Sunday, April 29, 2012

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:

"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
"Itsy Spider"
"Where going"
"I did it"
"bye bye"
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.

Sunday, April 22, 2012


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


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!! 


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. :)

Saturday, April 14, 2012


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:


Monday, April 2, 2012

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.
     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.