life, but we will not, is perhaps harder on me than her. To me it is a harsh reminder of the life my girl has lived and I am left to wonder how many people have left her life one day and never returned without any explanation and if she expects that we will eventually do the same.
At the end of June, Dan had a three-week vacation! To start, we took a family trip “home” to West Virginia for ten days. All the kids rode pretty well on the eight-hour journey. Gigi did surprisingly well, even when we stopped at a roadside park that we are super excited to see has popped up along the way. It has a shelter and picnic tables and a grassy area the kids could run around on. We tied the dog off to a picnic table and had lunch from the cooler. The kids, and the dog, had a chance to run for a few minutes while we prepared the food and again while we cleaned up – it was perfect! We arrived at my sister’s house and Jessie and Beck, who remembered quite well even though it had been more than a year since our last visit, were out of the car and off to find their cousins. Gigi went with the flow and shocked us by not “going bananas” as we say. Nana (my mom) came over with pizza for dinner and Gigi even ate good sitting in a “big kid chair.” She was excited to see Nana and climbed up on her lap (which is permissible for grandparents and aunts and uncles these days) to explore her. We have pictures of Nana at home and she has seen her, my sister, brother-in-law, and her cousins several times so none of them are new to her. The whole trip went well. Gigi was surprisingly calm, which we did not expect to happen for one second at all, throughout the trip. She stayed calm (or at least “Gigi calm”) even when we would go over to Nana’s house for dinners and visits. We met my cousin and her two boys one day at a park with my sister and her kids, nine kids total, and I was surprised to actually get to sit and visit. Gigi was fairly calm there too and even explored the playground a little. Much to our surprise, she didn’t try too hard to climb her cousin M. or the boys…who were at this point fresh meat in Gigi’s eyes. It was a little bit rainy so we did have to spend some time under the shelter with Gigi and her ears to keep dry, but overall it went great! Throughout the week, Gigi spent a lot of time on Aunt C.’s from porch, where she was safe behind railing and a gate with nothing but a view of the woods and some rocking chairs. Gigi seemed to really benefit from the quiet, peaceful spot. We need one of those around here! It is on the list for new house.
On July fourth, we went into my hometown for the parade. Gigi immediately lost her marbles. She took off her ears, rocked, moaned and bruised both our sternum by rocking and slamming into us by the end of the festivities. Our guess is that the crowd and all the movement overwhelmed her. We just held her and when the parade came, she was throwing the candy back, she wanted nothing to do with being there. The other kids had a blast. We headed off to lunch after that and after we saw a forecast of rain for the night, we decided to attend a neighbor’s fireworks show instead of venturing back out for the town’s fireworks show. It was just a quick trip over with the kids in the back of a truck and was not too much of a to do. We took off Gigi’s ears, not knowing what to expect. She loved the fireworks. Feeling the boom made her smile and she actually watched the sky waiting for more. Nana had brought her a glow wand with a star on the end and she would hold it up to the sky with each set of fireworks. I am not sure what she was doing, but she was enjoying it. Jessie went through the night with her fingers in her ears (she has always been very sensitive to loud or unexpected sounds), Beck was being big with the other boys, eating his popcorn and drinking kool-aid, and Sloan had her own personal ear plugs, daddy’s hands, while she munched her popcorn and waved her glow wand from Nana.
On Saturday, July 6th, we loaded up and headed for my Grandma’s house where there was an annual family get together. The winding mountain road made Gigi sick, so we arrived and headed to the bathroom for a change of clothes – which I had brought for Sloan, so its a good thing they aren’t too far from the same size! I got to see my cousin’s new baby – not just any new baby, but maybe the cutest one ever, anywhere. Gigi also met her Great Grandma, two great aunts and a great uncle in the house while we waited to walk over to the festivities . Over the course of the visit several people met Gigi for the first time and she was WIRED. This was a Gigi playground…I can imgaine her thoughts- “so many people to climb and grab and they even smile at me!!” We completely expected this and tried to be prepared. We took a stroller, just in case, and we used it quite a bit. We had a little reminder of when Gigi first arrived and our skin hurt from the grabbing and pinching and pulling and climbing that comes in the package deal that is Gigi. The big kids – Jessie and Beck- ran around and played with the other kids and Sloan was back and forth and here and there and sweet and sassy and on Nana’s heals quite a bit. The kids went swimming in their Great Grandma’s pool and when we took Gigi to join them, it got really bonkers! She was too excited to be safe and when I took her out to calm down she was pinching and biting and just too much. I could have been more mindful about her state, but I will admit, the opportunity to have adult conversation sometimes completely overtakes me and my battles are not best fought. At the same time, it is also probably wise to not let her take my attention from everything else in life by misbehaving, or it just might become a habit – I am getting to know this daughter of mine well. The night ended with fireworks, which Gigi kept her ears on for almost the whole time, Jessie wished she could take her ears off for, Beck laughed through with nervous excitement and Sloan had her daddy’s hands cupped to her ears as she watched with delight. We spent one more day in the state that is not called “almost Heaven” for nothing and headed home on Monday. We decided to take the scenic route home so it took us about 10 hours to make it back, but it was nice and relaxed for the most part.
Gigi and Sloan looking at the New River Gorge Bridge.
Walking up the steps at the visitor’s center.
Dan still had over a week of vacation time, and because we were trying to get our house ready to list for sale, we decided to have Family Fun-cation. We went to a movie (Gigi lasted about half way through before the pinching and grabbing, rubbing her face on me, and finally the biting began. I took her out and had a quick scolding in sign that translates to “you sit” I demonstrated her inappropriate actions and told her “no” about each, told her we were “finished” with those and it was “time to sit.” We went back in and she did ok for a short time. Luckily the movie was almost over. On another day, we went to the Childrens’ Museum, which the kids always enjoy and we went to the neighborhood pool almost daily and did lots of playing on our deck. In between the fun, we were touching up paint, packing away our unnecessary stuff and hauling it to a storage unit, cleaning carpets and all the general labor associated with selling one’s house.
Here is Jessie getting geared up and climbing the rock wall at the Indianapolis Childrens’ Museum.
Beck and Gigi drawing with sidewalk chalk on the deck. Gigi initiated this (WOOHOO!) and Beck drew her a strawberry.
This girl loves the water!
When we got home, Gigi got to start her first sessions of aquatics therapy. This started off as a wild time, as most new things in Gigi’s life. It took her some time to get the hang of why were there. She loves the water. She is able to go under, breath out of her nose and for the most part not get choked up. She had this therapy for six weeks, and both the physical and occupational therapists that she worked with agreed that they thought it took half of the time for her to really calm down and get anything out of it, so they would like for her to do it again later in the fall when they have another session.
Gigi saw Dr. Escobar on July 17th. He was quite disappointed, as were we, to discover that she has gained no weight (not even an ounce) since April. He informed us that we would have to stop the medication for ADHD that she is currently on if she did not gain any in three months. ADHD medications act as an appetite suppressant, which for Gigi is not good. He is glad to see the progress she has made in a lot of areas, but not so glad in a few others. Sort of to our surprise, he added autism to her growing list of diagnoses. The diagnosis didn’t necessarily bring any new territory along with it, the symptoms are the same ones we have been dealing with all along. We will still continue with her treatment in the same manner in some areas, but we will begin one very large additional undertaking. Gigi will not be attending the public school this year, but will instead be attending the Behavior Analysis Center for Autism (BACA) that is located just a few minutes from our house (and we will not be moving far from here when we do move). This is not a school, but a treatment center where Gigi will have one on one therapy for six hours a day and two hours of supervised and directed social time. Her day will be 8:30 to 4:30 and I am more than a little nervous. The good news is that the center has a completely open door policy (for parents) and we can go in whenever we would like…within reason of course I’m sure. They don’t know what kind of offer they are extending to this particular mom. I have a little bit of a hard time handing over that much of my child’s day to someone else. This is an ABA therapy facility, which is Applied Behavior Analysis. This is in short behavior modification therapy. Now, occupational therapy is sensory based (kids do this because they have a sensory need and we need to find an appropriate way for them to satisfy their brains’ requests for information) and ABA therapy is behavior based (everything is a choice and sensory is not an overwhelming driver). This is a MAJOR gear switcher for me. I do feel that some of Gigi’s behaviors are a choice, but I think some are a sensory need. More so, I think that many of her behaviors are habits, Gigi is very habitual, that started as a sensory need. I will be operating at a high level of anxiety while I try to find the balance between these two things since a combination of the two theories does not exist (at least that I have found). I have requested to meet with her therapist before starting treatment. I do want the to understand that Gigi is coming from a very sensory deprived passed and that I personally believe that sensory does play a roll. I hope they will be sensitive to this and that they are open to hear about her past…at least what I know of it. I am also concerned that Gigi will form an attachment to her therapist that is stronger than the one she has to us. She will after all be with them for more of her day than she will be with us and like everything in life, we cannot explain to her why.
The whopper development for the summer is that Gigi is pointing!!! Not only is she just pointing, she is pointing to tell us what she wants!!! We can hold up two snack, and she will point to the one she wants and sometimes point into the bowl – “I want that, in here.” This is HUGE! Not only is it communication, but it takes some concentration and she is making a choice! She is very proud of herself for her new skill and I can ask her “where’s the shoe?” when it is laid out with other things she knows signs for and she can point to give her answer.
Gigi has also learned the sign for brushing teeth and will model it after I sign it and we are heading to the sink and she is also signing baby. She will hold and rock a baby doll for a short time as well as give it a bottle and feed it with a spoon. Baby dolls are one of her favorite objects to hit on her face, so this activity is usually short lived.
Gigi is not responding much to speech, but we can get her attention by clapping. This is a start and I still have high hopes for her hearing in the future. We have great news in this area, as far as adaptive tools goes, but it deserves a post of its own and is soon to come!
While at my sister’s house, we attempted to get a group picture of the Stevens kids…it didn’t quite work out, but here are some attempts: