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
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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.

 

October 30, 2013 October 30, 2013

Filed under: The Usual — Chobie @ 9:48 pm
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So Selena is going to be a big sister here on May 4, 2014!! She is very excited about becoming a big sister to a little baby!

Her teeth have been falling out pretty well. She lost both top teeth and then a little canine beside her one top tooth. Only 1 tooth has been coming in up top, so it’s a bit awkward right now for her.

School has been going well, we just had her IEP review because it is time for updates since her initial IEP. It went interesting. I finally met the school psychologist, she hasn’t been a part of any other IEP meeting, so I am unsure as to why she sat in at this one. She just kept forcing her opinion that Selena isn’t in the Spectrum and that Selena needs to be reevaluated because she doesn’t feel that it is even a PDD that Selena is dealing with. I feel as though she is not correct with her judgement. She was very opinionated, thinks that Selena just manipulates and does things that kids this age haven’t learned yet. Well duh. If no kid in her age range has been tested and reviewed for these types of behaviors because they don’t possess the ability to have learned them yet, then WHY would Selena be any different. I don’t know, I don’t like her and I hope that we don’t have to interact again. She was not open to any suggestion other than her own and I don’t appreciate that. When you’ve met one Autistic kid, you’ve met ONE Autistic child.

Yes, Selena is high functioning, but you cannot tell me that she isn’t in the spectrum, there are too many behaviors that line up and too many instances, recorded events, actions and conversations with her that would prove otherwise. If for some chance her first diagnosis was wrong, I will grant a window for error, however her GARS reports, her observations, and everything else tends to prove otherwise. No she is not as bad as other kids, but yes, her issues are still very very very real. Her anxiety makes her just about non-functioning.

Her teacher did point out about how smart she is and how she is right on track with the curriculum and other children for 2nd grade which is WONDERFUL!!! However, if we could only get her emotions and anxiety under control then just think of how much more she could learn and retain in just a year of school. Shoot, a month of schooling! I have faith that this will all work itself out. She is getting better and better every single day and I have no doubt that she won’t be something amazing when she gets older, because Selena is already something amazing now.

We have to go to dance class now, we have enrolled her in Jazz, Hip-hop and Tap and she loves it! She mostly just loves shaking her butt and looking at herself in the mirror at class. Haha. I am just glad that we can have her involved with something where she feels that she is a part of something greater.

I have class tonight after dance, so I will try to update more then and post another post up to finish what I was thinking.

J

 

August 10, 2013 August 11, 2013

Filed under: The Usual — Chobie @ 2:28 am
Tags: , , , , ,

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 😦 *

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 🙂 Also, feel free to use our experiences, I’m delighted that our story has helped at least one person!

 

September 10, 2012 September 11, 2012

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

Another post, so soon! I know, I know! Selena has just been going through some more of her old behaviors and I wanted to get them jotted down while they were still fresh in my mind. I am not sure about what’s going on with her, but I’m trying to get to the bottom of it. The best way to do that is to increase recording of events, add times (if possible) and look for patterns. So on that note, I shall continue with what’s going on with her as of late.

The rest of the weekend went well, Sunday we had lots of fun around the house playing pretend, went swimming at Mahja’s (brrr it was cloudy and the weather was rainy off and on), eating a yummy dinner at Mahja’s house, then back to our house to round up their belongings and then we had to bring them back to their mom’s. Selena was repeating almost everything Daddy and myself were saying, including directions and what we wanted them to do. When we did a bit of light shopping for necessary supplies, Selena was yelling at them to hurry up, don’t touch anything and to “come on, come on”. I would like to add that we don’t talk like that to them, we rarely ask them to keep up with us, but we aren’t rude about it. Oh I almost forgot! They had a test of patience at the store when we were looking for new flip-flops for the girls. Emma and Selena had found matching flips and we were having a lot of problems trying to find a pair that was Hope’s size. No luck. How do you have 1 size smaller than 8 and 1 size larger than 8 with an entire Wal-Mart shoe section completely lacking to have one pair that fit her tiny little feet. That caused some serious tidal waves in our shopping experience, so none of them got to get shoes because Hope wanted us to get her dress shoes instead and well…that wasn’t going to happen and she didn’t feel it was fair for them to get flips and not her. Ugh. So while we were trying to resolve this issue, Selena was reminding us constantly to hurry up and to move on while pacing around the shoe aisle, Emma chilling on a seat and Hope frantically searching the shoes and crying. Daddy to the rescue! He helped calm Hope down, we moved on and finished our shopping trip with 3 extra ring pops and smiles all around. In the van, the girls like to sing and play pretend and generally have a great time. Selena didn’t want anything to do with them majority of the time and resisted joining in their activities. She did join in a few times, but mostly she sat their quietly.

I would like to add that when they were swimming, they all did a really great job and the goggles that Mahja got for them, are SO CUTE! They all look absolutely adorable in them. Selena has happy that she was ‘swimming’ again and she considered herself a full fledged mermaid. We tried to get her to move both her hands and feet simultaneously while she was swimming and it is just too confusing for her to hold her breath, kick her feet, paddle her hands and keep her bearings all at the same time. She is getting there, it’s just going to take a lot more time and practice than the other girls. Selena had a blast and was very excited with herself so that’s all that matters to me. I just want to see her happy.

At the table she didn’t eat a whole lot and didn’t join in our conversations. During the favorite time of the day talk, she couldn’t pick out an activity for that day and was picking things from the previous day. I tried to explain to her what happened that day and she just wouldn’t have any part of it.  I have noticed that more and more she closes her eyes and rolls them back when she’s eating. Also I have to cut everything up into perfect bite sizes because she doesn’t judge how large it is and will just shove the whole thing in her mouth. She complained of her belly hurting and being full more often lately. She wanted to go lay down during almost every meal and just looks drained.

She’s been going to bed super early lately and it usually is a challenge for her to get to bed. Now it’s a challenge to get her to stay awake! She was becoming so independent in the morning. Walking to the bathroom, helping getting dressed, brushing her own teeth, even attempting to brush her own hair. Now she isn’t wanting to walk to the bathroom anymore, she doesn’t want to get dressed, asking her to brush her teeth and hair is instant meltdown. She cries, screams out, stiffens up, shakes and refuses to do what is asked of her. Selena repeats over and over that, ‘her hands are tired’, ‘her legs are broken’, ‘her arms are broken’, ‘her belly hurts’, while crying and refusing to do what is asked. She will put her hands right up to her mouth, half an inch away and she’ll say she can’t reach. It has become a nightmare anymore and I am struggling to get her back to where she was.

School is going alright, however she is starting to have meltdowns in class, climbing under desks and refusing to do her work. She also isn’t really eating her meals in school, but she is eating her green beans… lots and lots of green beans. She is addicted to them now! I think she is doing well in after care because she gets a fresh dose of her medication and it is in full swing when she gets in with all those other children.

At home she has been quiet, even after school she is constantly telling us her arms are broken and her legs are broken. She’s been running in circles a lot more than  usual and hanging upside down off the couch rather frequently. She has been doing more side ways looking and eye rolling. She’s being more defiant when it comes to simple things like going potty and telling us she can’t do it and throwing herself around. Selena will tell us she has to go to the bathroom, we give her the ‘okay’ to go (since she feels she requires permission every time she goes) and she then pitches a fit and tells us she can’t do it. Her independence level is decreasing even though her age increases. I don’t understand what’s going on with her and I don’t know what I can do to help her any more than we already are.

Today she just looked so tired, run down, ready to give in for the day. After dinner she didn’t even get up from the table and was falling asleep at the table, Daddy had to carry her. I’m going to keep my eye on her a bit closer and be writing more frequently until we can get to the bottom of it.

On a side note, I got the contact number for the other woman who is going to be leading the troop with me, gave her a call and left a message. I hope I hear back from her soon, as I am getting the list of girls tomorrow, calling the school tomorrow to see if we can use their facility for our meetings and going to the scout shop to get all our leader/daisy goodies! Selena is very excited at the thought of Girl Scouts and can’t wait for our first meeting. Daddy is going to be a troop helper and it’s going to be a lot of fun, even though I’m still really nervous.

Also, you guys rock!!! Some of our most near and dear friends have so selflessly donated to Selena’s Instride fundraiser! Pauline, Erin & Gareth, Pat & Bill, Aunt Becky, Uncle Greg & Aunt Loretta, and Grammy & Papa to only name a few. We have almost reached our goal, which means we’ll just have to make it higher! There is still time if you feel like giving 🙂 We love you all so much and I truly can’t express my appreciation or gratitude enough for your awesome acts of kindness.  Everyone is welcome to attend her session on Sat. Oct. 6th, I think they said they will have games and stuff set up to make it more fun and interesting. We’ll have to see!

Much love

J