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.

THE MANY HATS OF KEIRA

If there is a hat, a bucket, a pot or pan, Keira will put it on top of her head. Even when she is really sick, which she is right now. Poor little bucket of sweetness. Her illness brought on seizures that we have not seen since December. Major bummer to know that the seizure monster is still there. She still puts hats on during moments when she feels a little OK, which reminds me that she is much more than a little girl with Epilepsy and Autism. She has a little spunky personality ;)

This is her MO. She usually dumps toys out of one of her bins and puts a bucket on her head. :)

 Christmas Eve. Trying to sneak into Aunt Katies Bathroom with Grahams Patriots Helmet.

 Hats and hoods to keep her head warm.

 A cloth bucket that Grammie thought would help Mommy get organized enough to put her keys in. ;)

 Kailyns hat knit by her Great Nana Robie.

 Same Outfit. Different Day. :)

Sams T-Ball Hat

 Today at Grammy and Grandpa's house. We got out of the house to take a stroll. Even though she is feeling very sick she was still compelled to put on Grammies Gardening Hat. :)

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.

The Never Ending Autism Study. But, it is all good!!

Here is the info on what we did via the NESCA website



Children's Hospital Boston Research on Autism Spectrum Disorders

Children's Hospital Boston has asked our help in recruiting families to participate in their ongoing research study of possible genetic and environmental factors in the causation of autism spectrum disorders (ASD).

Participation will ordinarily require two hospital visits, the first generally lasting 4 - 5 hours and the second, about two hours, although these are estimates. Families may also choose to complete their involvement in a single, full-day appointment, from 9:00am - 4:00pm. Children's Hospital will validate parking for all participants, and families opting for the full day will also receive cafeteria meal vouchers.

Here's their information:

Autism Spectrum Disorder (ASD)
Study at Children’s Hospital Boston

· Who we are

We are a group of doctors and researchers from the Developmental Medicine Center, the Division of Genetics, the Department of Neurology, and the Program in Genomics at Children’s Hospital Boston.

· What we study and its importance

We are studying ASD and related disorders in order to better understand why they occur, increase our ability for early identification, and find improved treatments and an eventual cure. Specifically, we collect information on children aged 18 months and up who are diagnosed with ASD and their families.

· Your involvement

Participation in this study involves two research visits at Children’s Hospital Boston. We interview all immediate family members, including the individual diagnosed with ASD. The data we collect includes general facts about developmental history, family history, and environmental information. We also collect genetic material from a blood or saliva sample in order to look for possible gene changes that may be related to ASD.

Shortly after the visits, families receive a research report of our observations that includes developmental, cognitive, behavioral and social findings.

If you are interested in participating or would like more information, please contact us at 1-866-982-5826 (toll-free) or 617-355-9152. You can also email us at ASDResearch@childrens.harvard.edu.

We were also sent home with homework and $120 worth of American Express gift cheques. $40 per kid.


And a little homework. These envelopes were stuffed full of info on all five of us. Asking questions on behavior and communication over and over again in different ways. Making sure we answered the question the same way every time.  This took about 2 hours.

I also got a one hour follow up call this week filling in any questions that were unanswered and agreed to do a 2 hour over the phone interview/ research study to help them come up with a form to better identify children with autism at regular pediatricians visits.

I have a feeling I will be asked to do more.  But, the more we can do as a family, the further I hope we can get the information we need to help identify and find treatments or cures for Autism.

Plus they have to tell us anything they find in our gene pool that is treatable. This is for our entire lives. We gave them permission to use our blood for any research studies they would like. We can either decide to participate in interviews/paperwork (or not) that are associated with new studies.


This was well worth it for our family in more ways than one and probably will not end for a long time.

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 ;)

Autism, Epilepsy and Type 1 Diabetes Blaaahhhh

     Sometimes Type 1 Diabetes gets in the way of Autism and Autism gets in the way of Type 1 Diabetes. Today, Epilepsy took center stage. I try to keep things in little buckets and only think about one thing at a time, but occasionally that does not work.
 
     Like today. Keira had a Neurologists appointment at 10:30 and Kailyn had a Diabetes Appointment at 11:30. Then, Keira has her ABA teacher come to the house every day at 12 noon.  I had to choose and Autism/Epilepsy won by default.  Kailyn has NEVER needed a referral to the Endocrinologist nor have we had to pay a copay, but apparently we now do. I learned this when I opened a bill from her last visit on Saturday. Maybe too many children with Type 1 Diabetes are going to the Doctor so they can get their medicine and supplies to LIVE.  So, they decided to crack down on that. I mean really, a documented Type 1 Diabetic NEEDS a referral to get info on how to live and prescriptions to keep her alive? SERIOUSLY?

     The Neurologist appointment was normal. We talked about her seizures, looked at a recent video I took and talked about medication to keep the seizure monsters out of her brain.  Then came the news that her genetic deletion has now been linked to Epilepsy. She is no longer considered a Child with Benign Epilepsy. Now, she is considered to have Early Onset Epilepsy. All because of this gene mutation. I have to admit, I am taking it hard. Benign means she would outgrow it. Early onset means it is with her for life. I can't find much info on it either, which is frustrating.

     However, I am trying to take it with a grain of salt knowing that the research on the deletion is in its early stages.  And frankly, Doctors DO NOT know everything. It is a science. If they knew everything they would be able to tell us what the heck was going on! In my opinion, she has a form of Developmental Delay/Epilepsy that does not have a name yet. We go to Children's Hospital Boston in April (I have had this appointment since December) for a second opinion from an Epileptimologist that specializes in child development. They are ranked #1 in the nation. She may say the same thing, she may not. But, at least we are doing all we can to help our child meet her fullest potential in life.

Boston Trip: Children's Hospital Boston Research, Raincoat Cafe and Build a Bear.

We got up at 5am in hopes of leaving by 6am. We left at 6:10. We were going to Children's Hospital Boston to participate in a comprehensive study on Autism. Having two children on the spectrum and Keira with a special gene deletion associated with Autism made them especially interested in us. I swear the genetic researcher was bouncing up and down in her seat when I mentioned the deletion even though she already knew about it before we got there.

      A team of researchers from the Developmental Medicine Center greeted us on the 6th floor. Some Geneticists, a Psychologist, a Neurologist and a bunch of Post Docs were there to greet us. I think there were around eight of them. We checked in and they whisked us off to sign consent forms. After we got through all the paperwork we were all brought to separate rooms to be tested and interviewed for 3.5 hours. Everyone was fine with this part except Sam. At this point, I think he wished he had gone to school instead.  :) We got through the morning and then went down to the seriously busy cafeteria with vouchers in hand and a wide array of things to select from. One of Kailyn's favorite things about Hospitals is cafeterias. This one did not disappoint.

     Afterwards, we went back upstairs and they did a few more things with the kids while I was interviewed for another 3 hours. While I finished up interviewing, they took every one's blood except for Sam. We were waiting to do him last and did not tell him until the last minute because he would freak out. He did. He did not want what he called "a point" put in him even though they gave them numbing cream. We had to pin him down, but once he figured out it did not hurt he relaxed and watched the TV until his three vials were drawn. It was funny listening to them in the car talk about the blood draw. Kailyn swore that she had 5 vials taken and Sam said he had 4. Everyone in the family had three. I talked about both Sam and Keira for 6 hours yesterday. My face was bright red by the end of the day and my brain was fried. I still have a ton of homework to do that they sent home with me and more interviewing to do over the phone. They usually do the research in two trips, but since we were coming from so far we did it in one.

 This is them playing and being entertained while we waited for blood draws and for me to finish up interviewing.

 The Musical Stairs were a huge hit on our way out. We have been here a couple times and I never noticed this before.

Then off to Burlington and the Rainforest Cafe for a reward. (Or Raincoat Cafe as Kailyn enthusiastically shouted out to the researchers when we first got there) They were very good research participants. It was a long day of cognitive tests etc...and they did wonderful. Even Sam, who I hope won't be completely scarred for life about hospitals.

 In front of the fish tanks and rain.

 Sam and Keira both touching the rain. They inspected every inch of the restaurant and we survived two thunderstorms while we were there. There was a ginormous gorilla right next to our table. I thought it would freak Keira out, but no. Sam was the one that was scared and had to be convinced that it was not real. Kailyn wanted to get up and touch all of the animals.

 Type 1 Diabetes nightmare.

 Volcano cake for dessert. HUGE and thrilling for the kids. Never have had anything like it. Although, it could easily be recreated for a birthday party. ;) Keira loved playing with the top of it.

Then we went to the Lego Store and Build A Bear to get the rest of their rewards. All of them got bears. This was Keira's first bear and I named her Dreamy. She can't name things herself at this point. So, I named her this. I have big dreams and aspirations for Keira.

 The Bear Helper really made them work to put their hearts into their bears.Then, we finally left the mall. We basically closed it at 9pm. We headed home and they passed out on the way. First, Keira about 15 minutes after we got on the highway with Dreamy.

 Then Kailyn with Diabetes Bear and Candy.

 And finally Sam at 10pm, who usually goes to bed around 7:30, with Beary and Armyman Bear.

New and old Bears to cuddle with.

Keira woke up early, but Sam and Kailyn are still fast asleep. I will bring them to school when they wake up.(If they ever do) 

     Hopefully, we were helpful and will continue to be helpful in research for years to come. They will store our blood/DNA for years too and study it as needed. Our names are not on it. Just a number. However, if something major should ever come up they will track our names down and let us know. This also will help save us money on testing they wanted to do on Keira as well.

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....

PHEW!!

White rabbit, white rabbit, white rabbit!!! (superstitious good luck stuff) Yesterday was a day for the record books. The day started off rough, rough, rough, and ended rough. But, we made it through. I can happily report that my kids went off to school without a hitch this morning. A new routine has been implemented to make things go more smoothly. Sometimes things need to get shaken up! 
Anyway, today is the first day of Keira's official 10 hours a week of being in the 0-3 ABA program. She will have a teacher with her 4 days a week in our home. Mon-Thurs. During what was formerly known as her nap time.(This should be interesting) I am letting her have a little free time right now because she is going to get tired out with the constant one on one teaching. ABA is the only scientifically proven way that effectively teaches kids with Autism, but I think it can be used with kids that have other developmental delays as well. Her previous therapists do not believe in it and we did not click because of this. I know it works because Sam has already benefited from it. He was diagnosed with moderate Autism at 3 and is now in a regular classroom without supports or Special Education. He is on the "Tier" program, but I predict that is where he will stay. He is at grade level in all subjects now.
This is my hope for Keira in five years. I opened my blog back up to hopefully document her progress from my prospective. She has different challenges than Sam (Epilepsy and G-tube feeding), but hopefully we can find a way to tackle those issues in the future. Early intervention is the key and I plan to provide as much of it as I can for her. Hopefully, I will get to hear her say momma to me sometime soon!

ps: They canceled. Her teacher has a stomach virus.

"SAY CHEESE"

I was taking a picture of Keira with a basket on her head. If you have not heard, she LOVES to put buckets, baskets, pots and pans on her head. Today it was a meatloaf pan. I think it is her attempt to dress because she can't do any self dressing at this point, although, she has started to put our shoes on.
Well, I picked up my camera and pointed it at her and she said, "Say Cheese". Echolalia, but I will take it! The seizure medicine makes her seem more with it and she is babbling up a storm and even copying our words sometimes. I can't wait until next week when she starts getting her ABA therapy.

"Say Cheese!"

Yes, I am up too late.

Hubby is working an overnight shift and Kailyn is hinting that she is "sick". We laid low today, but she still complained that she did not feel well at bedtime and beyond. Blood sugars were high, but no ketones.  We managed to get all of them bathed, homework done and in bed by 8pm after an awesome Patriots game. Super Bowl Bound again!!! Sam can't wait to start playing tackle football and thinks his first team to play on will be the Patriots. I admire his dreams. Won't crush them quite yet.
ABA will start even more this week. Keira FINALLY got into The Reach School in home ABA program for children under 3. It is going to be like having a Mother's helper 2.5 hours 4 days a week. I can't leave, yet I am not responsible for entertaining/educating her. We can also go on outings with our ABA instructor. There is a double edge sword to having this, but we HAVE to do this for Keira. It is HER future that lays in the balance. The earlier they can reach into that brain and retrain those Neurons and Synapses the better. Best part is that they don't care how my house looks. However, if they are here, I can take advantage of cleaning/cooking instead of following her around as she destroys. ;) Then, when the big kids are home, I can put more time into them.  I am looking forward to seeing progress with Keira and getting a bit more organized.

Something I thought I might never see.

Three years and four months ago Sam was diagnosed with Moderate Autism. He could barely talk, play or socialize. He also threw tantrums about routines and small things, lined things up and had stims.  We knew there was hope, but did not know if he would respond to ABA therapy. Thoughts of him living with us plagued our minds back then. He still throws the tantrums for us and is on the high end of the spectrum, but is thriving in school.  Tonight I put him in his room because of poor behavior and had to sit by the door to make sure he did not come out. He is beyond tired lately and routine changes are not helping. He kept pushing out these notes. One he tried to sound out "I am sorry", but this one just melted my heart. (SamLooMomm) "Sam Love Momma".  This is his very first sentence. It may be one long one, but he did it. This was the only area on his report card that he did not meet the standard at all. Now I need to send this to his teacher and his reading teacher so they grade him accordingly ;)

"I wonder if 2011 will be boring?"

These were the words out of my husbands mouth last night. I paused for a minute and wondered what boring meant and thought to myself: "Oh, he meant no major anythings!"   My answer: "If we look at the last 3 years the percentages are not on our side. Lets hope for normal, whatever that is?"

Bad major things the last three years (............. means I'm not telling you! lol)

Autism Diagnosis
Type 1 Diabetes Diagnosis
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Gall bladder surgery
Unplanned Pregnancy (Such a blessing that I could not imagine life without)
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Birth of our third and last child, which led to....
Pulmonary Embolism and DVT. Good chance of dying.
Recovery of the above PE and DVT (So much pain)
Infantile Epilepsy
Trips to Boston
Failure to Thrive
G-Tube Surgery
Weight Gain (Me)

Good things:

My husband: He is healthy (as far as I know) continues to be able to provide for us, is a great father and my rock. Things get rough, but we always make it through it.

My children: Sam has made improvements by leaps and bounds. No one would know he was diagnosed with plain Moderate Autism 3 years ago.  His report card was a pleasant surprise!! We are getting use to life with Type 1 Diabetes. We would rather Kailyn not to have to deal with this, but she is thriving in and out of school. Keira: The fact that she was born!! I can not imagine life without her. She is so much fun, an easy baby besides the whole epilepsy thing, and just pure joy!! Just as recently as 3 weeks ago was the last time we saw a seizure and she is now in the THRIVING category. Gaining new skills every day. We got the all clear after an upper GI yesterday to get her therapy to try and get rid of the G-Tube. We hope to see continued Physical development.

My Extended Family: We could not have made it through the above without them. We love them very much and are thankful for EVERYTHING that they have done for us.

Here's to a non-chaotic and Happy New Year!!! :)

-Kristen

Cheerleading

Was a hit
There were at least over 50 girls there.
She was still begging to show me the cheers she had learned as she walked up the stairs to bed.
Gorham does not have any teams for her age and they are thinking
of making one next year and she was begging me about it.
So watch out everyone!! She will want to cheer for you and has two weeks
until the next practice to get those cheers down!! 
She is recovering from a sinus infection (when Kailyn is miserable, we all get to be) and her blood glucose numbers have been really high.  They are doing testing at school, which she does not seem to mind, but I am curious how she does when she is high and producing trace amounts of ketones. In the past she has not done well at all.

I cut Sam's hair again today. It came out ok as usual (lol) and we need to buy scissors so I can fix it up before picture day next week.;)  I figured out that he is actually learning in school.
He has memorized some sight words. So YAY for learning.  He misses some work when he is pulled out for Title One for Math and Reading, but I do it with him at home.   He loves spelling words on his buzz lightyear game every night before bed after we read. I hope it is helping him with letter recognition.  It will be interesting to see where he stands when we go to conferences at the end of this month. If he is way behind we will be requesting testing for Special Education. He still has is Autism dx.

Keira did three things today that made me feel so much better and melted my heart.  She gave me one of her sloppy kisses again (my Mom calls them cave kisses) AND a high five.  Her motor planning is definitely off, but it IS there. She can not consistently give high fives, but she knows how to do it and can when her body will let her.  I know that she understands what I say, but it seems like her body can't do it. Sometimes she even shakes her head no (like no, I am not doing it or can't do it) She was also army crawling all over the place today.  Something I have not seen in over a week.  All of this despite the fact that she has a miserable cold.  Her seizures have disappeared when she is drowsy/sleepy, which is also a change from last week.  So sort of progress. As a friend has said "deep breaths".  She has appointments for independent evaluations for speech, OT and PT with CDS and a private therapy group for this month and for a feeding clinic at Maine Med. This all happened today. This on top of her big appointment next Tuesday. Can you say "head spinning"? 

Seth wonders why I am always so tired at night. I really don't like giving him a play by play of my day and we just talk about highlights or whatever else is on our minds.  When he asks again I think I will ask him to look at my blog. (I don't think he ever has) Maybe he will get it then?? ;)

Good News All Around Today

Kailyn seems to be doing really well in school.  Her teacher said that she was a nice girl. She consistently comes home with 3's and 4's on her papers (A's and A+'s), except for spelling, but she has excepted that it is not her strong subject and she will do her best and feel good about that.  She will start Chorus and Cheer Leading within the week. Soccer did not work out, but it was not surprising. She is going to try and earn her "bribe" in other ways. ;)  We went to the Endocrinologist early last week and her A1C was good.  The staff was surprised that we were doing so well considering everything else that was going on.

I have spoken to both the Kindercamp staff and Sam's Kindergarten teacher about Sam.  Both say that they enjoy him and he is doing really well. Just a little loud (we knew that one already ;))  Sam is receiving Reading and Math Title 1 services during regular Kindergarten. We fully expected he would qualify for this.  This is not Special Education, so he is still considered to be going to Kindergarten without any supports. Hearing the info about his behavior today made me feel really good.  He lets me know about the kids that do have poor behavior though. lol A far cry from what we thought would happen 3 years ago.

After calls to the Epilepsy specialist in Boston pleading for an appointment earlier we secured an appointment for 2 weeks from now.  This is so much better than waiting 1 1/2 months.  Her med increases don't seem to do much, but make her tired. Her Neurologist here is nice, but he does not specialize in Epilepsy and is too slow to respond. He also seems to be doing some things backwards.  I expect nothing less than prompt, truly committed service when it comes to dealing with my child's brain and development. With blood sweat and tears (a little dramatic ;) )  she is finally begrudgingly bearing weight on her legs. She hates it, but it has to be done.  Huge accomplishment. :)

I am tired, but I feel good that things are moving forward.  I even made myself an appointment to see the Doctor and Dentist !!  I just need to remember to go to them.

Soccer, Sun, Fun and Feeling Normal

We had a family soccer day today. It started at 8am for Sam and ended at 11:30am with Kailyn.
It may seem like a pretty typical day, but WE are not a typical family. It has taken a long time for us to get to this day. A day without constantly thinking about issues going on with any of the kids.
I can say that I thought about Diabetes, Epilepsy and
Autism for a nano second here and there. (Keira had a seizure during her bottle and Kailyn looked like she might be low once) However, it was NOTHING like it was two years ago when Kailyn was first dx'd with Type 1 D and we were waiting for the sky to fall at any second. We tried to get right back into her normal activities, one of which was soccer, but going to a soccer game was NOT care free then. I can say that today it was and it was FUN!!! We ended up having to cease all extra curricular activities right after Type 1 D Diagnosis. Everything was routine and felt......well.... normal today.

We enjoyed watching our Kindergartner on his first official team. He was out there playing with great confidence and was even instructing some of the other children about the "rules". Something he is a stickler for. He may knowingly break them sometimes, but he calls people out if he sees they are breaking them all the time. A habit we are trying to break. ;) Three years ago at this time he was diagnosed with Autism. He could barely talk then and we had just started to use the PECS communication system to try and figure out his wants and needs. We hoped he would be able to function in society at some level, but thoughts about being on a team, let alone instructing other children, were far from our minds.

Our Third Grader bravely tried soccer again even though it was causing her to have anxiety stomach aches once we got there. We recognized those stomach aches for a brief moment and she got right back out there. Joining a soccer team may seem pretty normal and mundane for most third graders, but for Kailyn it is a huge milestone. Before her diagnosis we were into all the activities and she enjoyed them with ease. Once she was dx'd, anxiety about everything set in and she did not want to do any group activities. She turned a corner this summer in regards to this when I gave her a cellphone so she could attend vacation bible school. I decided that she needed to take the next step and join a team of some sort. We (meaning I) picked soccer. I did bribe her, but I am proud of her nonetheless. She had fun and was showing self confidence by the end of the practice AND she wants to go back!! I am pretty sure that soccer won't be a major part of her life in the future (You never know though), but we made that HUGE step and that is all that counts.

PS: We do have one problem. She does not like how her mouth guard feels. I told her to not wear it and she said that she has to because she wants to be a goalie! ;)