Jeep Ride

It's been a while. Instead of trying to catch up, I'm just going to jump right in with a good Keely story! 

So when I first tried moving Keely to a booster seat (the kind with a high back) she wouldn't stay in her seat. She would slip under the seatbelt and I ended up having to go back to the harness type. I remembering panicking thinking what if this was always a problem. What would I do if, at 12, I couldn't keep her in a seatbelt?? Would she start trying to open the doors while we were driving down the road? I drove myself crazy worrying about it. I remember looking up devices to block the release button on the seatbelt and other devices to keep bigger kids in their seats.

Things eventually, slowly got better. She has made tons of progress since those days. I've wanted a Jeep forever! I've waited and waited and then finally, I thought I'm just going to go buy one. So I did. Not really sure how Keely would do and feeling pretty guilty for buying something that was totally for me, I brought her home and immediately stripped her top off.  Keely lit up! She thought it was the coolest thing ever. I've heard her say "Jeep ride" more times than I can count. I'm sure I will be in trouble when I put the top on in colder weather! But, the point is she has come so far! Sometimes it's hard to tell, but times like these I realize this is huge! She can ride in the jeep in her regular booster seat (with no back), with the top off and windows down, and I can relax and not worry about her trying anything crazy in the backseat. So this is a picture of Keely enjoying her "Jeep ride".....good times!!

 

Never Giving Up

So for the majority of Justice's life, Keely has tried really hard to act like he doesn't exist. She has this great ability to totally ignore you if she really wants to, and she does this best with her sweet little (bigger) brother. But, as God always has the perfect plan, he gave Keely a very persistent little brother. He loves her so much and takes such good care of her. He will come get me when she is getting into something she shouldn't be, but he also comes and tells me when she is doing something good. He celebrates right along with us in her little successes, that are a huge deal in our life. He understands that she has autism and that she needs a little extra help. He is such a good helper and still, after being turned down numerous times, tries to play with her constantly. Lately, she has taken the time to acknowledge him and even play with him more and more. Yesterday, it was a thirty minute pillow fight, smashing, throwing playtime. Today, we were leaving for her doctor appointment in Texas and I asked him if he was going to give his sister a hug goodbye. Before he could, she leaned over and kissed him...all on her own! And after she gave him a kiss, she turned to me and said "give me a five" and stuck her hand out!

So we drove down to the doctor, and Keely doesn't have a lot of patience inside the office. She didn't want to stay in the room and she was just kind of doing her own thing. At one point she was sitting on my lap and the doctor had rolled over closer on his little stool, and it was like all of the sudden she kind of stopped and looked right at him and said "hi doctor!" Pretty dang good for a girl who at one point had lost all speech and according to some less than helpful doctors, might never talk again. I know my baby girl is in there! Damn you autism, WE WILL NOT GIVE UP!

Christmas Time

I have neglected this blog for quite a while, but after our Christmas, it is worthy of a post. The kids (and I) have been through quite a lot the past couple of years. We've experienced divorce, struggling, moving on, finding love, making our own new family, that is non-traditional but full of so much more love than we could have ever imagined. Most importantly, we have found Keely a new doctor, that hopefully can get to the bottom of her underlying medical conditions. It's so great with autism when you find a doctor that will treat the child's symptoms, not just chalk it up to autism. 

In the past, Keely has not been into the whole getting gifts and unwrapping them thing. So this year I decided not to wrap her gifts and see how it went. So I sat out all of her gifts, and Santa left some too, and she walked into the living room where she saw them. There were several new books, which are her favorite, and she picked up a new 'Goodnite Moon' book. She had the biggest smile on her face. She took it to the coffee table and sat it down. By this time I had squatted down in the floor next to the coffee table. She came running at me, still with her great big smile, and almost knocked me over with a huge hug. I am sure if she could communicate well, she would have said thank you, but instead I got a great big thank you hug, which was quite all right. I learned two things in this moment, one was she really understands how to be appreciative, and the other the great love my sister in law has for my children. When I looked up, she had tears in her eyes, as did I. It is sometimes hard to tell with Keely what she really understands, and she cannot communicate her feelings, so in those little moments when we can totally get what she is feeling, it is pure awesomeness. 

And now for the funniest thing she did, she hates having her fingernail and toenails cut so I usually enlist the help of someone else. This time, it was my mom. We were holding her down on the couch trying to cut her toenails on Christmas Eve. She was definately winning the battle. I finally finished, with some battle wounds, and she moves over to the edge of the couch and puts her little feet on the coffee table. She reaches down and starts messing with one of toes, that I obviously, in the battle, didn't do a good enough job on. It was like she was saying "ok, if you two crazies will get off of me now, I'll let you cut my dang nails!" And she let me cut all of her toenails on the foot that was bothering her, all the while giving me a look like I had lost my mind.

So, I'm learning. Sometimes, it's a slow process, and sometimes I mess up, but hopefully she can make it through without needing massive amounts of therapy. And hopefully, someday when she can talk, she will tell me all the things I could have done better so I can pass them on!

And brother had a great Christmas too. This was the first Christmas, he really got into all of it. Santa did let him down a little. He wanted a Dora and Diego Halloween DVD. Really?!?! For some reason, stores don't really stock a lot of Halloween DVD's at Christmas time like they should, which is totally setting the big guy in red up for failure. Thank goodness for mommy and the internet, this problem will get fixed soon enough. Overall though, it was the best Christmas so far!

Keely's Words

Things have been very busy lately, but today has been a great day...and it's not even over yet. I went into Keely's room today to get her up. As I laid down on her bed next to her she started feeling my pockets for my iPhone. She then said "I wanna play game." As I said what, surprised that she had said a whole sentence, she said, "now". Such a demanding little girl! But it was still very awesome to hear her putting words together and requesting what she wanted.

Later in the day, she was using her iPad and started spelling out the months of the year all by herself. She then spelled out telepone (one letter off) and took the iPad to the kitchen where the phone is and said, "Telephone Grammie." So we called Grammie. Keely was so excited and just smiling. She seems to be using a lot more words lately, hoping it continues!

Big Sister

It has been a rough week here. The kids have been sick and it totally wiped them out. They both slept more than I have ever seen them sleep. Now we are snowed in. Keely has wanted to go out in the snow all day today. Since both are still sick, no one is going out to play and neither of them are very happy about it.

Today, as we were lounging around the house being snowed in, the kids and I were laying on the couch. Keely will very rarely be anywhere near Justice, especially on the same couch. Today though was different, they both laid there for a while then they started playing around. Justice gave Keely kisses, hugs, and tickled her. She was loving every second of it and laughing the whole time. This was great, especially considering most days she tries to act like he doesn't even exist. As for Justice, he loved it! He wants her to play with him so bad and this was one of those times when it was like they were a typical brother and sister just playing together.

Keely's Jokes

Keely's play skills are coming along well. This week she was playing with her safari animals and as I was watching her play, she looked up at me and had some of the smaller ones and said "babies". A little bit later she had some animal and was making Pablo (little Backyardigans figurine) kiss the animal.

Tonight she was ornery as can be. She was trying to do things she knew she wasn't suppose to do, and she would wait until I turned my back and then try to get away with doing it. When I would catch her she would start giggling and take off running from me. One thing was moving the rug from the back door onto the coffee table and another was turning over a chair in the dining room. Both she knows she is not suppose to do and every time I turned around she would go for it and just giggle like crazy. It is awesome to see her little personality come through and try her little jokes with me.

It's a New Year!

It has been a week full of ups and downs to begin 2011. We started the week good. I was getting Keely dressed and she was eating a snack while I was putting her braces and shoes on. I left her shirt off since she was still eating. When she was done she put her snack bowl down and got her shirt and brought it to me in the other room and wanted me to help her put it on. Normally, she would have no interest in putting the shirt on, she would have just ran around without a shirt until I went and got it and chased her down to put it on.


Then the old yeast problem came back. I had taken her off the prescription yeast medicine a couple of months ago and thought we were doing pretty well considering we were trying to get off the prescription. But this week it got out of hand. I could tell she was in pain and her behavior was horrible. She was not sleeping well either. So I added back the diflucan for now, but am still hoping to get her completely off of it soon.


Even through all that she has made progress and done a few new things this week. This morning she was wanting to leave for school and had gone and got her coat to put on. I was still trying to get her to eat her breakfast so I held up her bowl of food up to her and said bacon. She held up her coat to me and gave me 'the look' and said coat in a little demanding voice. It was pretty dang cute. I love how she can amaze me everyday.


You and Me Against the World

Summer Time!

Well things have been crazy busy here. We had a tornado come through and took out many of the homes in our area. We were very fortunate and only had minor damage, but did lose most everything in our yard. We have been working on getting everything back in place so the kids can start enjoying the pool this summer.

We went back to see Keely's doctor in Texas yesterday. He was a little concerned that her low muscle tone is getting worse and believes that the heavy metals levels may be the cause. We did another trial of IV chelation. We have never done chelation on a regular basis because it is pretty much impossible to get a urine sample from her so we don't really know what she's pulling out. This time we collected a stool sample to send in to see what and how much of the heavy metals were pulled out. He was also concerned about her yeast levels so we are suppose to be trying to get a sample to send in to try to determine where that level is at.

I have been looking into homeopathy lately and have been hearing such good things. Most everyone I have talked to talks about how it has helped to heal the gut in their children. We really need this since we still have so many gut issues. I have narrowed it down to two places so hopefully soon we will make the decision on which place we want to go.

Keely's last day of school was today. They had outdoor activities planned for all morning long and invited the parents to come hang out for the day. When we got there she immediately ran to play on the playground equipment. As I was watching her play, they let the pre-K kids out to play on the playground as well. I see this little blond headed boy running over to her. As she grabbed his hand, I stood there in shock. She led him over to the slide and I heard her say "slide". He slid down the slide for her and went back up to where she was. They continued to play together and chase each other around and I caught them holding hands a few more times. I have to admit it brought tears to my eyes. Here's this typical little boy playing with her, and he couldn't really understand what she was wanting him to do and she couldn't really tell him what she wanted, but he was trying so hard to figure it out. He was helping her around and talking to her. I guess because I've always worried whether she will have friends, whether other kids will be nice to her or if they will pick on her because she cannot communicate very well, this was just so sweet and comforting to me. He didn't care that she couldn't carry on a conversation or that she had braces on her legs and was a little clumsy on the playground equipment, he just wanted to play with her. He could have chose to run around with all the boys, but he wanted to stay and play with her. I know not a huge deal to most, but I have never really seen Keely want to play with any other kids or really even want to be around any other kids. So when I saw her teacher I told her what I had saw, she quickly said "oh, you must be talking about Ryan." Apparently they have played together before on the playground and seem to like each other. I just wish I knew this little boys parents so I could tell them what a sweet, caring boy they are raising.

So summer is here! I am hoping to get some sort of homeschool set up going for the summer. Not sure what all that is going to entail, but I am going to give it a shot. She will have ESY starting the second week of June but it will only be for an hour or two three days a week so there will be plenty of time to fit in some homeschooling stuff between that and private therapies. So wish us luck, this is all new territory for this mother warrior!

The Good Times are Outweighing the Bad

It has been a long time since I have been able to sit down and update Keely's progress. She is keeping us so very busy. The biggest reason she is keeping us so busy is her constant progress. It might be slow, but as long as we keep moving forward it makes all the hard work worth it. Keely's speech continues to improve. She is now labeling many, many things. She is also starting to use many more words in an appropriate manner. She can request several things that she is wanting with one word requests. This is making life for all of us at home so much easier.

Keely is having some issues at school. She just seems bored and gets very irritable while there. A lot of days the teachers will say she had a good day, but I have seen the way she acts there and at private therapy and at home and there is a big difference. The school is really the only place she seems to have problems. I think one of the biggest issues I see there is that the things they have her doing are not challenging to her. She can master something in five minutes and then is ready to move onto something harder. I also think the school does not know what Keely is capable of because she has never really been challenged hard enough there. We are working with teachers and the doctor who diagnosed her and will hopefully come up with a plan where she can get more out of her time at school. She is also hyperlexic so I think that plays a big role in all of this. She loves words and loves to read, spell out words with letters, and just look at different words. She can already recognize so many words, and I'm sure this is not something that is typical with a three year old. So while at school she is suppose to be interested in things that would typically be in a three year old classroom, she is more interested in what you would find in a five or six year old classroom. But at the same time her speech is so delayed it is hard to fiqure all this out. And Keely is very good about only wanting to do what Keely wants to do. So it is kind of hard to fiqure what she really does know because when asked she usually will not answer, but later on you will see her do or say whatever you where trying to get her to do. Such a smart, complex little girl.

Keely has also had to get leg braces (AFO's). She has actually done really well with them considering how hard headed she is about most things (she gets it from her dad, I am sure). She had to get them to try to correct her hyperextending her knee back while standing. So......being the smart girl that she is, we were home for all of about five minutes when she fiqured out she could rock back and stand on her heels and still lock her knees back. She is also sometimes walking on her heels with her knees locked back too. To try to correct this they have added a small heel wedge to attempt to get her more forward off of her heels and also hoping that with time she will just get used to them and it be corrected on its own. Just another example of her not taking it easy on her momma!

As far as the biomedial route, we are still getting secretin infusions which seem to really boost her language. The first week or two after her infusion we really see her using more words and they are very clear. We have also recently started Enhansa. The Enhansa has really helped with her interactions with other people and she is much more affectionate with us. So many nights now she wants to just lay around on us and let us rub on her arms and legs and love on her. I just love every second of it. For so long she was not affection and it was almost like she did not even know we were in the room with her and now she is seeking us out for attention. I love it! We are still trying to work on some constipation issues with the Enhansa, and I am hoping we can work it all out because she seems to do so well on it except for that issue.

I am just so happy that she is getting better. Of course I wish the progress was faster (and easier of course) but it is not. It takes a lot of hard work, tons of money, and sacrifices that I never imagined I would have to make, but I have a daughter who is healthier than she has ever been. She smiles more than she has ever smiled, loves music, books, and learning. I have a son who loves to take care of sister and wants so bad for her to play with him, and while she is not quite there yet I believe that day is coming. I know he will be just as excited as us.

Progress is Sweet!

It was a long week last week. Keely has been sick off and on (mostly on) for about a month now. One day last week she woke up crying in the middle of the night. After much screaming I finally laid down in the floor beside her and begged her to show me what was wrong. She has never told us what was hurting her before, so I was completely shocked when she immediately started tapping on her right ear. She then put my hand on her right ear. The next day we took her to the doctor and she had an ear infection. This was such progress for us. I really didn't want to put her on antibiotics. I was afraid it would kick up the yeast. She has not taken any antibiotics since we started biomedical treatments, but they said it was bad enough that she needed them. I have upped her probiotics in hopes of keeping the yeast problem tamed.

Keely has been gluten free and casein free for over a year. She has never had any infraction since we started. I was very proud of this and we worked really hard to make sure we were very strict. Well the streak ended. I went to get her from school the other day and her teacher told me the speech therapist had given her vanilla wafers. So by that afternoon the diarrhea had started and by that night her stimming was getting bad. The stimming continued through the next day. I guess this just confirms why we need to be so strict with the diet. She has just been feeling so much better so it was sad to see her not feeling well. It reminded me of some time back just not as bad, thankfully.

And for the really good news....Today Keely and I went shopping for a few things. We went to Target and had been in there for a little bit when we needed to take a bathroom break. I lifted her out of the basket and let her walk. As we were walking, I ran into a lady that I used to work with. We started talking and I picked Keely up and we talked for several minutes and Keely was as good as can be. We went on to the bathroom and then she got back into the basket and we went to shop some more. We then ran into my friend again and Keely let us talk for about 30 minutes. She sat so patiently and at one point we were by a shelf that had several men's hats on it. She started trying on hats. It was so stinkin cute. And this is a REALLY big deal because.....it has been so long since I even attempted to carry on a lengthy conversation while she was with me. I gave that up a long time ago. She would get impatient, start yelling and then it would all be over...within a matter of seconds. But not now! My friend had not seen her since she was a baby but had heard that she had been having problems. And she commented several times about how she couldn't even tell by watching her that anything was wrong. And yes...I cried all the way home. We are on our way! Yes we have a long way to go and she isn't talking like she should be....but she can say words and she is using some words everyday. And we still have problems with transitions but these are all things that have gotten so much better so I know she will just keep improving.