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.

Some of APRIL VACA

Vacation for us was trying to get Kailyn through her Birthday party without being ill and then dealing with illness the rest of the time. At least one of my three children have been sick each day since April 7. That is fifteen days if you didn't feel like counting. Kailyn was throwing out low blood sugars and ketones for three day straight, Keira is not sleeping and seizures reared their ugly head again.  I am getting sick of it. No pun intended. But, thanks to the B-day party, Art Camp and Grammie and Grandpa being able to entertain the kids I think they had a pretty decent time. Sam did get out with friends once, but no friends or cousins over. It did not help that they think it is summer. This wacky weather makes them think we can go to the beach and actually swim in the water ;)  Ouch! Here are a few pictures of them learning to do their Ripsticks. Huge hit that they got for Christmas. Sam is so proud that it says for 8 years old and up and he can do it. :)  They started out going around the island in the kitchen and progressed to making it outside in Grammie and Grandpa's driveway. I am hopeful that summer vacation will be much better and I will be able to leave the house with them much more often.

 I LOVE the tongue!! He always does it when he is concentrating doing something physical. lol

I CAN DO IT!!

The only time Keira has gotten out is to the Doctors and to get the kids at camp. This is the only picture I have of her during the week. We did go outside, but not in public. What a nasty bug they got!! 

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. :)

CAKE BOSS BIRTHDAY

You Can Be A Type 1 Diabetic and Enjoy

Decorating Cakes Too.

Kailyn's favorite show and one of her favorite hobbies among MANY other

 things is baking and decorating. Just to clear things up, yes, you can have sugar and be a Type 1 Diabetic. A Type I Diabetic needs to eat the same healthy lifestyle as a normal child and that includes treats once in a while. ;)

She wanted a cool party that incorporated the Cake Boss methods.

I helped plan (Thanks to Pinterest) and her Grammie made it happen.

I helped pick out material that was cool for the tween set, picked out the cake to be made, wrote their names on hates and aprons etc.. I was the planner.

Grammie sewed all of the tiers for the aprons. Made the cakes, learned how to do everything and then did it. Kailyn is lucky to have a Grammie like her.

SO, Kailyn had her dream birthday party and is now exhausted.

A ton of Type 1 Diabetes stuff (illness/large ketones/lows) went on this last week, but the party went on. (A whole other post I don't want to relive)

NOW she has memories to last a lifetime.

Here are some of the pictures:

KAILYN'S CAKE BOSS PARTY!

Living with Autism Month

     It is Autism Awareness month, according to the world. Last year, at this time, I had one child diagnosed with ASD (Autism Spectrum Disorder). I was wondering about my 1 1/2 year old, but she was on track for a while. Even ahead of schedule at one point, much to my relief. Fast forward to now. Thirty percent of children with autism have seizures. Keira is one of those thirty percent.  We live Autism every day. We don't need a calender to remind us that it is happening because we are living it. Two of my children are the 1 in 88 that are diagnosed with ASD. One is a girl. We are aware of it and it effects our lives considerably. Sam is doing wonderful because of the early intervention services he received and because we held him back a year in school. But, he still has trouble with socialization, social rules/cues, non-verbal/verbal reasoning and understanding of overall speech.
 
     After getting back a report from Boston about him we decided he needed more intervention from the school. He is actually very intelligent and scored above average in many areas. Spatial and Math being 2. His scores on one test showed he is average and above average in all areas. A different test called the DAS-II showed us more. The verbal and non-verbal areas.

Keira's scores were the same as the testing that they did in Maine. Less than 1 percentile in Expressive and Receptive language. She is also very good in the Spatial area. Those were the same scores Sam had at her age, but he got extensive early intervention (ABA) even later than her. We hope that with her even earlier intervention she will be where Sam is when she is 7. She has more of an obstacle because of the Epilepsy and the feeding tube that resulted from that.

     Here is more info on the Autism study that we participated in last month at Children's Hospital Boston. http://lifeistwosweet.blogspot.com/2012/02/never-ending-autism-study.html
  
     Is Sam cured of Autism? No. Is he leaps and bounds from where he was? Yes. We are trying to stay on top of every major problem we encounter to make sure he becomes the best person he possibly can be. We will do the same with Keira and Kailyn. All three have hidden illnesses. Meaning, you can't tell by looking at them that they are battling Autism, Epilepsy, Type 1 Diabetes etc.. We don't sweat the small stuff and pick and choose our battles. It is very exhausting at times, but it is well worth giving it everything we have.

Here are facts about Autism to help make the world more Aware.
http://www.cdc.gov/ncbddd/autism/facts.html

In a Sing Songy Voice

Kailyn-"I have a poof like Snooki"!  Me turning my head quickly. "Where did you hear about her? K-"I saw her on Cake Boss" (PG) One of her favorite shows she is allowed to watch. She also learned about the fist pump in that episode. I have seen it and it was fine.

Kailyn has been trying out new hair styles. Earlier this week it was a pink hair streak with glitter. We went to snip-its to get their hair cut (Her and Sam) and I owed it to her from a LONG time ago. Nothing I am allowing on a regular basis. She apparently got a lot of compliments on her pink/glittered streak (Including teachers), which did not help with me telling her it had to be washed out.(which she did do).

She got her hair feathered like all the other girls in the school. (Not the 80's type of feathered. An actual small hot pink fake feather) But, looked a little too Cyndi Lauperish for my liking today. She was so proud of her hair style that she did all by herself (a modge podge of a back pony tail, with the feather and the front of her hair hanging down. It was tucked behind her ears so her earrings would show) and her outfit. Maybe it's the growing up and finding her own style thing that bothered me more. She did not look bad, just old!! I liked when I could lay out her adorable little dresses and tights to wear without her contesting my choice. Like she never had an opinion. ;)

On the other hand, she did ask me, "I thought Snooki was the one that was voted the sexiest woman alive?"-Haha  Oh the joys of trying to keep your tween naive. lol

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.

Pure Joy is getting a bunny!

You have wanted for 3 years.

She started in on me when I was pregnant.

She was 7. I told her 10 years old.

I never thought she would turn 10. (In a month and a half)

She was told she would be responsible for her rabbit entirely.

I am not a huge animal lover, but my kids are.

She earned all the money to get the supplies and the rabbit.

The nice rabbit man gave her one of the gentlest bunnies he had.(Did not make her pay)

(I have no idea what kind. Just that it will be as big as my Mom's

dog Daisy. 8 pounds)

The bunny will stay inside until it gets warmer and then will stay in

a hutch out in our garage next to the heated side of the wall. She is too

young to be outside yet.

So: Introducing

Holly

The newest member of our family.

And her Mom:Kailyn

 Apparently, they were worried she would get lonely so they fell asleep in the Playroom. Sam did not find his accommodations very comfortable for long and woke up to move to the couch. The new unfinished playroom chairs just did not cut it. I then whisked him upstairs into his own bed. I then went and dragged Kailyn up to her room. Holly is in the cage with the blue blanket over it and a little opening.

Here's to hoping they calm down about the rabbit before vacation is over. ;)

A Big Thank You to Grammie and Grandpa for helping her research and taking her shopping for the supplies: I think ;)

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.