Keira Speak

     At this point in Keira's development she should be able to sustain a short conversation with adults and understand simple one step directions.(and do them) Keira is far from that.

     I wouldn't call Keira Non-Verbal, but she has no reciprocal communication. Meaning, she says things, but on her terms and once in a blue moon. They are usually one word, but once in a while we get a phrase. She is almost never looking at us when she talks. Her way to get us to help with something is to throw it at us or go uh, uh, uh. She can do the help and more signs with physical prompting, but still has to be reminded. I am hearing a ton of Echolalia lately. My favorite the other day:
"Good Girl"- after I put her favorite puzzle program on the Ipad. I have not heard it since, but it put a smile on my face. I guess we need to change our verbal reinforcement to "Good Job".
Other things she says when she feels like it on a semi consistent basis:

"Hi"
"Ball"
"All done or all D"
"Ni Ni"- for night night
"Na Na" for No No
"Didi"-for Bippi
"Go Go Go"- (Thanks to Dr. Suess ;) )
"Uh oh"- whether done by mistake or on purpose lol
Makes Car noises
"Yay" and claps her hands.
Counts" onn, ewe, eee, or, ive, ix
Sings twinkle twinkle little star, but won't do it with you.

She has said other words, but they have gotten lost somewhere in that little brain of hers. I blame the Epilepsy monster. She has said:

"Neigh" for a horse
"Dada"
"Up"
"Out"
"Itsy Spider"
"Where going"
"doggy"
"I did it"
"Nanie"
"Grandpa"
"bye bye"
"apple"
Among many other one time words or phrases that I can't remember.

I do remember Sam doing this and it driving me crazy. I also remember him talking a lot more at this point. BUT, on the other hand, Keira plays appropriately much more than he did.

She is not into reciprocal communication or play. Everything is on her terms. Very shortly they are going to "sabotage her environment" (as they say) to try and MAKE her participate in communication. This may lead to some protesting, but is the best way to get her to pay attention to something other than what she is interested in and communicate with others. It is why ABA works. It makes children on the spectrum participate in things that they otherwise would not.  It should be interesting to hopefully see some progress.  I already see progress in her receptive communication. She understands much more than her testing showed.

Keira and Autism

     It's hard to explain to people sometimes that Keira does INDEED have Autism. People don't understand that it is a spectrum. You can have severe Autism or be high functioning.  Keira can give you a killer smile and a hug, but does not communicate in the way that she should. From looking at you when she speaks to having a major delay in communication. I highlighted in red how she meets the criteria. It is in nine ways. The minimum is six.

Her stereotyped behaviors and interests: Lining things up (not as bad as Sam though), Vocal Stims (saying digga digga digga digga digga over and over again) and a hand and arm thing where she wrings it back and forth and/or holds it straight forward and looks out of the corner of her eyes down her arm.

Treatment or ABA will help her overcome some of these hurdles so that she can function in society, but it will never go away. At this point she is moderately affected for her age. The hope is to get her to at least high functioning, but we take things one day at a time.

Diagnostic Criteria for Autistic Disorder

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction(b) failure to develop peer relationships appropriate to developmental level(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.

Things I never thought I would do as a parent.

1. Do an emergency G-tube replacement when my 2 year old (who has Epilepsy/Autism) decides it would be fun to pull it out. She did this tonight. I managed to shove replace the new tube back into her stomach averting an ER visit and/or new surgery. Some parents apparently can't stomach this. I can stomach doing it myself way more than going into the ER for yet another visit.

2. Hear my husband say: "Well, I guess it's good that she is exploring more things". Trying to look on the bright side of the incident. He was not the one that had to frantically try and put it in. He did help hold her down and asked what we were going to do about him going to work if I had to bring her into the ER.

3. Watch my almost 10 year old excitedly get dressed at the prospect of going to the ER. She kept saying to me that I could not get the tube in. She was bummed when I managed to replace the tube because she was ready to go. I was not going to let her come anyway.

4. Have to get my child's blood drawn to check medication levels. I get to go do this tomorrow. Her little hand has started to shake. A side effect of the seizure medication. She has had more blood drawn than any 2 year old that I personally know.

5. Have grown men run around my house 2.5 hours a day, 4 days a week, to play and teach her using ABA therapy. I appreciate it and know it works, but never thought that my parenting her would not be enough to help her learn to talk.

6. Replacing a pulled out G-tube. She pulled the balloon through her stomach (ack!!)
This is not Keira, but it looks exactly like hers.

I had to push the stem through the hole into her stomach. Then, using one of the external support openings, I put 5ml of water into it to blow up the balloon. Hopefully, this next one will stay put. This was actually the second time I have done this. The first one was because it had been in for a while and it was time for it to be changed.

7. Wonder why I did not become a MD or a Nurse. I actually never ever had any thoughts of doing this. It grossed me out thinking about it. But now, I have no aversion to needles, blood, or gastric juices etc... I was adamant that I was going to be a teacher and have my degree in that. But man, I have done more than my fair share of nursing/researching and diagnosing since becoming a parent.

8. Clean up bunny poop and chase after a dog. I am not an animal lover, but the rest of my family is so I lose by default. ;)

Baselines are done and ABA has officially started!

Excuse my horrible video, but she moves around A LOT! I am really just bad at videoing. She is supposed to be showing me her mouth by sticking out her tongue and she does! Her reinforcer is praise and tickles. They are working on belly too. This is one of tons and tons and tons of programs they work on with her for 10 hours a week until she turns 3. At that point she will go to the developmental preschool program.

She is also really digging the Apps on my phone and the Ipad. The Ipad is easier for her to use. There are so many programs out there for her to try. Her favorite is Shape Galaxy and Adam's Game. I am working on trying to make a "Keira's Game" so all of the people and objects are her own. After she touches three of the right objects the last object goes across the screen in various sizes, while making music.

 

Early Intervention is the key. We have 3.5 years to work on her talking and learning in order to get her ready for Kindergarten. Hopefully, the seizure monsters don't get in the way!! She is on Depokote and supplemental G-tube feeding and that seems to keep them at bay. We go to see yet another Epileptimologist in April to see if we can get more info on what is going on.

On a side note, I will have a Kindergartener, 5th grader and 8th grader then. (ACK!!)

Vacation must have been WAY too fun.

Our kids are having a hard time getting back into the school routine. It was rough going, but we made it through the day. (I think, we still have 2.5 more hours of the day)

Highlights of the day.

Sam going to school. lol.

I am slowly getting more organized. All the piles in the kitchen are gone. An organized system of piles in bins. My trip to Ikea proved successful in the getting more organized front. I love that place!

Sam saying, "I don't say the S or L words." (Sexy or Love) I had just told Kailyn not to sing the song "I'm Sexy and I Know It". He tries to one up her when I correct her behavior by saying he does not do it. The song is on the TV all the time and I guess the kids at her school sing it. Sam heard it on the TV this am (the Today Show was on in the background while we were getting ready for school and the beginning of the song was played) He sang, "I'm the S word and I know it". LOL  I told him he can say love, but for some reason he thinks that he can't. He also does not think he can look at people kissing. He hates when people tease him about liking a girl even though he chases them at recess on the playground.

Keira stinking her tongue out at me. When you ask her where her mouth is she goes, "aah" and sticks out her tongue with a smile. She has an infectious giggle when you tickle her afterwards.

Kailyn asking me not to transport her after she falls asleep. I let her go to bed in ours so that she would fall asleep early. I could not understand what she meant? Did she not want me to press a Star Trek like button and transport her somewhere? Then my tired brain started to think harder. She meant transfer her back into her bed. Well, we will. lol

Keira officially starting her ABA in home program. They were doing baselines for almost a month. Now the real work starts. She anxiously awaits either Mark or Brendan at the door once the dog starts barking. She even cried the other day when Mark left.

Highlights of the week.

My kids going to art class for four days. They loved it and made a pretty cool masterpiece using melted crayons.

Playdates. Kailyn had a few and we had one with their cousins. They seemed to have a blast.

Kailyn whispering to me in Boston that she knew the secret of what LMFAO was.
Laugh my fat a$$ off or Laugh my freaking a$$ off.  I wonder how long she has pondered what those letters meant and if she really knows what the F is? lol  If she does, she is really good at hiding it.  If someone has told her it was not us and she has not heard it in our presence. I told her to keep it a secret and not to tell anyone else. lol   It is impossible to hide my children from pop culture. Kailyn takes hip hop classes and it is around them all the time. Especially her.

My nephew asking me if Sam, "Customizes his Beyblades". He turned four in December.

Watching Keira learn how to use the Ipad. She is really good at her shape sorting game. It really impresses her teachers. She can barely talk, but can push and move complicated pieces into their right places.

Finishing up our paperwork for the Autism study.

Going to the Boston Museum of Science as a family. My kids favorite exhibits were the dinosaurs and the human body section. They could not get over looking at the real brains.

Going to Ikea (This is much more fun without kids though ;) )

Kailyn getting her bunny. It's annoying sometimes, but she loves Holly to pieces.

Being healthy over a vacation. The last one was a bust. We literally NEVER left the house. It was nice to be able to do things over the vacation.

Good Moms have sticky floors. A little of everything.

Sam    

     I really LOVE how Sam says some things the wrong way or labels objects incorrectly. Yeah, I probably should always correct, but once he gets it in his head it is hard to retrain him. For instance, he keeps calling R2D2, Wall-E. He won't back down. He calls Kailyn, "Kaiyn" and his reading teacher, "The work lady". He has a hard time remembering names. So, I try, but figure at some point he will get it. Until then, I will sit back and quietly chuckle. Also, note to self: I can't do first grade homework. I tried to help him last night and we got a horrible grade!! Here is a picture of my cutie when he was two! He was such a monkey and always climbing. Just like Keira now.

Someone was talking to Keira about getting a haircut.

1. She had no idea what they are talking about.

2. Why in the heck would I get her a haircut? They acted all shocked she has never had her hair cut. Why would I?

She is totally posing in this photo ;)

Here is a picture of my Dad holding Keira right after she was born. I am putting it here so I can find it for her ABA people identification program. I actually really love it though. It's perfection in my opinion.

My philosophy in life has changed a bit in the last few years. I used to sweat the small stuff. Then I was stuck. I did not know where to go. I could not live the life that I expected. This picture sum's up how I felt. I find this picture amusing! I have found my way if you were wondering ;)

This is my new philosophy after Autism, Type 1 Diabetes, Epilepsy, G-tube feeding and a blood clotting disorder  (that resulted in two pulmonary embolism's) entered my life. Yup, my house is way messier than I ever expected, but I don't care. It's clean, just messy a ton.

And just so a pretty picture of Kailyn is not left out: At camp last summer almost 3 years after her Type 1 Diabetes diagnosis.

On a Valentines Note

     I am pretty proud of my skills of putting together a duck taped tissue box for Valentines this am.-Ha ha. I did it in 3 minutes flat. I forgot that Kailyn's class was having her Valentines party a day earlier than the actual day. We remembered right before bed the night before. Seth went out to get the last minute supplies in the am and just happened to pick up the good kind of napkins that Kailyn volunteered to bring in. They came in an almost tissue box shaped box. I took the napkins out, used her HOT pink duck tape, wrapped the whole thing in it and decorated it with hearts, peace signs, and words of happiness using a sharpie. When she saw it she said, "Cool". She also proclaimed that her box was a lot cooler than other kids. It's the little things that make your kids really happy sometimes and for you in return as well.

    I was also able to get Keira her work space for ABA (Applied Behavioral Analysis) today.  I looked and looked online, but I could not find anything made of real wood. We have already had the fake wood type of tables and they lasted a whole year. This one is made of solid pine.  We got it at the Mill Store. It's unfinished "real" wood. Now I need to stain and paint it. I also have to convince Kailyn that her chair is not going to be Hot Pink. Maybe a Red close to Hot Pink? Sam of course wants his chair to be blue and Keira's captain chair is to be determined. The captain chair was purchased on purpose to help keep her on the chair. She gets wobbly on chairs without sides.  I do plan to stencil their names on them. ;)

My accomplishments of the day. Now for that laundry pile ;)

ABA therapy and Gigantic+Enormous= Ginormous

     Another day for the books and it is not over yet.  It started out with a certain 7 year old climbing into our bed moaning at 4am. I touched his forehead to see if he was hot. Very warm. I had stayed up until 1am finishing up our taxes, so I fell back to sleep knowing he would not be going to school today.  I was wondering about a sinus infection for a few days and figured that it had finally reared its ugly head.  I managed to get a shower in before getting the 2 year old out of the bed and Sam was STILL sleeping and groaning. Totally not normal for him. Even when he is sick, he usually still functions. It has to be something big to get him down. (Later on that am he vomited.) Kailyn had uncharacteristically gone downstairs, tested and asked me to get her some clothing. She usually needs to be prodded out of bed. The night before she had me convinced she was going to be staying home from school today. (Blood Sugars went over 600 and did not register on her testing kit, but we got that under control overnight. A big whole different story) But no, she woke up normal and happy to go. (Thank you God)
     Then I came to the realization that Keira was going to have her first official ABA session with her teachers today. It was in jeopardy of being canceled once again. This was the history: They canceled, we canceled, they canceled and now, WE, were going to have to cancel again. Was this ABA therapy EVER going to start?  So, I came up with a plan. It included Grammie helping and basically reorganizing her whole day. I called the ABA school and asked if it was OK if we did the therapy at Keira's grandparents house. She is there at least one time a week, if not more, and there are plenty of toys for them to use. Grammie rearranged everything (Thank you Grammie!) and came to sit with Sam for 2 1/2 hours.

Miserable Sam

Urchin Keira

     I disinfected a special spot for Grammie. Keira and I went to get to know her new teachers at 12pm after I had bleached and disinfected parts of the house at a feverish pace. I cleaned Sam up, got Keira ready by bolusing her Pedisure and her seizure medicine via G-Tube and got her dressed. I did this while she happily kept tipping over the dinning table chairs and attempted to climb up on every surface imaginable. She had a blast with her new teacher friends and they seemed really nice. They played with her so she could get to know them and get a baseline of where her development is. It will be like this for a while and then "Boom" ABA programs will be produced and the hope of seeing new skills develop will begin.

Brendan and Keira Playing

     While Keira was playing with her new teachers, I was texting the school nurse (Kailyn went down to her twice complaining about her cold trying to get out of school, but no fever), talking with the doctors office and a friend whose child was sick as well. All while answering questions and giving a little background on Keira. I feel like I should write up a history and hand it to them when they walk through the door. Providers never seem to read the paper work. Anyhow, the Dr. decided Sam needed to come in. I was convinced he had a stomach bug like his friend in his class, but they were concerned about the flu and the sinus thing. SO, after her therapy was done at 2:15, we went home, I put Keira down for a nap, Grammie left for 45 minutes and I worked on getting a very sick little boy into the car for a 3:15pm appointment. Grammie picked Kailyn up at school to bring her back and stay with her and Keira. I had Sam in the car and ready to go. We were a little late, but only by 10 minutes.  The doctor decided he had a sinus infection and may have a stomach bug on top of it. LUCKY US!! If he does indeed have a stomach bug, the roller coaster ride is about to begin! I really don't mind if we get one. It's part of life.  I just don't want Kailyn to get it. Having the stomach flu is on the top ten worst nightmares of parents of Type 1 Diabetics. It means sleepless nights and potential hospital stays.
     On that note, Sam seemed to perk up in the afternoon, but by bed time his fever was up to 101 again. He went to bed and had full on walking night terrors about an hour after he fell asleep. He said he was GINORMOUS (I find this word funny) and was screaming that he was bigger than all of us and his sickness was going to grow. Pretty deep. He came in and out of the terrors. All involving spies and him being a giant. This was all kind of funny in a weird sort of way. I have seen this before so I was not concerned. I finally thought he was in a good sleep and snuck downstairs only to have him follow me back down. His fever is down, but he still feels miserable and is sitting next to me watching Cake Boss. My kids LOVE that show.
    So, this is what I do all day. Sit on the couch and eat Bon Bons. What do other Stay At Home Mom's do with all their time? They must have a ginormous amount of free time like me.;)  FYI Ginormous is an official word in the dictionary ;)  The day is not over nor is this story, so, TBC....