Dirty Shoes

Join us with our journey through Autism Spectrum Disorder

March 3, 2015 March 3, 2015

Filed under: The Usual — Chobie @ 12:44 pm
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So here I am again, trying to get a post out! Selena is doing so awesome, we just recently had birthdays and she is 9 years old now and still unmedicated. I truly believe that taking her off of the meds has helped her in more ways than I could imagine. However, we are going through some pretty difficult life changes and maybe some antidepressants might do her some good. She isn’t big with telling me how she is feeling, but she makes it known on her school worksheets in the margin and on the back. She will write things like “I am blue” and “I am insane”. I am currently seeking counseling for her so she can address these feelings and can get help to work through them. I have faith that she will come out of this low, it will just take more support than what I can give her and an unbiased, uninvolved ear to listen. My heart breaks for her as I hear her crying at night and generally feeling down. Other than this set back, she is excelling in so many areas and I am so proud of her!

Speech therapy is going great and at the last I.E.P. meeting, I found out that they want to graduate her out of speech therapy! What a joyful day that was! I cried tears of joy and every time I think about it or speak about it, I get so full of happiness that I can feel myself getting choked up. To think, just 5 years ago, she was not putting more than 2 words together and was not speaking sentences. Now a days, you would have no idea! I think that when she graduates from therapy, we should have a celebration!! Now to figure out how to do that!

We have been through so much, and it is starting to pay off! From speech, to meltdowns, to comprehension, I am amazed with this little girl. We still have a road ahead of us, but it doesn’t feel quite so rocky any longer. We do still have her battles as she is becoming more defiant and resistive towards me and adults towards undesired activities. She openly expresses how much she dislikes things and let’s me know that she is displeased and will refuse most of the time. Her aggression is also needing to be worked on since she can’t control it very well yet. She is quick to throw desks and cause quite the commotion in class. Selena’s attitude is atypical for a girl her age, just a bit more intense. I am hoping with the right structured support and reward system, that she will still be defiant, just with less hostility. I am now more aware of how I carry myself, as she is definitely picking up on it more and more everyday.

Jacob and Selena get along so well. He is only 10 months old, so she has yet to see what being a big sister to a toddler is like! I will catch her singing to him, holding and rocking him, and giving all of her love to him. Watching them interact when she doesn’t know I am watching, melts my heart. They are so excited to see each other that all I hear is laughter coming from the next room for a good half hour when she gets home from school. I have to keep reminding her that he feels pain and has emotions just like she does so she watches how she sets him down and interacts with him. I can successfully leave her in a room alone with him and not be afraid that she will unintentionally do something that would cause him harm. What an blessing, that was a scary couple of months! She is turning out to be an amazing big sister and I am blessed that it is working out so well between the two of them. I hope their relationship can become even stronger, especially when he gets to a more demanding age and she hits puberty.

A major milestone was hit just recently, she will get herself ready in the morning all by herself!!! Just a few years ago, she wouldn’t even walk to the bathroom, let alone get dressed, and now (on good days) all I need to do is wake her up to go to the bathroom! How awesome is that! It’s great because Jacob needs quite a bit of attention in the mornings and I just do not have the ability to orchestrate dressing her, and changing/feeding/tending to him. It definitely was rough the first 6 months of his life, but now just a few months later she is coming out of the back of the house all dressed and ready to go. We did have to play around with bedtimes, and I think we have finally got it right! Watch, I will say this and she will be a difficult child tomorrow morning!

One last thought, I hope that when she is old enough to understand that I have been writing about her for years, she doesn’t get upset or embarrassed. This is the story of Selena and I will continue to share our ups and downs as we navigate through such a confusing disorder. I love my Stinky and would do anything for her, no matter what!

Have a great day y’all.

J

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August 9, 2014 August 10, 2014

Filed under: The Usual — Chobie @ 2:05 am
Tags: , , , ,

Well holy cow folks, it has been almost a year. What the heck have I been doing with my time? Well, it’s been a busy life I tell ya. Juggling 3, now 4 children and all of our extra curricular activities has taken a toll on my hobbies! We celebrated our first year married and our first child together. He is absolutely adorable and we couldn’t have made a more perfect child. Sure, sure I’m going to be biased. I have to be.

Since this blog is about our path, I will try to stay on course with Selena, however Jacob and our adventures back wearing, cloth diapering and being a newborn might get in the way. I will allow this post to catch us up with Selena and her behaviors before I get to in depth with all this new way of parenting which has me tickled pink.

With every new baby comes a sibling that gets jealous. Selena does just that. She has moments where she is super duper out of this world jealous and will act passive aggressively towards him and us. We had a scary incident where she actually covered his face up with stuffed animals and said that she did it because she wanted him to be quiet. I just so happened to have a towel in my hand and put it against her face and explained that this is what she did to him. I hope she got the picture, because I don’t need her smothering her brother because she doesn’t understand anything different. I feel bad not allowing her to be alone with him, but until I can be 10000% sure she isn’t going to pull some stunt again, I can’t allow her that alone time.

Another instance is when we had our first meal post pregnancy where I didn’t have Jacob hooked  to my boob and he was sleeping in his crib. Selena then yelled so loudly that she woke him up and I had to pause dinner to tend to Jacob. Well, I was livid, crying and emotional. It had been just about 2 weeks into this new adventure and I was so overly exhausted that I lost it. I told her that when I got to eat my meal, she would be allowed to eat hers as well. She got so upset and ran to her room. With Selena it’s all or nothing. If she gets into trouble, the world has ended, sign the will, her life is over. So needless to say she was very upset. Whenever she screams, throws things, has meltdowns or refuses to do an undesired activity, she has a consequence to deal with. Either it being time out, grounding, an item being taken away – she has to accept her fate. Well she always gets upset when this happens and starts bawling her eyes out telling me that I hurt her feelings and that I should say sorry to her. Say sorry to her for being a bad child and me having to punish her? That’s preposterous. I refuse. I do have talks with her after everything has settled down but I don’t think she grasps anything. It never feels like there is closure or something gained. I don’t think she ever really learns her lesson.

She has been medication free. I removed them from her when we had a lapse in her insurance. It’s not like I could afford more than $600 a month is prescription medications. When she was last on her medications she was on Respiridone and Lamictal. After we removed her from these medications, her anxiety has actually gone down substantially but her aggression and defiance has risen tremendously. After the medicine was out of her system, her hunger rose! She was eating everything in sight, she couldn’t get enough of it. It tapered down and now we have an opposite effect, she is barely eating anything. She has gotten so tall and lean, I just want to shove cheeseburgers and ice cream down her throat all day long to bulk her up some!

I’m trying to think of the time line and what I need to address. Time has gone so quickly. I keep telling myself that everyday I’ll write and everyday I don’t. I’m sure if I were to look at my drafts, there would be quite a few. Hmmmm…..Good thing I did! I found an unpublished post from friggin February! What the heck man! So yes. Awesomesauce.

From February to now, things have been progressively getting worse with her behavior. From punching and head butting, to being completely disruptive in class, to biting. She is now a biter. How do you fix biting? I had a talk with her, she knows that it’s time to go back to the doctor and to get back on some medication to try to curb the aggression. I really don’t want to do that, however I don’t feel that she is going to get any better and grow unless we can stop the feelings long enough for her to learn how to address them within herself.

She broke her arm about a month before school ended! She was pushed from the top of the slide and her wrist and hand was literally beside her arm (within the skin still) but it broke right off. That was a grueling 6 hours in the ER while we waited for them to re-set her arm so we could go home and see the ortho. They said we needed to do surgery. Morphine also does not do a thing for her and she still squealed like a pig. I felt terrible. I was 3 rooms down feeding Jacob while they were resetting the fracture and I could hear her screaming out for me. Naturally I had to go, if I didn’t I would have regretted it my entire life! Well…we got through that adventure. Then there was surgery. But before that I found her climbing up on the top bunk! Seriously kid?!

Surgery was BRUTAL. Not the part of going in, or being put under or even the surgery itself which lasted a whole 7 minutes. It was the coming to from the anesthetic. I came into the recovery room, 2 people restraining her, her iv being pulled out and bloody, her screaming like no one’s business. Holy cow. I can say that I never want to see that ever again! Naturally I was wearing Jacob the whole time, at least he was sleeping through the whole thing. We painstakingly made it through the cast time with only one instance of getting it wet and a birthday pool party rescheduling. That was some ride! I wanted off!

Will start a new post so I don’t drag this one on too long.

-J

 

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.

 

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 🙂 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 🙂 I have edited the post now that she’s passed out.

 

August 21, 2012 August 22, 2012

Filed under: The Usual — Chobie @ 1:42 am
Tags: , , , , , , , ,

Well hello there. I’m the Queen of Procrastination. I’ve been meaning to get this post out for days and days now. Silly life seems to be getting in the way. Anyway, on to the good stuff, life has been busy! Well, busier than usual.

Where did we leave off? Where the girls were over? I believe so. Oh man, I just checked it out! I’ve missed writing about a lot of events!! Ok, so Saturday, we went to see Mahja, and she treated us to a very awesome lunch and then some swim time. As usual, Emma and Hope did AWESOME in the water and guess what happened?! Selena finally put her face in the water!!!!!!!!  We have been working on water touching her face for yearsand she finally did it!! After that, there was no stopping her, she was trying to swim like a champ, occasionally sitting on the steps and putting her face into the water. She really braces herself to do it, it’s rather amusing. We are so proud of her! The girls, especially Emma, are so sweet, thoughtful and encouraging. She swam right over to her, gave Selena a great big hug and kept saying how awesome it was she put her face in the water and how good of a job Selena did. I love seeing that with the girls. They are all so supportive of each other and try to help each other out. Emma more than the other 2, but that’s just because she’s a bit older. Either way, Selena rocked it in the water and she was trying to doggy paddle so hard, she was getting places! So after hours and hours of swimming, we headed over to the Easter in August that the Bridge Church in Venice was hosting. It was soooo hot, thank goodness that the girls were all set to get into the water slides they had available! Selena wasn’t scared or frightened with all the people  there at all, she did really great. They had some huge water slides, they are like the blow up bounce houses, but with slides and water, so it was a new experience for all of us. As we make our way to the back of the grounds, there was this huge blue slide with a shoot and pool at the end of it, had to be about 3o ft high. Emma was so excited to go down it, Selena was excited to follow Emma and Hope, well Hope is a tiny little thing who was very hesitant but didn’t want to not go down it because everyone else was. They wait in this crazy long line to get their shot at going down this enormous thing. We see Emma and Selena go down, but not Hope…so we wait, and wait, and wait…and I can see through the mesh at the top that she’s sitting up there, wiping her face. OH NO!! She’s crying and at the top of this water slide. No sooner do I think that and I see the man at the bottom of the slide start to climb his way up the ladder and retrieve our Hope from the top of this tidal wave water slide. We were supportive of her fear, calmed her down and gave her high fives for trying even though she was scared. We were there about an hour and a half, but decided to go because the girls had been out for so long, we didn’t want to push them any longer. We didn’t get to be a part of the egg drop, they opened the gates at 5:00 but they didn’t do the egg drop until 7:00 (the guy we asked said 7:30). We almost get home and it’s raining, they are in their bathing suits still, so I had a genius idea. Let’s let them play in the rain! They were so excited! They didn’t know what to do with themselves! Jumping in the puddles, watering the plants from the gutter downspout and just having fun, being little girls in the rain. Naturally after all that, they get into the bath…which didn’t last that long…no duh! They were in the water all day and were ready to be dry! They didn’t last too long after dinner, and snuggled in for a family movie.

Sunday was a pretty easy day. When we could tell they were getting a bit of cabin fever, we suggested a park visit. Since it was raining off and on, we tried to go to a park that was covered. Everywhere we went was a bit moist, but we still have fun, and I got some pretty good pictures taken. We had some lunch, played for a bit…they were rather whiny though I might add, then we went to Grammy and Papa’s to play there and visit! They had fun at their house, although Selena is very accustomed to being over there, so there was a bit of territorial issues with the toys and how everything worked. I had to go explain to her that it was the first time they were over there and to be nice, share and explain the toys, piggy food and everything to them so that they were on the same page. Papa and Grammy spoiled them with some ice cream, we then went to Subway and got some dinner. We always hate having to say good-bye to them but alas, it is what we must do.

The last week before school starts, what a joyous time for Selena. She was starting to get worked up and had some behaviors appear, but that was to be expected. She has started chewing on her cuticles, seemed to be back into serious pretend world with all her ‘friends’, spinning quite a bit more and repeating herself more often. We haven’t really noticed the ‘record on repeat’ as much since we started her medicine. Everyday a new link had to be removed and everyday it got shorter and shorter and it would make her more and more excited, taking a link off excited her so much that she started to shudder on a few occasions. Tameka and her are coming to a close with their time together and it stinks to have to end her time over there, Selena really enjoyed being with her and all of their animals. I did learn a cool way to make crayons, once I perfect it, I’ll have to post up how to do it…the right way, lol. They went swimming, on Tuesday which was great for Selena but something bad happened!! I went to pick her up and noticed this big green goop in the corner of her eye. OH NO!!! Pink eye!!! I stay home with her the following day, take her to the doctor to find out she’s contagious for another 24 hours, looks like Mommy is having a short work week. I was bummed because it was the last week she was going to be with Tameka and I was hoping she’d get to have a great week with her. Friday she went back over there but was a bit lethargic and not very excitable.

I know, I know I still have a weekend and this week to catch up on, but there is this really handsome man with a hurt back falling asleep behind me and I need to go take care of him. Finish tomorrow.

J

 

August 10, 2012 August 11, 2012

Filed under: The Usual — Chobie @ 1:16 am
Tags: , , , , ,

Well the weekend has officially begun! We have all 3 girls here and wowzas is the house so alive already! Last weekend was a few days of relaxation with Selena in a full blown blue power rangers costume, head gear and all, pretending to be in the Octonauts and on adventures all weekend long. We let her go to a few stores in the costume, but warned her it was going to be hot. We barely got to the store and she was all rosy from the heat… Well yea! We are in Florida and she’s sporting a full polyester outfit. Ah well, she had a blast.

So we had to fill out a GARS2 again and I always hate doing that because it makes me have to think about all the things that Selena has a problem with and how our daily life is affected by her Autism. The medication is definitely helping with her defiance when we ask her to do certain things, like put on her shoes, brush her teeth, etc. Selena still has meltdowns when it pertains to her shoes, but more often than not, she’s been more inclined to put them on…maybe because we’ve just started telling her that she’ll just go out barefoot if she doesn’t. It’s awesome that she is coming around in these ‘independence gaining’ areas, however when she brushes her teeth, she’s still learning how to do it properly and we end up having to redo it after she’s tried. She is about 90% there, so that’s great! Her rituals have started, but it’s still not controlling all aspects of her life, that makes me relieved. She has to take her medicine in the cap of the bottle or in a cup, she always puts on clothes a certain way, her blankets have to face a certain way, her princess table design has to face a certain way, which style of socks she uses by the feel of it, where her cup is on the table, her pillows have to face certain ways. Her whole nighttime routine can’t variate in any of it’s order. If we don’t put her arms in her shirt first, she freaks out because she can’t find the arm holes instantly. We can’t say: hurry, quickly, or count down – or Selena’s world will end. We can’t use pet names with her, Selena will just tell you she isn’t “cupcake” and her name is Selena. No lights on in the morning and no real speaking to her until she’s off the potty, dressed and on the couch ready to put shoes on, even then it’s only a word or 2. She has grown so much and she still have so much more to go, I can’t wait to see what the future will bring.

We had the girls on Tuesday we went to the school and got her signed up for after care and the girls were not on their best behavior, but we swapped out some old uniform shirts for some ‘new’ ones. There wasn’t much for them to do there and boy did they express their boredom by running around like crazy lunatics. Wednesday we had to go back to the behavioral specialist who told us to up her medication from .5 mg to 1.5 mg since she was so hyper after she took it. Then we went to Cracker Barrel with Mahja and Selena had a blast hanging out with her and eating some delicious mac n cheese. So to sum up Wednesday, lots of driving, I’m glad that Selena doesn’t mind riding in the car.

Here we are, back to Friday. Selena has been throwing fits off and on at Tameka’s house. Over glue bottles, sticky fingers and picking up water bottles. They prevailed over the meltdowns and she has definitely been having a blast going swimming and doing lots of cool crafts throughout the week, shoot, through out the time she’s been over there! Tameka got a bunny, I can only imagine that Selena had a blast looking at it all day… or maybe she gave it up after we left this morning, but she bee lined for the bunny when we got there this morning. All the girls were just a trip when we got to the pizza place and were waiting in the van for it to be ready. What kids do when they’re bored, it amazes me and makes me try to remember what silly things I did when I was bored.

Can’t wait to see where this weekend brings us, but I do know that it’s Mahja’s birthday tomorrow so we’re going to go and celebrate with her for a bit. I feel brownies, swimming, some pretty pictures, a nice card and a great meal in store for us! But sssssssh, don’t tell her, it’s a secret…well some of it is, but I won’t tell you which parts! Time to get 3 rambunctious girls ready for bed, always a treat!  OH YEA! There is an Easter in August event at the Venice Airport tomorrow and we’re hoping to make it down so all the girls can have fun there, they’re dropping the eggs by helicopter!!!

*P.S. While I’m writing this, I hear the bath start, some whispers and giggles, then out run 3 naked girlies streaking through our house!!!! Lap after lap, giggle after giggle, the only thing they’re sporting are their smiles!

J out