Dirty Shoes

Join us with our journey through Autism Spectrum Disorder

October 30, 2013 *part 2* October 31, 2013

Ok, I’m back. I didn’t make it to class due to this wonderful virus going around that our family seems to have gotten (except Selena, she is our robot child who rarely gets ill) and I just needed to rest. We had a wonderful dinner and a great conversation at dinner. We always make it a no cell phone zone and only during special times do we allow her and us to watch a family movie while we are eating dinner. Dinner is a time for communication, togetherness and our time together to catch up with our day. Although getting Selena to talk about her day is about as easy as asking a chimpanzee to type a novel, we can get a few things from her. I do miss her teacher writing everything she does during the day, it feels like we are just in the dark now with her school life. She is doing really well in her new class and I’m excited that she has been paired with her peers. Selena gets along with her classmates and there has only been a few incidents, most of them during the end of the week and during her medication changes. Her aggression has been pushed back a bit and I thank the medication for the emotional stability she has gained. I am hoping that as she gets older, her ability to understand her emotions will be more of a winner than the medication alone. As of right now, when we ask her how she is feeling, she rarely has a correct answer for us or she just tells us that her heart starts racing. A key sign of her anxiety.

Sorry if my writing has been a bit jumbled lately, I have been required to write a ton of structured essays so I guess this is my free for all escape from all of that nonsense! Hah. Bear with me, I am just happy to get some thoughts out, even if they are ranting.

Back to Selena. Her anxiety is pretty uncontrollable and it renders her just about useless and unable to function. Example: The bus schedule in the morning. As we all are aware, buses are rarely at your home or stop at the same time everyday, there are way to many variables to make it a consistent time. Well, this doesn’t work for Selena…at all. If it comes early and she isn’t 300% she freaks out. If she is standing at the door, with her backpack on, ready to go and we aren’t pretty much right next to her, she starts screaming for us and starts her arching jump splits. Going to be great if she wants to be a cheerleader! Hah! If the bus comes early, like it did the other day, and she is brushing her teeth; she immediately freezes, starts screaming, staring at herself in the mirror and is unable to continue and get finished. I have to physically turn her and finish her up, while she is screaming and help her get out the door. She BOLTS to the bus, at times she has hit her shin on the bottom step, screams at the bus aide and runs to her seat. I feel so bad because there is not a single thing that I can do for her. I am trying to allow her to be more independent, but that means we move on her time, not my time. So some days it just takes longer for her to get moving.

In the mornings, I don’t have to carry her, she will walk, but she walks with assistance. I stand behind her and help lead her because her balance is super off in the morning time. She has begun to refuse sitting up most mornings so I need to turn her legs off of the bed and sit her up to get her moving. Ah memories of being a CNA. Some mornings, she will get herself up, ready and come out dressed, but that is few and far between! Boy are we thankful for those days though!!! Every small improvement should be celebrated. Especially with high fives and awesome hugs! We have her eat breakfast now at home and it’s working out pretty well. In her new class, she doesn’t get any special treatment in the cafeteria in the morning anymore. They have aides that walk around and hurry them to finish up quickly and get to class. You can’t do that with Selena. So imagine how her days would go. Freak out over the bus, freak out at breakfast and then try to do her studies and be productive during the day when her morning just started out so crappy and emotionally draining. I am glad that we are able to make these subtle changes so that hopefully her emotional well being can become more stable.

My pregnancy is starting to become real for her and I believe it’s mostly because my belly is finally starting to show. She likes to come up and rub my belly, talk to the baby and ask questions about the baby. She picked out a toy for the baby when she was with Mahja and helped me pick out some cute neutral newborn outfits. Once we know what we are having, I want her to pick the “take home” hospital outfit. We are all so excited. I think she is torn on what she wants. She talks about wanting a boy so she’ll have a prince to play with, but also she is excited for a girl too. She has been playing with her baby dolls and coming up to me talking about how the baby will be that big and how she will take care of it. Selena does not understand some certain concepts with what babies know and what they just don’t understand. I am a little bit worried that she will not be so forgiving with the baby and may lash out just because she doesn’t know any better. I hope that with some cute stories, lots of talks and time with the both of them, that she will be the biggest, most awesome sister one could ask for. This will definitely be interesting.

Girl Scouts has been interesting. We have been having fun, doing new things and have been getting to know each other pretty well. Our girls are becoming pretty good friends and now we are going to be trick or treating tomorrow together, which will be awesome! There are at times with meetings, where she will not participate or even be able to sit in the same room together with the other girls. At times she just wants to scream and hide, and we let her and I go to her after a few minutes and tell her that we all want her to join us, that I will be right beside her and that she won’t be alone. At times this works, but not always. We just had our Halloween Party and I am now getting ready for our Christmas party. Yes, yes, yes, I am aware that it is not that close, however with our busy schedules, I need to start planning now so I don’t have to worry about it along with everything else that comes along with Christmas! We are going to do a parade this year! Super stoked!! I went through and wrote down the key things I would like to do for each badge and now have a book in the works for the girls to take home, write in, have their parents sign off on, for each step of the badge and for what we will be doing together so that we can get some things accomplished with our troop! We need a plan of action and be set for the future meetings to help relieve some stress of planning everything between each meeting!

One last note, as I am getting tired and starting to rant. Selena makes me so proud, for who she is, how far she has come and how wonderful of a daughter and person she is growing to become. We get compliments for our parenting style with her and how we tackle the issues we face with her. I know we aren’t perfect, but we don’t stop trying, we don’t stop trying to figure ways out to help her. We don’t give up and it is paying off. Every day, every month, every year, Selena gains new behaviors, loses behaviors and only gains more abilities and knowledge. I am proud to be her Momma, I wouldn’t wish for her to be anyone else.

J

P.S. Happy Halloween!! I might as well just make this October 31, 2013 since it is 10 minutes until tomorrow.

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August 23, 2013 August 24, 2013

Hey, hey! Has it been 2 to 4 months between my posts? Not quite there yet. I’ll come back later ūüėČ Hah just kidding! A lot of exciting and new things happening in our lives, that’s for sure! School just started this week and Selena is doing…alright. She is having a hit and miss kind of attitude, I’m sure it will level out once she get into more of a routine again.

This is a quick post, time seemed to have gotten away from me tonight. Some awesome points to make!!

They are going to move her from the self isolated room she’s in now and try her in a regular “VE” class, which is just a special ed class that has more than 6 kids and more work! I’m excited they will be working more with her with her writing and making complete sentences, she is not very good at that right now. She likes to put capital letters mixed into the sentences and she does not really like to be told to change it.

Hoping this all works out, this is a big step up for her!! We are so so so so so proud of you Selena!!

Also, Selena is going to be a big-big sister, we just found out that I am pregnant! I’m sure that this will be stressful for her as well, so I know that I’ll do everything I can to help make sure that this transition will go as smoothly as possible. The other girls are excited as well, Hope said good night to my belly. So adorable! Emma has her reservations, she is worried that we will throw her to the side when the baby comes! No way!! That will NEVER happen, we love our girls, each and every one of them and yes the baby will take some more attention at times, but that doesn’t mean we are going to leave the girls in the cold. We love them too much for that!

Selena lost both front teeth and all of the new ones are growing in nicely! I hope she can get her grinding under control, I’d hate to try to get her to use a mouth guard. Oi vey.

Girl Scouts tonight was challenging, she did not want to participate and spent most of the time hiding under the table and being in the back room hiding under a chair. She kept saying she was scared and couldn’t do it. I just let her be in a comfortable space and eventually talked her into coming back over, with my arm around her the whole time. I don’t know what was going on with that, but we are now have the meetings at our home, so that is also a big change, for all the girls! OOOOOOHHH and Emma and Hope are now in our troop!! Yippee!!!

I am now also going to college in the evening, Selena is handling that really well, we have been preparing for this for about a month. I’m glad we did, because if I’m just the slightest bit late coming home from work, she gets very worried and worked up, thinking that I’m never going to come home. Poor kid.

Time schedules in the morning are hell! She thinks she is always late for the bus, screaming, throwing herself down, jumping up into these split jumps and being very anxious. Mind you that this happens when she is standing on the driveway and the bus pulls up. Today she was taking her medications and the bus came, all I did was say that the bus was here and she totally lost it. I had to walk her up to the bus, she was panicking and screaming. The bus helper was trying to help her, but Selena was just arguing that she was late. I hope we can work through this, because it seems like a bad mental time for Selena and I know that I just want her to be happy, especially when she leaves us.

Ok, it’s late and I’ve tortured my darling enough. Hope to write more soon.

J

“The Night Owl”

 

August 10, 2013 August 11, 2013

Filed under: The Usual — Chobie @ 2:28 am
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Time sure does fly when life is busy! We just did our bridging/re-dedication ceremony today and Selena is an official Brownie Scout! How exciting! Emma and Hope joined the troop so we are going to have a blast with them as well!

Selena has been having a rough time with the transitioning back into the thoughts of going to school. She is having a bunch of meltdowns, having a hard time understanding things and being pretty defiant. The defiance is probably just due to her age and not the autism, but you just never know.

So I was thinking, at my rate of posting, it is going to be perfect for a movie when we get some more years down the path. Annnnnd…fade scene… hehe. Oh the joy of recording everything. I wish I were better at it. My plate is still rather full and I just tacked a bunch more things on. College! I will be going to college after work on Tuesdays, (after Cheer) on Wednesdays and Thursdays. We have been prepping her for it since whenever I get home late from work she freaks out. I don’t want this to be too difficult on her. At least it will only be for a few years and we will all be in a better place. I just worry with me being gone so much in the evenings, it makes me sad to think of missing out on dinners, homework and Wednesday’s bed times. At least it will give Daddy-O and Selena a chance to do some bonding. I think it’s important for a Daddy and daughter to stay close, this is a great opportunity.

We’ve been telling her which days I will be home late so she’s been telling our babysitter that she will be with Daddy on those days, which was rather confusing for Tameka until we explained everything to her. Selena has been having a blast with Tameka this summer. First it started out with going to Donna and Jude’s after summer school, which was interesting. Jude is special like Selena so they either loved each other or hated each other. Very set in their ways. LOL! It was good for her to hang around another child, so it was alright, they worked through their differences. Now she’s been hanging out with Tameka which started out good but now she is just being grumpy, lots of meltdowns and really tired. I don’t understand the being tired part, but maybe since everything is kind of a emotional roller coaster for her right now. We are trying to maintain the emotionally supportive role even though at times she deserves a swift butt spankin. They have been going to the library for all of the fun activities that they have to offer and playing with other little friends.

We recently took her out to celebrate her reading 30 books this summer so far! We went to Snook Haven and she enjoyed her time eating chicken wings and listening to live music after we spent the afternoon at the pool. She can swim with no floaties on….mostly!! She gets herself so worked up that she can’t focus and just gives up. I hope that she will continue to grow and be able to work through this so that these little things don’t stop her from accomplishing her goals. Selena loves the water and enjoys doing cannonballs into the water!

She lost her 2 front teeth and the Tooth Fairy treated her very well! She is loving the missing front teeth because now she looks like either a Tiger or a (nice) vampire. So adorable.

School is starting in 1 week from Monday, that should be interesting. She is wanting to go back very badly.

*Sorry, passing out, will have to write more later, sorry ūüė¶ *

J

 

June 4, 2013 June 5, 2013

Selena is getting ready to bridge into Brownies and we have made it through our first year! We have had our ups and downs with behaviors but overall she is such a great little girl. She has been acting out a bit more since it’s becoming the end of the school year, but naturally so. There has been little to no self injury and I believe it’s partly because she has a few semi-loose top front teeth that are taking up her idle hand behaviors like picking and scratching! Hooray! We are so proud of her and how much she’s grown.

The school ended, she did not meet any of her I.E.P. goals this quarter but is making progress and I’m so proud of her, she has come a long way! I like to look back at my older posts and see how much she has grown, all she has accomplished and everyone who has supported her along the way. Such a huge thank you, you rock! We have had our ups and downs with schooling and our challenges with first grade. From smacking and pushing classmates to being pushed into bookcases, it’s been a rough year, but everyone came out ahead and some even with “I’m sorry for hitting you” cards! It has also been a really great year with her making friends, reading better and better, doing math equations like no tomorrow (when she wants to) and even enjoying after-care; meltdowns do occur but almost no issues! Hooray!! She is going to be trouble when she gets older! She has had 1 kiss, 2 boyfriends and 1 husband through this school year. Since she will be in the same class next year, but with a 2nd grade curriculum, I bet she will have 3 ex husbands HAH!! At least they know to not mess with her or she’ll pop them one, oh goodness.

We went through the motions and had a PT evaluation done because her doctor recommended it. We have been waiting to get it done due to insurance reasons and also because I didn’t really think that she had a serious issue, just an irritating one. I kept pushing it back and we are usually so busy it seems to get the back burner. So push comes to shove and I take her up there during our doctor extravaganza Selena and myself had one day. Everything went really well and there was no follow-up recommended, which I figured was going to be the case. What irritating issue did we have? It’s been so long I don’t remember if I wrote about it or not so I’ll tell you again. She loved to drag her toes in her shoes. She would shred a pair of shoes in a week and a half to 2 weeks, well only the tips of them.¬†I mentioned it to the doctors and they wanted to have a physical therapy eval done, I agreed although I think that she does it for stimulation reasons. We ¬†went and it was all good, no reason to pursue it any further.

That day was crazy! We had 3 doctors appointments and 1 Girl Scout shop to attend and a meeting! First up we had her doctor’s appointment to clear her from a month and a half ear infection, yay finally better! Then a dentist appointment because it seems as though she is grinding her teeth down and it looks like it’s going to be painful here soon enough, hopefully they fall out soon! I was not impressed at all! They were trying to tell me that Selena couldn’t be autistic because of how she interacted with them. I was rather irritated and I can not f’n stand when people dribble ignorance out of their mouth like they have seen it all. I have a standing appointment with Dr. Bowles so I don’t understand why I had to jump through 6 hoops, 4 of them being wrong and then back through the 1st one just to get her looked at by someone else so they can tell me she isn’t doing anything to her teeth that isn’t “normal”, try to teach her Spanish and try to tell me that she can’t have autism. F them, never going back, quit with the autism stereotypes already!

While I’m on¬†that¬†soap box, I will just vent a tad bit more. I am well aware that Selena’s name is very Hispanic, I can not deny that because she has her biological father’s last name and he comes from a Cuban family. Moving forward, whenever we go to a new doctor or anything with the health dept at all and school board at times, we get notices sent to us in Spanish even though English is clearly marked. At that P.T. eval we were in the waiting room and we were called up to fill out some more paperwork and as Selena and myself were walking up I see the receptionist turn her head and make a comment to her co-worker about how “she got the wrong paperwork” and “I thought you told me you saw they were hispanic” – “Yea I was just looking at the name.” Really? I’m right here and a bit offended. I shrug it off and move forward. But it’s seriously so irritating!! I can’t wait until we all have the same last name!! The girls are really really excited to be in the wedding! So are we!

Our garden has been doing well, we’ve been getting to harvest our yummies and the tomatoes have been spectacular and I don’t want to ever have a store bought tomato ever again! The heat is a hard one to fight off, we are definitely learning which plants will not survive a summer in Florida. We have more Cayenne peppers than we know what to do with, I have to figure out how to preserve them properly so when we get enough harvested we can make an oil or something similar. You have any suggestions, that would rock! Selena really enjoys to help in the garden and she is our awesome grasshopper remover. She has no fear, she will pick up a full grown grasshopper (who like to mate in our backyard for some reason) and carry it to the fence to get out of our garden, while reprimanding it for even thinking of eating our leaves. I just love her! Selena used to enjoy being in the garden more than now, she has this issue with getting her hands dirty…she has always had a texture issue. Couldn’t play with play-dough for the first 5/6 years of her life, has issues fingerpainting, mud or when she gets a hair on her (which is bad because mine goes almost to my butt and they are LONG heh) and now she is getting pickier with her socks. We work around it and she helps out using tools and picking the fruit. The best parts I think!

Selena has an obsession with Teenage Mutant Ninja Turtles, she loves them and is a part of their crew. She’s Rose, Raphael’s sister and we gifted her a dress up set for her graduation present. It includes Raphael’s eye mask and sais, weapons, and she wears it all over the place! She hasn’t even complained lately that we took the movies away. Only watched them for 3 or 4 days and she was hitting kids at school so we removed them from the house. She had perked back up and was doing well in school again so we rewarded her with the dress up costume that she was eye-balling. I’m glad to see her so happy! I would like to add that the new TMNT are nothing like I remember, I’m pretty excited they are back in a new light with way better imaging technology. I’m happy that we could show her the older style cartoon, even if only for a few days. I feel like I’m getting so old, heh.

Grammy and Papa visits are always a blast, they are always doing a new craft or going on an adventure. Selena sure does fill up there on some delicious foods and I don’t blame her! The crafts Grammy does with her are always so neat, ya know….I am looking for another co-leader as of yesterday…hint, hint. I’m excited for when Selena is a Brownie because there is a bug badge and that is right up Papa’s alley! She is so cute with him, you can tell she loves her Papa.

Church visits with Mahja have been most interesting, Selena is enjoying herself and I’m glad that she is getting that experience. I think she just likes hanging out with Mahja! I always try to get her to tell me some things that happened while she was in Sunday school but she always tells us that she doesn’t know but she is happy so that’s good enough for me! That’s a fun day because we get to spend time with Mahja. Who I have to say is a pretty awesome woman right about now and I am blown away at what we’re doing to go do in 9 days. We’re going to Disney for a 3 day excursion! I know right!! We are so incredibly excited, I can’t believe it honestly, we are so blessed. I can’t wait to see Selena and the girls’ faces when we get into there. Grammy is coming as well and she just loves Disney so it will be a blast for sure!!

Guess what Selena can do now!! With the help of arm floaties but still….she can swim! She is blowing me out of the water by how good she’s getting at it! Once she could put her face in the water, we were able to get somewhere! Getting all those parts working at once doing different things can be a challenge. Move your arms, move your legs and hold your breath at the same time is a lot to do! She is doing really awesome. I saw this thing for the Special Olympics swim team and I tried to get information to join her up but she has to be 8 to sign up. No, I do not think that she ready for hardcore swimming, but maybe they have something for her ability level and could be good for her to be introduced into a team type activity so she can learn healthy competition and that it’s ok that other people “beat” her and are independent with their choices (not what she wants them to do). I have been thinking a lot about soccer over the past year and was thinking of trying to get her into that. Selena says that she likes it, but I’m not sure if that will be something we can swing with our current schedules and all the activities our family is already involved in.

We have made it through our first year in Girl Scouts with only a few hiccups and I am stoked for next year! We will have a Daisy/Brownie split troop and will be doing more activities since all of our Daisy petals have been earned and the journeys ¬†are pretty much done through. I’m not really impressed with the Daisy ones, the Brownie level journeys are much better in my opinion. We had a fun year, we just recently visited a fire station and saw all the ins and outs of the trucks and where they stay. The girls even got to meet a new nurse that recently joined the BayFlite team and was a mom to a Junior scout herself! She asked them if they knew their promise and gave them a detailed tour of the helicopter. What a great time, the staff did a wonderful job and the girls had a blast! We will be doing our Clover Project soon enough so when we do our bridging ceremony we will also have our Clover Award ceremony so the entire troop can be involved! It will be a blast and we will also get to have some local Brownie girls come to the ceremony so our new Brownies can be welcomed into that level. If anyone reading this can dedicate every other Thursday from 6:00-7:15/7:30ish, open for communication and creative insight, occasional weekends and event dates please let me know! It’s a lot of fun and the girls are great, I’d like to give them an amazing Girl Scout experience and you can help too!

Holy cow, I think this is long enough, it’s late and we have to be up extra early so we can shuffle everyone to their respective places and still be to work on time. I will try my best to be back soon, working on getting back into the groove of it, too many gaps for so many events!

Much love,

J

 

November 21, 2012 November 21, 2012

I know, I know. You don’t have to say it and neither do I. Let’s just say that procrastination + a super over-flowing plate = blogging getting pushed to be a back burner activity. Let me try to play catch up while I have a chance to. I will probably rant a bit and talk about this and that and make a ginormous post. So take a minute, go to the bathroom, get a drink, maybe a snack and then come back. We’ll be here.

Where did we leave off? Oh yes, Halloween! Lately, when we are going to be having a lot of changes in schedule, I try to get her full attention and explain to her what the day will be like, what we will be doing and what order we’re doing it in. I’m not sure if it has been effective yet, but I will continue to do that for her! ASD or not, I think every child should be informed and not just toted around mindlessly. This Christmas break should be interesting for her and hopefully we will get through it smoothly.

A quick thing about her meds, she is on them full time, 3x a day and when we miss a dose, we can tell! Also, I tried to start weening her off them by cutting 1 dose in half once a day and it was bad. I don’t think she’s ready to be cut back on them, which is a bit upsetting because I’d love for her to not be on them! However, I am thankful she has them, because the things we are experiencing now with her behaviors would be much, much worse. I have hope that with time and growth she will be able to cut back on them, I just don’t think that right now is a good time, especially since we’re heading into the holiday season.

Halloween went great, she got herself ready and came walking down the hallway with her costume on, her broom between her legs, holding her lantern and her cauldron and her kitty purse and then realized that she didn’t have enough hands to effectively hold everything! I hooked her pumpkin lantern to the end of her broom and we were ready to go! ¬†I got a bunch of glow sticks so we could wear them like necklaces and she really enjoyed hers because they gave us all magical powers. We had a good run going with the trick or treating and we got to the last road in our little neighborhood and it was the most alive one yet! Lights, music, people carrying on, tons of decorations! Me and Daddy were excited to go down a not so drab street like the others…but Selena would have no part of it. She was done and wanted to go home and since we were going out for her, it was time to go home. For her it isn’t about the candy or going out late. It’s about Selena getting to dress up and go into a fantasy world where she is a good witch that spreads her magic and says hello to everyone.

*****Super side note! I love her echolalia at times! Especially when we are hanging out with Erin and Gareth, because Gareth is¬†British! She blatantly tries to repeat how he says things, it is just too cute. It all started with Harry Potter – magical things, cool accents, and the general awesomeness of it all. It went from repeating simple Harry Potter lines, to using the accent with everyday conversations and I won’t lie, I helped perpetuate it because I get a bar-wenchy kind of accent when I try and it’s just fun. So back to Gareth. We were helping them bottle up some beer one evening and Selena was in full swing, just carrying on and repeating anything he’d have to say. It was a riot!!! She did pretty good too.¬†Having behaviors and quirks that are brought on by the autism is not always a bad thing! Try to take these things and turn them into a positive behavior.¬†Granted, not all of the behaviors associated with autism can be manipulated into a positive light, but some of them can and you should take every opportunity to show your child that they may have something going on with them, but they are still amazing and unique. Gosh I’m just ranting today, here goes another rant.

Disciplining a child with Autism is so absolutely confusing and frustrating (for both parties). When do you discipline them? When do you give them support, love and encouragement instead of a spanking or time-out? How do you know if it’s getting through to them? How do you know if they are acting out because they want to or if it’s just a result of a sensory overload? I have went over a few instances in the past, where disciplining was so ineffective but I didn’t realize that until much later. Now when she has bad days and does things wrong, I try to get her to communicate with me, which is usually a dead end and only because if I ask her how she was feeling, all she says is that her heart started beating really fast and it was going crazy. Anxiety attack maybe? We’ll keep working with her and hopefully we’ll find something that works for Selena. Her behavioral pediatrician said that when she does all these things at school: the meltdowns, lashing out, being disruptive, not doing her work; that we should support her when she gets home, be there for her and ‘gentle’, soothing, and promote a relaxing environment because she is so emotionally drained from a rough day at school. You can visibly see that she’s had a rough day, her eyes are a bit swollen or a bit sunk in and she has dark circles around her eyes and she looks like she had been up for days. I can agree with the pediatrician to an extent. If she’s have genuine meltdowns then yes, we should be supportive and not be rough with her. However, if she is consistently being disruptive, trying to cause physical harm to anyone, or anything along those lines, I will try to at least give her a good talking to and try to get through to her.¬†If you have any suggestions or have experienced this and know of a way to effectively get through to her, please please please let me know!!¬†

Alright so back on track with what we’ve been up to. Halloween – check. Oh Girl Scouts!! Selena is really enjoying her time as a Girl Scout and she got invited to her very first birthday party!! I remember times when I have cried because she still hadn’t been invited! We are doing crafts, bonding and having a blast! We are about to start making some homemade ornaments so we can deliver them to a local nursing home. Selena has earned her light blue petal, for being honest and fair; her dark blue promise center, for gaining the basic concept of the Girl Scout Promise; her violet petal, for being a sister to every Girl Scout and we’re working on her orange petal, being responsible for what I say and do.

We have started doing chores around the house and for every chore that gets done, she gets $0.10 per chore done once a day. We have a rotating ‘chore schedule’ that varies week to week with some basic chores that are done every week and a few that get rotated between the girls. They are really enjoying it. Let’s see how long it lasts! I have a banking notebook all set up with their Savings Account balances, their Allowance balance and our Family Fun Account balance. When they get paid, they get to keep all of it in their allowance jar, but as soon as they want to ‘cash it out’ then the mathematics begin! 10% goes into their savings and 10% goes into the family fun account and they get 80% to do with what they want. It was so cute, Emma had about $7 in her hand and she was counting it all as Mahja asked her what she was saving her money for and she said, so I can buy something at the Dollar Tree. Oh how cute, if she only knew she could already buy 7 things there. I love their innocence. I know that right now Hope likes to do chores because she gets sticker stars, Emma feels like a big girl and Selena like the stickers too, but I am hoping that as time goes on they really gain a concept of saving money and being responsible for what they do, how they take care of themselves and their things.

Our garden has begun! 4 pumpkin plants, a tomato plant (going to get a few more), green pepper plant, 8 green bean plants, 8 broccoli plants, 8 pea plants, 3 healthy basil plants, 2 cayenne pepper plants (one has a super nice pepper on it), 2 cilantro (waiting for the other seeds to perk up), and trying to grow some chives. Selena loves to water the plants and help take care of them! I can’t wait for her to be able to go out and pick some fresh stuff off! Taking care of the plants are part of their chores, not like they need any incentive to help with the garden, they love it!

Thanksgiving is coming up, tomorrow actually and the girls are going to make some decorations for the tables, help make some homemade butter and be great little helpers in the kitchen. Selena is handling this well I think, I am going to go over everything with her tonight so she won’t be so in the dark. She is at Grammy and Papa’s today, hopefully she’s having fun! I’m sure she is. Grammy said something about shopping!! She went over there last night to spend the night so I didn’t have to rush around all crazy in the morning before work, which actually turned out well because Daddy proposed to me!!!! The girls have all agreed to it and Selena said she wanted to have Daddy’s last name and to be a ring girl or a flower girl. How adorable!!

One last thing while I can think of this, remember last year around this time Selena was chewing on her fingers and fingernails, and she almost had to have 3 nails removed and 2 fell off and all that jazz? Well…she’s back at it again and I am trying to do¬†everything¬†to stop her from chewing her nails!! Her therapist at horses gave her some hand play toys to try to keep her hands occupied. However, I can’t let her bring them to school so that leaves the whole bus ride to her disposal. I might have to get the gloves back out again before it gets worse. This year she isn’t chewing her nails, she is picking and chewing the skin by where her cuticles are at the base of her nails. My goodness. This girl just has such a low pain tolerance. Like last night, I get home and she has a HUGE mark over her right eye and a note saying that she ran into another pole or door coming out of the bathroom. I am thinking she hit one of the poles in the bathroom that makes up the stalls. So regardless, she is going to have a black eye for Thanksgiving. She didn’t complain about it at all or anything. So as we’re going to walk out the front door, she walks backward for some reason and smacks the doorknob right into the back of her head. Selena just starts to walk away, I grab her and ask if she’s ok and she told me that she was fine since she wasn’t crying. Daddy got the ice pack and I had her come close to me to check her head out. I told her that she can feel pain and be hurt even if she doesn’t cry. That makes me worried a bit. Because I know she runs into things often and can be clumsy sometimes, I wonder how many times she has actually been hurt, but since she didn’t cry she didn’t think she¬†was hurt. How many times has she suffered through the pain, not realizing that we could’ve helped her?

I promise, I promise, I promise I will try to write more often than once a month. I will make time for you!!

Have a great Thanksgiving and I hope you get to spend it with your friends and family!!

J

Oh and Amy, you are so kind, thank you for power reading our journey and the wonderful things you have said, if you have any insight or have any suggestions, please let me know ūüôā Also, feel free to use our experiences, I’m delighted that our story has helped at least one person!

 

September 8, 2012 September 9, 2012

Filed under: The Usual — Chobie @ 3:05 am
Tags: , , , , , , , ,

Oh gosh, what has happened since I wrote last. Let’s see, we’ve got the girls over this weekend, we had a neurology test done on Selena, she’s back on her meds, we’ve had some pretty typical Selena behaviors pop back up and life goes on some more!

First, let me tell you about her EEG she had done. Selena’s behavioral pediatrician wanted us to get a neuro consult done, so naturally we followed through with doctor’s orders. We tried to prepare Selena for the test since Daddy filled me in that the EEG is where they put nodes on your scalp and they gather brain activity. So we tell Selena they are going to put stickers on her head, that it won’t hurt at all and that we’ll be right there with her through the whole thing. She was a bit nervous about it, but she was telling people that she was having a test on her brain done. She asked why she had to have the test done and I explained to her that they were going to show us just how smart she was and how perfect her brain was. I wasn’t sure what they were going to be looking for or what to expect so I didn’t want to scare her and tell her the ‘truth’. She would then tell me that they were going to tell us how smart she was. Good enough for me!! They said we had to get her as sleep deprived as we could and boy did we try! Now that she’s on the right medication schedule, she has been putting herself to bed around 8:45-9:00 every night. So, when it became about 9:00 she started with the, “It’s time to get ready for bed” routine. I told her she needed to stay up and about every 10 minutes she would remind us that her eyes were very tired and that she needed to go on the potty and get ready for bed. It was rather cute although she was getting more and more upset as the time went by. Me and Daddy each had a long day and we were pretty tired ourselves so it was a stretch for us to stay up ‘late’ too and I was curious on how in the world we were going to pull that off! Around 10 she was rather agitated and was to the point of arguing with us about how she needed to go to bed and how her eyes were very, very, very, very, very sleepy and that she just had to go to bed. Needless to say, she fell asleep on the couch around 11 and we put her to bed. Our destination was St. Pete and we had to be there at 8 am, so we had an early wake up call. She was not thrilled about that either, but we pressed on, made it up there and had the test. We went into the testing room which was pretty small and straight to the point. The woman who was doing the EEG was awesome with kids (well she should be, she works in a pediatric neurology office) and explained to Selena what was going to happen. Selena was naturally nervous and Daddy was right there to take her hand, per her request. I would like to note that I was¬†totally unprepared for all the paper work, my purse was a¬†disaster¬†(which I had to sift through) and I was very thankful that Daddy was there for Selena. They gave her ‘rainbow’ hair with all the electrodes sticking out and wrapped her head up in gauze. She did everything asked of her, although she didn’t like to answer questions like, “Can you name something that is red?” or “What is your favorite color?”, she did pretty good and the result of the tests shows that she doesn’t have¬†epilepsy or seizures. Her doctor wanted to rule that possibility out because children who have autism can also suffer from epilepsy and also that their behaviors could be linked to seizures. That’s great news! We were also complimented on being great parents, that’s always nice.

After the test, we headed back to Sarasota to pick up her medication and they counted wrong! They were 30 pills short! Good thing I counted before we left or I would have been extremely mad! I went back in and they said that it would be filled within the week, that is so frustrating! I could only make it there because it was my day off during the week, I don’t get out of work early enough to make it 30 minutes north to her pharmacy. So now I have to get up there Monday (they’re open till 8pm) and be home an hour late. Ugh. Oh and her pediatrician had said that her medication wasn’t covered by medicaid, well…it is and she just didn’t want to fill out the form? Either way, I got a copy of it and when we go to her next appointment, I’ll be sure to bring it and have her fill it out so we don’t have to jump through these hoops again!

We picked Emma and Hope up on Tuesday instead of Wednesday, and I had to work late so that was pretty stinky. I always love it when they’re with us and when I get home, they rush out to see me and it always makes me smile! Daddy had dinner ready, dinosaur chicken nuggets, mac & cheese and hot dogs for Selena. They always dress up in these really cool costumes and outfits, they definitely know how to play pretend! Dinner is always fun when we have the dino-nuggets, because they like to make rawrs and bite their ranch covered heads off. Just 3 more days until they get to spend the weekend with us! We’re always so excited when it’s our weekends with them, Daddy and myself talk for days about all the fun things we can do! This weekend will be pretty busy though, seeing how we have horses, my Girl Scout leader meeting (I’ll get to that), swimming with Mahja, possibly some cookie baking and who knows what else!

Nothing else really happened before the girls arrived, just work and sleep. Selena has been a bit more defiant but with her getting back on 3 times a day, she’s starting to mellow back out. Mornings have been really bad lately and she has been fighting me to do everything, throwing herself on the ground when requesting to do simple tasks like brushing her teeth. Something is happening to her lately and I’m not sure if it’s something at school, at home or this time of year. We are going to start seeing her do more things because holidays are about to start back up. I only hope we can keep her from chewing her fingers again, oi vey. School is going alright, she has settled in and is now starting her meltdowns at school, but they seem to be further apart (or at least they aren’t writing everything down). She has also not really been eating at all, which is odd because one of the side affects of her medication is increased appetite, and that really hasn’t been happening. I hope that her experience in after care doesn’t get worse since she’s starting to act out in school. Side note, Emma is rocking at school and Hope was nervous for nothing, she’s loving kindergarten.

Daddy picked up all the girls on Friday and the weekend has officially begun! We had salisbury steaks, potatoes, corn and of course dessert, which was fudge bars (the big ones!). Bath time, movie time and they were out. That’s good, because Saturday is going to be a busy day. Early morning wake ups by the girls and we’re off to a start before 7:30. Mornings movies and play time then it’s time for the library for the Girl Scout leader meeting. It was the first time Emma and Hope got to play in ‘our’ library, they had a blast! There are more toys there than at the library they are used to going to. I went into the meeting thinking that I was going to be a co-leader for Selena’s Daisy troop and I walked out of there being¬†the¬†leader for the troop. I am so stoked and nervous at the same time! That means that I will have more to post about! This is going to be a lot of fun and Daddy has said that he wants to help with the troop too!! So far we are up to 12 Daisy scouts interested in being in our troop. Holy cow! ¬†When I was greeted by the rest of the family, they all had their special movies they picked out and were very excited to get to watch them later. We were off to horses!

At horses they did really well waiting patiently for Selena to get done, visiting all the other horses and waving to Selena. InStride is having their annual Giddy-Up fundraiser and we’ve begun taking pledges on Selena’s behalf. They have an online donation page set up which will go directly under Selena’s name. If you would like to give a monetary donation or would just like to go check out our pledge page (has a cute pic of her and her horse) please follow this link.¬†http://instride.dojiggy.com/ng/index.cfm/aa1a98e/regPages/pledge/SELENA/¬† I don’t like asking my friends and family for money because I know how hard it is right now financially and every penny gained is a penny earned but if you are able, willing and wanting to donate to a program, click that link. Hehe. Don’t worry, we still love you, no matter what you do!

It’s now Saturday night, Emma has been sitting here proofreading almost my whole post, we have a busy day tomorrow and I’m ready to spend some time with Daddy before we pass out ourselves.

J

*For the record, 8 year olds can try really hard to proofread but they don’t know all the rules of English or grammar yet, so it makes it a bit difficult. Although her input is greatly appreciated ūüôā I have edited the post now that she’s passed out.