updates

Its been quite a while since I’ve updated. Everything is just flying by and we’re all so busy.

Presley has been doing fantastic. She started school in September, goes for three hours and loves it! She receives speech therapy, OT and one-on-one time with her teachers. She gets out of the car each morning and tells me bye. She plays on the playground with a little boy and she has one little girl in her classroom with her. School is great!


She also received her cuddle swing. We’re working our way into it, she likes to swing in it as a taco. By the way, we got our insurance to pay for all of her equipment. Including her new super adorable weighted vest, from therapro. The vest is doing wonderful. If she starts to flip out, we put it on her and a weird calm comes over her.

We started OT again yesterday and we’re still working on her feeding issues, which are, pretty much, about where they were last time I posted about it. She’ll now take a bite off a soft baked cookie, however, we’re still feeding her purred food and she is still not feeding herself. She is now eating MORE, so her volume has increased greatly.

So that’s about all that’s going on, hopefully, I’ll have time to update more soon!

I haven’t posted in a very long time, so I guess I’m due to give some updates.

Presley’s birthday is August 11th & she will then age out of early intervention services. She’ll start early childhood special education September 8th & will be going to school Monday through Friday for three hours a day.
In school she’ll be receiving speech therapy twice a week. No OT. So we’ll continue doing that privately, until she’s at least eating solid food, herself. Again, she’s still not touching food and eating mostly pureed with the exception of organic snack bars (we call them cookies) made by earths best. They’re still soft, but do involve chewing a bit.

Start school has me a bit stressed out. I’m sure she’ll enjoy it. She loves other kids & had a really good time singing with the teacher during the evaluation.

Speaking of singing, her speech is awesome. She’s doing really great and will repeate almost anything we ask her to say. She’s still putting two word phrases together. The other day she pointed a big tree and said ‘momma tree’ then pointed to a small tree and said ‘baby tree.’ It was adorable, of course. She’s counting to thirteen and knows some Spanish. She knows all of her colors and letters & is improving greatly. She remembers things that I’ve forgot about. She’ll point something out from trip and it boggles my mind that she remembers.

In other news she’s eligible for ‘respite’ care. Basically, respite care is to give the fulltime caregiver a break. So my friend Anna is willing to be the ‘respite’ caregiver & she gets paid for it, so that’s also pretty sweet.
She’s also on a waiting list that is something like 30 years long. In case, as an adult she isn’t capable of taking care of herself. I cant remember the name, all I remember is that she’ll have to be considered ‘mentally retarded’ (that’s the words they used) by age 6 to qualify for it. With the way she’s improving I think that by age six most of this will be a distant memory. Hopefully.

So that’s about all that’s going on. I’ll be doing school shopping for my three year old little girl. Buying a backpack, clothes and all the goodies that is involved in school shopping. I get to take a ‘first day of school’ picture soon enough and have to worry about her while she’s gone during the day. Its all so crazy to me. A THREE year old in school! She could even ride the BUS! Though, I’ll be driving her, still crazy.

Developemntal disorders assessment clinic dianostic evaluation report! *phew!*

I lack the skills to take this whole report and make it into a cute PDF file, so I'm going to summarize it!

Tests Administered:
Autism diagnostic interview (ADI-R, partial)
Autism Dianostic Observaiton Schedule (ADOS, Module 1)
Caregiver-teacher report for (CTRF)
Child Behavior checklist (CBCL)
Direct Ovservation
Developmental Questionnaire
Infat/Toddler Sensory Profile
Scales of independdent behavior (SIV-R)
Social communication aquestionnaire (SCQ)

Results:

Social Understanding and Functioning
"Presley was clearly attached to her parents and demonstrated an interest in others. Presley was very affectionate and demonstrated a desire to maintain the positive attention of each person in the room."
"To do so Presley frequently showed items of interest to adults she pointed and visually referenced items of interest as well. She shared her excitement over events by directing facial expressions toward the examiner."
"Presleys eye contact was direct but inconsistent and no sustained. She referenced."
"Presley was emotionally expressive during times of self-directed activity during the evaluation. She directed her facial expressions at adults and her tantrumming behaviors were supplemented with various verbal and nonverbal behaviors (i.e stomping her feet, adopting a "sassy" tone of voice) when she did not initially get her way."
"Once joint-attention was established, however, Presley often appeared to not know what to do next and would often abandon the engagement and move on to the next person. Presley demonstrated increased difficulty with shared agenda. She often avoided and abandoned tasks presented by others."
"Overall, Presley demonstrated social interest and some foundational social kills. The quality of her social overtures to others was high. However she did not exhibit the ability to sustain engagement with others for several exchanges and exhibited a high rate of abandonment."

Speech and Language/Communication
"Based on clinical observation, Presley's receptive language skills were significantly delayed for her age."
"Distraction from or avoidance of sensory input frequently compromised her receptive language abilities."
"Presley responded to color labels and size labels (big/little), yet struggled with response to other early descriptors, as well as a range of nouns, verbs and locative words."
"Presley presented a vocalization to single-word use level. Limitations with expressive vocabulary, were noted, although Presley's strengths rested with the varied word types present as well as coordinated gestural use, facial expressions, and strong intent with vocalizations and verbalization's."

Several language samples were taken during ADOS, when playing with bubbles:
-No
-All done
-Pop
-Woa
-Ooo
-Eye (pointing to eye)
-True
-Blue
-Green

While playing with a balloon:
-A two
-uh-oh
-one two
-one two three
-no
-right there

"Though some of her speech may sound as if she is repeating something she has heard; Presley exhibits true words with typical prosodic patterns. During the evaluation, she played with intonation of her jargon and babble. Her vocal play is developmentally appropriate and helps her learn appropriate intonation for true words. notable was her elevated pitch, which may have been due to structural and /or neuromotor differences, including her small jaw, low oral muscle tone and sensory seeking patterns."

Stereotyped of repetitive behavior and limited patterns of interest
"Throughout the first half of the evaluation, Presley kept a small ball in each of her hands. She had such extreme difficult separating form them that she did not set them down to do other activities, even when motivated a snack."
"Presley exhibited minimal play developmental for her age. She engaged in some cause-and-effect play with a jack-in-the-box and pop-n-pals. She demonstrated emergent functional play, feeding a baby doll. Much of Presley's play during the evaluation involved exploring her environment and she demonstrated minimal incorporation of objects into her play."

Sensory processing and musculoskeletal functioning
"Results of the infant/toddler sensory profile, suggested that Prelsey exhibits deficits in sensory integration and modulation. Scales for low registration, sensation avoiding, low threshold, general sensory processing, tactile processing and vestibular processing were in the "Definie difference" range. Scales for sensory sensitivity visual processing, and oral processing here in the in "Probable difference" range. The only scale for which Presley's scores indicated "typical performance" was sensation seeking."
"In regards to musculoskeletal functioning, Presley was observed to have low tone and preferred "W" sitting."
"In the clinical setting Presley was observed to respond well to deep touch, which seemed to have a calming and focusing affect on her. during the evaluation, she especially enjoyed ticklin from the examiner and rough and tumble play."
"Activities that combine acceptable, non-threatening tactile information alone with proprioceptive input have a calming effect on presley and can help her relax. Further, Presley responds better when given periodic breaks during her day in a n area with decreased sensory information in order to calm and focus herself."

Adaptive Functioning
"Results of the Child behavior checklist (CBCL), indicated areas in which Presley is functioning differently than her same-age peers. Presley's behavior was rated in the "clinical" range (above the 97th perecentile) or "borderline clinical" (between the 93rd and 97th percentiles) for several scales, indication that her behavior is more challenging and more of a concern than would be expected for her age."
"Elevations on the withdrawn sub scale reflect the concerns related to autistic symptomatically that prompted the current evaluation. Elevation on the attention-related scales is likely related to Presley's engagement in her own (preferred) activities and her sensory seeking behavior. elevation the on the aggressive and oppositional scales may reflect a strong-willed temperament, but may also be in part related to Prelsey's language difficulties."
"Overall prelseys adaptive behavior is in the "very limited" range. Her skills are in specific ares of adaptive behavior, as compared to same-age peers, where generally consistent across domains, with the exception of motor skills and community living."
"Thus, Presley exhibits deficits in skills required to complete age-appropriate everyday tasks, and she requires extensive support in order to successfully manage activities of daily life."

Diagnostic impressions
"Presley demonstrated some social deficits, primarily difficulty with shared agenda and an inability to sustain interaction with others. However, her interest in others and the amount of time she initiated interaction with others is unlike the social behavior a child on the autism spectrum. Presley exhibited strong social motivation and interest. Diminished play development affected quality of interactions; as well, making it difficult sustain interaction with others. Though she demonstrated decreased capacity to incorporate objects into her play, Presley engaged in a nice imitation of adult examiner behavior with toys. She initiated joint attention by showing objects to others but did not consistently respond to others' initiations toward her.
Based on clinical observation, Presley demonstrated delayed receptive and expressive language skills for her age. Overall, her expressive language was driven by a desire to get her needs and wants met. She became more insistent if her requests were not initially met and she consistently got the attention of the person with whom she was communicating. presleys comprehension of simple directions was inconsistent and hindered by task abandonment and difficulty with shared agenda. She successfully and naturally combined verbal and nonverbal communication. in addition, Presley reasoned well to demonstration and prompting from examiners."

"Presley exhibited sensory seeking behavior."

Final diagnoses
"Overall, Presley's developmental profile appeared uneven. there were some patterns of Concern related ot the autism spectrum. A continuing concern is Prelsey's limited ability to sustain reciprocal interaction with others, especially if they activity is of low interest to her. Presley's language skills are uneven, but developing in a positive direction and she responds well to intervention. It is uncertain if her fixation on particular objects would remain present if sensory processing and play skills improve. Presley has respond well to previous intervention and recently blossomed. Many of the more concerting behaviors with regards to autism that Presley previously exhibited are diminishing. Scores on the ADI-R, ADOS and direct observation suggested that Presley does not meet criteria for a diagnosis of an autistic disorder. Therefore, at this time, it appears that there is not a reason to assign an autism diagnosis for Presley. If, however, the question of autism persists in the future, the parents may choose to pursue further diagnostic evaluation at the time.

Axis 1 Diagnosis: Rule out PDD
Axis 2 Diagnosis: Developmental Delays
Axis 3 Diagnosis: Sensory processing disorder

4/26 pre-school

I started the long process of enrolling Pres in the pre-school special education program with our county’s schools. Tomorrow Britton and I go to view actual classrooms.

Last week I met with everyone to start the paperwork rolling. We have to have her do several evaluations over the summer. Including, a developmental evaluation, a medical evaluation, a OT observation, hearing test and an speech evaluation. I’m not looking forward to making her do these evaluations, as usually they don’t go well. Mostly its her screaming and wanting out of the room, growing board or just frustrated. Hopefully these wont be so bad.

Of course she is talking a load more now. Starting to put two compound words together and mimicking the heck out of us.

Testing.

We had Presley’s testing today. It was long, thorough and left us with out an answer, once again. I do however feel a more adequate assessment was done.

First they played with Presley. Getting her to engage and interact and mimic. Most of which she didn’t do. She was actually in a really good mood and got very attached to some toy balls which she wouldn’t drop for the rest of the assessment.

Next she went upstairs with the therapist to the large and well stocked OT room and played her heart out. Living it up on the swing and tent. Meanwhile, we answered questions about how she reacts to situations, what type of stimuli she prefers..etc.

Then we finally met with everyone in a large conference room to discuss the ‘diagnoses.’

During the first part there was a two way mirror, I was told therapist would be watching on the other side. I had no idea it was like 15 people back there watching us! They all had something to say. A lot of medical jargon was thrown around. In the end they gave her the ‘diagnosed differed’ outcome. Meaning, they don’t really know. While she has a lot of Autism characteristics, social she is more advanced and engaging than an autistic child. However, she has a lot of ‘red-flags’ (for instance, she had a spike in head growth around 16 months. Apparently a portion of autistic kids have the head growth spike at the same time.) One of the psychologists was leaning more towards autism, the other leaning more on the fence. So if she gets worse, stays the same or doesn’t improve much we are to see them in a year. When Presley is a three and half.

Its not that I’m disappointed. I don’t WANT my child to have autism, but I know that something isn’t right. I just want an answer.

They said that she was really unique, in the sense that they’ve never really seen a child with her ‘syndrome’ (my word for it) and of course they suggested that we have the genetic testing done. Which others have suggested, I’ve just strayed away from it. It makes sense to get it done, so I may actually finally break down and do it.

So I guess we’ll just continue to call it Presley’s Syndrome, because apparently it doesn’t have a name…other than developmentally delayed.

First words!

Presley now calls me momma and her father, daddy! I know everyone says its awesome to hear your child call you 'momma' or 'daddy' but i think its way more awesome for me to hear it. I've been waiting for so long. To get our attention she calls us by name and shows us things.

Speaking of words, shes really into saying numbers, letters and colors now. She can properly identify yellow, red, purple, black (her favorite) and pink. She points out the color black everywhere, including our dog. I would say she now has at least 25-30 words and again, i never thought i see the day!

Updates.

We got our packet in the mail for the Autism testing about a week ago. I've finally managed to get everything together and answer all they're packets. I got one of Presleys therpist to go over all the paperwork to make sure i checked everything off right. I've also managed to get all the copys of previous testings, MRI, Feeding clinic, Previous Autism testing, Sensory profiles and load of Early intervention stuff. The packet i'm mailing them back is at least two inches thick. I think i'm also going to put a note in there about this blog so they can at least view some of the videos.

I'm happy to report that Presley is using more words. We cant get her to say them again, but it still interesting her hear her say things, even it if it's once. For instance she's said "hawK" and "deeR" and during a therapy session, when Auntie Jessica was here she counted to nine! NINE! Thats such a huge deal and i'm so proud of her. Now when she gets angry she counts to three.

With a bit of back and fourth i've managed to get her a weighted vest and swing through insurence/early intervention. I've picked out a taco swing because she digs deep pressure. Its basically like a hammock, she can lay in and swing. The weighted vest is just like it sounds and has the same deep pressure affect and keeps her centered.

Brittons mother, who runs an in home daycare reported that Presley has been interacting more with the other kids. His mom says that she's noticed a big difference in her when it comes to interacting with the other kids.

I'm so proud of my little squirt!

running in circles/teeth grinding