SO frustrated!!

Turns out the big delay in getting OT started is the insurance. They don't want to cover OT for "just" sensory issues, they prefer for there to be fine motor skill delays to cover OT. Apparently it doesn't matter that an occupational therapist feels Brooklyn NEEDS OT twice a month for sensory issues. It doesn't matter that she's having massive meltdowns, if she doesn't have fine motor skill delays it pretty much just sucks to be here.

Want to hear the kicker? If she were diagnosed on the spectrum they'd approve it. Why? Well, our kids have medicaid. (Yep, we can't afford the crappy medical through Joe's work; and even we could, it's crappy and we'd have to pay a minimum of 20% of all the bills, so our kids are on medicaid. If you feel like being judgmental, please keep it to yourself). Why is having Medicaid an issue? Well, Medicaid in Washington state was recently sued for not providing adequate services to children on the Autism Spectrum. So, right now they're doing double time to make up for all their screw ups. On top of that, GETTING the evaluation to diagnose Aspergers has been next to impossible. Why? Because we basically have to prove she HAS Aspergers before they'll approve the evaluation.

Now, that really doesn't make sense to me. We have to PROVE she's on the spectrum before they'll pay for the evaluation to diagnose she's on the spectrum. How does one prove she's on the spectrum WITHOUT the evaluation? Because that's the problem we're having. You see, our regular pediatrician (whom usually I adore) refuses to consider anything other than ADHD. Our second opinion pediatrician was more willing to consider the possibility of maybe something else going on (the 13 page Asperger's check list filled out with our main concerns helped some as well). Our second opinion pediatrician referred us to behavior modification therapy, which is where we are now. Do you know what that's gotten us? It's gotten us what is turning out to be a completely useless referral for OT and another medication. Yes, my 5 year old little girl is taking TWO medications every day. If you thought I felt like shit just giving her the adderall, giving her guanfacine (Tenex) makes me feel twice as worse.

We've had to change Brooklyn's therapy time around due to her old therapist leaving and trying to find a time with the new therapist that works around the school schedule. So, we're finally set with 4pm on Mondays. Her new therapist seems really great, but I have to admit I REALLY miss Cindy, the old therapist. She was SO great with Brooklyn, and I really liked her too. The new therapist, Amanda, isn't bad. But, I don't have as much of a connection with her and I'm not sure Brooklyn does either.

Anyways, what I was really wanting to get to is this, http://www.cdc.gov/ncbddd/autism/hcp-dsm.html which is the Center for Disease Control diagnostic criteria for Autism Spectrum Disorder. My notes about Brooklyn are listed in purple.

Diagnostic Criteria for 299.80 Asperger's Disorder

1. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. 1. 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 (Brooklyn does not like to make eye contact all the time, especially if she is feeling any strong emotions)

1. 2. failure to develop peer relationships appropriate to developmental level (I have noticed that Brooklyn struggles with her peers. She does pretty well with her siblings, whom she's with 24/7, she does well with Asante, her 20 month old cousin, and she adores her new baby cousin. But, she often has 1-2 kids in her classroom that she's "friends" with. I need to touch base with her teacher and ask about this).

1. 3. 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 to other people) (Brooklyn will usually tell you about things that make her happy/excited)

1. 4. lack of social or emotional reciprocity (Honestly, I'm not 100% sure on this, so I'm not going to say anything either way)

2. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

1. 1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus (From what I can tell, Brooklyn isn't "obsessed" with any one type of thing)
   2. apparently inflexible adherence to specific, nonfunctional routines or rituals (Brooklyn tends to have less meltdowns when we stick to a specific routine. She also does well if I'm able to explain the days plans to her, "first we're going to do this, then this, etc")

1. 3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements) (I haven't noticed hand or finger flapping or twisting, however Brooklyn is a spinner. She's often spinning in circles whenever she can)

4. persistent preoccupation with parts of objects (Again, this is something I haven't noticed, but I'm going to go with no)

3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning. (YES! Out side of her siblings she's not very social, she qualified for occupational therapy so that should be a sign right there. It's effecting her abilities in school. She's able to meet the expectations of the teachers, but they skill level they're asking for at this point is far below Brooklyn's actual skill level. She also won't communicate with the teacher unless she ABSOLUTELY has to and even then it's kept to a minimum)

4. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years). (If anything Brooklyn's language skills were VERY early developed)

5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood. (Brooklyn has always been fairly independent and is very bright)

6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia. (Brooklyn doesn't meet the criteria for PDD or Schizophrenia)

Symptoms in girls, again my notes on Brooklyn are in purple.

Social Symptoms

A girl with Aspgerger's may exhibit the following social symptoms:

• Appears excessively shy or avoids interacting with others or making the first move socially (I can't tell you that I've EVER witnessed Brooklyn make the first move socially)
• Seems uncomfortable during conversation and may struggle with eye contact (Brooklyn doesn't always like to make eye contact, sometimes she does, but it's very much not consistently)
• Usually has only one close friend at school (in pre-school Brooklyn had ONE friend. I need to touch base with her teacher to be sure for her currently classroom)
• May play appropriately with toys and engage in pretend play or may focus on organizing objects or toys (Brooklyn really likes to play with her My Litttle Ponies, and generally the pretend play is mimicked from the TV show)
• Often shows empathy and compassion but may be confused by non-verbal social signals (Brooklyn tends to show empathy and compassion when encourage verbally)
• May have difficulty fitting in with peers due to clothing and hairstyle choices (This really isn't an issue right now as she's 5. But, her clothing choices are out there, LOL)

Communication Symptoms

The way an AS girl communicates may also be different from her peers:

• May have an exceptional vocabulary (Brooklyn tends to speak very well)
• Tends to mimic rather than providing natural responses (Honestly, I'm not sure on this one)
• May converse in predictable, "scripted" ways (Not sure on this either)
• Seems to struggle with non-verbal aspects of communication, such as body language and tone of voice (Not sure on this either)
• May use odd inflection (Not sure on this either, I haven't noticed it, so I'm going to say no for now)
• Appears to have difficulty dealing with unexpected verbal responses (I don't know. She's 5 so not all of her conversations even with her siblings or with her daddy or I are very normal.)

Behavioral Symptoms

The behavioral symptoms of Asperger's in girls may be very different from those in boys due to inherent differences in emotional processing:

• Less prone to act out physically or aggressively (Brooklyn does react aggressively, but that's only been towards her brother and younger sister, usually poor Aiden is the target though. He's great at antagonizing her)
• Intense focus on a particular subject, often involving animals or classic literature (I haven't noticed anything she's "obsessed" with, but she does have her favorites)
• Appears anxious when there are changes in routine (she is less prone to meltdowns when we stick to a routine and she's prepared for what's coming next. I usually plan out our day with her so she knows what's going to happen next)
• Practices rituals that appear to have no function (I haven't noticed anything like this)
• May play with dolls or toys well beyond the typical age for these items (She's 5, so dolls and toys are still age appropriate)
• Appears to have attractions or aversions to sensory stimuli, such as textures, foods, sounds, or visual patterns (Brooklyn is a sensory seeker! Spinning, touching things, being squished, bumping into people/things, etc)
• May engage in limited self-stimulating behavior, such as hand flapping, rocking, spinning, or shifting from foot to foot (She is a spinner!)

Physical Symptoms

AS also manifests itself in the way a girl carries herself:

• May have difficulty with fine or gross motor coordination (She is a bit clumsy, often tripping over her own feet or running into things, even walls)
• May become easily lost, even in familiar surroundings (I haven't noticed this, and she's only 5, so she doesn't go anywhere without an adult)
• Has an odd posture (I haven't noticed anything yet) 
• Resists physical games or sports (I'm not really sure. She was talking about a game in PE called hula hoop bumper cars and she said she liked it)