Day #225

Maeve and I spent about 7 hours in the ER today. She just hasn't been acting like herself lately, she isn't eating as well as she should and my energizer bunny seems to have lost all her get-up-and-go. So I took her in to see if we could get some testing done to find out what we are dealing with. When they weighed her in triage I was so surprised to see that she has lost 6 pounds since she was weighed last! The doctor ordered blood work which came back fine, stool sample which came back inconclusive for the most part. The last sample that they took will take three days to get the results back and they are testing for giardia. Giardia is a parasite that you can get when you drink contaminated water, and if you remember a couple weeks back Maeve drank creek water when we had her out on a walk. So far there weren't any white cells in other fecal tests so they are thinking she just may have a virus but wanted to run the giardia test because she has had significant weight loss. She was given zofran for her nausea and by the time we left she had kept down some apple juice. She was tired and slept fairly well throughout the night. I hope my little girl gets better very very soon!

Day #224

This picture is of Josie's "All About Me" banner for her head start classroom. We were asked to make one so they can introduce her on her first day and hang it up. We weren't scheduled to start session until 11 this morning so we had the whole morning to take it easy. When Shelley arrived I ran out the door to the bank and pharmacy really quickly. Then we started session when I got back. At one o'clock our family advocate from ATCAA Head Start arrived to go over state enrollment paperwork, then Cyndi arrived to begin Josie's session, finally Cindy the special education teacher at Blue Bell Head Start arrived for her observation of Josie. We were finished at about 3 o'clock and spent the next few hours relaxing. Gerard came by later in the evening to watch the girls while I went to attend the parent support group meeting that was planned. Total bust! I had several texts from a couple in Martell, who got the information for the meeting through Valley Mountain Regional Center, asking me why I didn't hold the meeting in Jackson instead of Sonora, they were really looking forward to it but it was just too far to go. So I gave it half an hour wait and when no one arrived I went home. Oh well, you can offer these things but can't force anyone to go. Maybe an online group would be better?

Day #223

 

She is feeling better! YAY! Maeve started having a bit of the sniffles yesterday and woke up warm this morning. She was feverish on and off all day finally cooling down at about 8 o'clock this evening. I knew she was feeling better when she started giggling and ripping paper. Now she is trying to smother me with snotty kisses, ewwww joy!

I had photography this morning, then went to the store to pick up some things on my way home. When I arrived back at the apartment Shelley finished up session with Josie while I cuddled and medicated Maeve. I took Josie to visit her new classroom in Bluebell Headstart at 3 o'clock this afternoon, while Shelley stayed with Maeve, who ended up falling asleep. Josie enjoyed the classroom visit while no kids were there and both teacher Cindy and Susan were giving her their full attention. She wandered around and showed off how well she knew her alphabet, tried to take one of the fish out of its tank and generally enjoyed looking at everything in this new environment. She will fit right in and enjoy preschool, this I can say with confidence.

It has been a long day and now it is time to settle down for bed, nightie night :D

Day #222

 I think I have missed a day in here somewhere, but let's just say we didn't and go on from today okay?

This morning at 9a.m. we had the school psychologist and speech evaluator in for Maeve. They were doing assessments to get ready for her next IEP which is her triennial review. They spent an hour talking to me and trying to engage Maeve, then Shelley arrived at 10a.m. to start session and they stayed for a while to observe her. Meanwhile, I had to take Josie to see her pediatrician for her four year check up at 11:15a.m. She was such a big girl! She allowed them to weigh her and get her height, 39lbs. and 42 inches by the way. She allowed them to use the blood pressure cuff on her, that was 94/62. Examination went well, they took hemoglobin to check for anemia (12.8) and gave her two shots. The first shot was HepA booster, the second was the first half of her flu vaccine. Then it was grab a sticker and out the door to wait for our ride home. Once home we finished session and now I feel like I am ready for a nap!

Day #221

We had OT at 9 this morning for the girls with a new therapist, in a new room, and there were lots of new things to explore. It was a bit overwhelming for Maeve and I understand this is a step backward but she really needed to stim on the tanbark when we were waiting for Josie. Sometimes I just feel she needs to do these certain things to regulate herself; it's a two step forward one step back kind of thing. Overall it was a good experience for them.

Day #220

When we went to the genetic counseling appointment for Maeve it was recommended that I have the chromosomal microarray done to find out whether the abnormality that Maeve has was inherited or de novo (new in her). I went to my doctor and she ordered the test and the result came back normal. I do not think her father will ever get it done but maybe he doesn't have to. If one parent does not have an abnormality is that enough to conclude de novo? I will find out when we go back to see the geneticist in November.

Day #219

Another epic line up for Josie, she moves quickly and quietly, I did not even realize she was doing this until after it was finished. She likes doing this kind of thing but it is not an obsession. If I were to knock a few of them over or take one from the middle it would not be meltdown material. You know it has been a lazy day when this is the highlight, and I am perfectly okay with that :D

Day #218

Happy 30th Birthday to ME! 

Today has been eventful to say the least: started out by going grocery shopping at 9am, then session started at 11am, squeezed in a couple batches of towels (see previous post) by 1pm Ginger picked me up for our 1:30pm IEP meeting for Josie.

Josie's IEP went well, she will be starting preschool on October 2nd at Bluebell Headstart. Slowly introducing her to a 5 day schedule by starting with 2 days first week, 3 days second week and so on. She is advanced and that is why we decided on an inclusive preschool rather then the special preschool. We were told and I quote "Josie would be the high flier in the special class" and we don't want to bring her down to the lowest functioning child's level. So hopefully in Bluebell she will start imitating the neurotypical kids behaviors and just blossom.

After all that at I was picked up at about 6:30pm to meet some friends (Ginger, Tim, Cyndi and Glenn) at The Mill inside the casino then music at the Willow Creek Lounge afterward. I got home well before I turned back into a pumpkin. Oh, and somewhere in all of this I was bitten by a meat bee, never heard of such a critter! I was bitten not stung and it burned like Hades.

Day #217

This is what happens when mama turns her back for 30 seconds while the girls are having water play on the deck. Not sure if they worked together or if super strong Maeve dragged the bin in herself, but it was dumped all over the linoleum. I know I needed to mop girls, but not like this!

I am getting concerned about Maeve's behavior, she seems to have a hair trigger lately. One second happy as can be, the next second trying to attack the nearest person to her. I am hoping to have a joint meeting/appointment in November. We are supposed to see the geneticist, but since our neurologist is in the same building I am hoping she can attend that appointment as well. Keeping my fingers crossed that it works out, we need to get some help for my baby girl.

Day #216

Shelley, Cyndi, the girls and I took a walk down to the creek today. The girls really seemed to enjoy themselves. Both were wet and muddy by the time we were ready to get going. We probably would have stayed to the end of session, but Maeve decided to try drinking the water, gross yucky! Maeve needed creek time today, she has been very agitated and this seemed to have a calming affect on her. We noticed a difference between the girls as we watched them: Josie was sitting all tucked up and not getting too wet or dirty while Maeve was muddy clear up to her knees, stimming leaves and mud. These two are truly polar opposites in their approach to life :D

Day #215

My girls are so talented, look how Maeve can do fish lips like a pro and Josie is demonstrating a taco tongue, I give them each a score of 9.9! These were just too cute not to share!

I had photography class early this morning. The girls, thanks to Shelley and Cyndi, had session. I finished up some homework after that. A man came by at about 3 o'clock from Habitat for Humanity, he just needed another credit report form filled out. He told me not to get too excited about his visit, but he patted my shoulder and said "you need a bigger place." Since then it feels like I have been on the telephone. The school psychologist called to set up an appointment for herself along with a speech evaluation for Maeve next week. The school nurses secretary called to update medical information and after 20 minutes she thought she had all she needed. Now, I need a nap! :D

Day #214

Josie is quite the independent girl, look at her brushing her own hair after bath tonight! She picked up her brush and decided to do this completely on her own, no prompting necessary. So proud! I could tell she was very proud of herself as well :D

Day #213

Controlled chaos, I like that term, describes our life perfectly wouldn't you say?! Anyways, I allowed the girls some T.V. time earlier and Josie was really excited about this program, it is called the Notekins on the Baby First channel and teaches about the musical scale. Quality programming for little ones, all about baby development and all programs are educational. They even have special evening programs that are just soothing music and comforting images, almost could be equated to stim television. I figure if I am going to put the T.V. on for them it might as well be beneficial.

Day #212

This Saturday has just been one of those lazy, hardly want to move, would rather kick back in the toy box kind of days. Maeve's digestive issue is much better and her appetite is increasing, so I think we are on the better side of this. Took the girls for an amble around the cemetery so I could finish the photography project I have been working on. Other than that there has not been much of interest to report.

Day #211

I think Maeve has grown tired of summer and is ready for winter, wouldn't you say so too?! It is 95F outside, granted we have the air conditioner on but it's not that cold. She went into their closet and brought out a pair of Josie's blanket sleeper pajamas insisting I put them on her. Next she brought me her coat and wanted to wear that. Then she brought me her slippers and held her feet up to have me put them on for her. Now she is perfectly content to wander around the house dressed like there is a blizzard going on.

Day #210

Maeve amazes me, look what she did with her little toy car. She took her graham cracker and broke it into a hundred little pieces and put them all into the car. Then she was pushing the car around like her cracker was taking a ride. This kept her entertained for quite a while today, I would guess at least fifteen to twenty minutes. Both of the girls truly amaze me when I see the items they choose to play with.They sure keep life interesting :D

Day #209

Today was just an odd day all around, maybe it is just me but it felt thrown off for some reason. To begin with the girls and I slept in until 9:40a.m.! Can you believe it? I can't! I haven't slept that late in years. We had therapy at a later time also, 1-4:30p.m. After that I took the girls grocery shopping and we weren't back home until about 6p.m. Next it was dinner then bath, clean up and bedtime in the blink of an eye. The day just flew by! I was able to snag this picture of Josie playing with all her little friends. She was being a bit picky about who could play today, only her dinosaurs were invited. As you see she is standing her tiny reptilian friends up in a line. Things need to slow down just a bit, our days seem to be moving too fast lately!

Day #208

Josie did NOT want to wake up this morning. She was restless during the night and got up when I did at about 6:15a.m. having a BM. I think we are passing around a teensy weensy stomach bug, nothing much, I will spare you the details. After I changed her I put her on the couch with her pillow and blanket, she promptly fell back asleep. I had to go to class, so Shelley came to watch the girls at 7:30a.m. I was told Josie did not wake up until 10a.m.! She was acting fine, had a drink, worked well for Cyndi and when I got home she was perky. She just needed to sleep in, and some mornings you have to let her or you will have a cranky little one on your hands.

Day #207

Blanket fort! Shelley called me into the room today during session and said "bring your camera!" She and Maeve had constructed a chair and blanket fort which Maeve immediately pulled me into. I love this picture and how both of our legs are sticking out :D

It is hard to tell sometimes whether I am being judged, sympathized with or admired. I took the girls into the community pharmacy this afternoon and all eyes were on us as soon as we entered the room. I am not even kidding. I was holding a very unhappy Maeve who was upset being in a new place that looked an awful lot like her pediatrician's office, and I had Josie on her tether who was getting upset because Maeve was. I was tending to the girls, trying to calm them down when I realized literally 5 people were staring at us. I felt like a circus sideshow! I ignored them the best I could but couldn't wait to get out of there. Maybe I am being judgmental, maybe they all had helpful thoughts on their minds, I don't know. Sometimes I wish people would just speak up or look the other way.

Day #206

Chewy tubes are indispensable items to have in your autism meltdown prevention kit. We have all become very nimble and accurate with them. Whipping them out and shoving them into the girls mouths to bite down on and alleviate some tension. It is either that or they tend to bite themselves or the nearest person to them. As you see chewy tubes come in all sizes, shapes, and textures. The brown one is even chocolate scented! Not too expensive and worth every penny if you have a little one that is a chewer or a biter. A must have item in your arsenal!

Day #205

Isn't that the sweetest little dirt streaked face you have ever seen?! I captured Maeve's far off look when we were on our walk this evening. I wonder what she is thinking? Her eyelashes look a mile long in this photo and I love the muted colors thrown by the sunset sky. What a beautifully surreal picture of my little angel. This is one of those lucky shots I get with my cell phone when all I expect is blur :D

Day #204

Josie doesn't need cars for the road rug, she lets her fingers walk the streets. I think this is so cute, her little people fingers wandering the town. She has such a great imagination :D

Day #203

Josie keeps proving me wrong. I say all the time how the girls never nap, they don't need naps anymore, etc. Here is Josie proving those statements false yet again. She falls asleep in such odd positions doesn't she?! Tonight I may pay for it but I will let her sleep, she obviously needs it. Even though it is 4 o'clock and she will be awake until midnight or later!

Day #202

Keep your fingers crossed for us! I turned in our application for a Habitat for Humanity house this evening. I won't know anything until at least October 17th. Talk about sitting on pins and needles! There was a preliminary interview just to see if the packet was complete and all evidence provided. I actually gave them too much information, that's better than not enough. While I was waiting for my turn I recognized a lady there and it turns out we met once before at Twain Harte park a while back. She is raising her two grandchildren and her grandson has high-functioning autism. Also, one of the men interviewing me has a 14 year old grandson with autism. The more people I mix and mingle with the more I see how prevalent autism is. Everybody seems to know somebody affected with this disorder. That's a bit alarming, isn't it?!

I thought I would use the logo of Habitat for Humanity for the photo of the day, kind of fitting I thought. It looks like me with my two girlies under the roof of a new house...wishful thinking!

Day #201

Who knew? I sure didn't! The more I research 17p13.3 Duplication Syndrome, the chromosomal abnormality that Maeve has, the more I see the characteristics. Some are minute but they are there nonetheless.

Some features that may exist with this particular syndrome affecting 17p13.3 and the YWHAE gene include: Subtle, unique physical features. However, it may be difficult for someone other than a medical geneticist to recognize them. These features include a prominent forehead, thick eyebrows that may merge in the center (synophrys), full nose tip with a long columella (cartilage between the nostrils), thin upper lip and pointed chin. There may also be larger than average body weight and length/height with minor hand or foot abnormalities. These features may not cause medical problems but may lead health care providers and parents to suspect that the child has an underlying medical condition.

Of those people reported with 17p13.3 duplication syndrome, there is some degree of developmental delay or behavioral problems. These behavioral problems may include autism spectrum disorder or attention deficit hyperactivity disorder.

Not to pick Maeve apart but as her mother I see these particular characteristics: slightly, I mean fractionally, more pronounced forehead then "normal" but not much.  She does have a full nose tip and a bit of a pointy chin, thinnish upper lip and she has always been above average in height. She also has foot abnormalities, that I just took as crooked toes, but it is considered a "sandal gap" or larger than normal gap between her first and second toes, as you see in the picture. Oh, also, we all know she has autism.

So there you go, knowledge can empower, it can also be a "damn" kind of moment! No matter what tests are showing she has, she will ALWAYS be my baby, my love, and my world. The same goes for my Jojo too!

Day #200

Not sure why it struck me to make this particular image the picture for the day but, hey, this whole blog is about my life being a single mom of autism and this is a good case in point. This is what my shower looks like at this very moment, I didn't have enough quarters to dry only to wash a batch of laundry so this is how I am drying them. I would guess a lot of people wouldn't have even washed them let alone hang everything to dry but I was raised differently. I am lucky to have grown up with such a strong mother who taught me ingenious survival skills. I am a DIY-I-will-fix-it-myself-do-it-on-my-own kind of person who has a hard time letting others help, but I have learned that I cannot do everything all the time. I am slowly getting the idea that it is okay to do things for myself. It has taken me a while to realize I can put off the girls demands long enough to pee first. That I can sit down and eat a meal even though the house is in shambles. That I can leave the sink full of dirty dishes to another time if I would rather spend time cuddling with the girls or doing homework instead. Limited time and resources makes a person crafty in the ways of scheduling their time and I must say I am becoming a master. That makes me rigid in a way I guess, I don't cope well with spontaneity! If it isn't on my calendar or in the routine it most likely will have to be penciled in for another day. I automatically erect a "NO" wall when it comes to pop up plans, but I am learning to see the possibility in spontaneity at the same time as I am building a support system. So my final thought is: a single mother of autism, or typically developing children for that matter, are only as good as their support system. Without supportive friends and/or family, or trusted individuals for respite life would be unbearable. No matter how much you love your children, and my girls are my world, you always need "ME" time, I am speaking to myself here as well! :D

Day #199

 While I was hanging laundry this afternoon Maeve decided to make her own sand to play with out of crackers, quite the fun she was having. Just goes to show that if she gets too quiet or happy about something it is usually going to entail a mess for mama to clean up. What you see here is only part of it, I would say she crushed nearly half a package of crackers in total.

Day #198

I may have to make the book shelf disappear for a while if Maeve doesn't stop making nests out of all the books. I want her to have access to the books but in an appropriate manner, not like this.

Sierra watched the girls for me for a little while this morning so I could go to the hospital lab for blood work and a urinalysis. Just routine blood work from my new doctor and the special Chromosomal Micro-array the geneticist wanted me to get done. Don't let anyone tell you that it is not a long walk! I was pooped by the time I got home, didn't help that I also had to fast for the blood draw. After that I took the girls to the store for some much needed grocery shopping. I decided to try it without the harnesses and they both walked with me holding my hands perfectly! I am so proud of my girls! After we got home I finished up the chores I needed to, mopped and vacuumed the dreaded floors! Then it was time to relax which felt extremely stellar. The rest of the evening was low key and we were all in bed early :D

Day #197

EEEEEK! Look what took over the crib in the doll house! Josie was calling them her "wonder pets" and tucking them in like little babies. She was also trying to link their hands and have them play "Ring Around the Rosie". I love how she gets attached to the most unusual toys.

I visited a potential preschool for Josie this morning and absolutely loved teacher Susan! I was apprehensive at first due to a previously unsatisfactory  experience at the same school but I always allow for a second impression even if the first is a total bomb. I like the fact that the class size is small, it will be breakfast, circle time, indoor and outdoor free play, lunch, circle and bus home. There will be OT and Speech services provided as well as a short time of one-on-one ABA type teaching with the special ed instructor. Josie should fit right in and my hope is that she starts mimicking the typically developing students behaviors. Now we wait for her IEP...

Tonight was supposed to be the second meeting of our parent support group but was not that successful. Beth and I were the only ones that showed up! We had a good chat fest and then went to Safeway after waiting an hour for anyone else. I think I need to advertise and network more to get more parents involved. You would think with the limited resources up here that more parents would want this avenue of support, I don't know, I will keep trying!