I have seriously been slacking

So many changes, and no blog updates. OK, here we go.

As of last Thursday October 18th Brooklyn is no longer on ANY ADHD medications. It's been interesting to say the least. It doesn't seem that her school behavior is effected much at all. We have had very little communication with her teacher, and that's VERY upsetting. The school psychologist is GREAT, she's working on collecting information (from her teacher regarding the classroom environment, from the PE teacher regarding that environment, from the music teacher regarding that environment, and the school psychologist is going to observe Brooklyn on the playground). We're hoping to have an initial IEP meeting scheduled soon.

Last Friday we took the kids to a Portland Trailblazers basketball game. That was intense to say the least. Day 2 of no medication and a SUPER stimulating environment. Overall Brooklyn did really well. We had to remind her a LOT to calm down and respect the people around us. Thankfully there was no one in the row behind us (which also happened to be the top row in the entire arena, LOL) so we were able to let her get her wiggles out there. Leaving was the hardest part, we basically had to drag her kicking and screaming the entire way to the car.

The dragging and kicking and screaming seems to be a common way to end things. Every day when she gets off of the bus I have to drag her home kicking and screaming. She wants to be able to swing her backpack and jacket around (not caring about whether or not she hits people) and run in front of everyone. However, there are a LOT of kids getting off of the bus, there's ONE bus for our entire apartment complex. Plus, we live near the back of the complex and the bus stop is at the front of the complex, that leaves a decent walk back to our apartment where she can't just be running around acting however she wants.

I've seen an upswing in aggression at home (she seems more prone to hitting when she gets mad), but we've also been able to find ways to help calm her down. The most commonly used solution? Climbing the walls :)

This is our entry way, it's just wide enough that Brooklyn is able to "hang" like a bridge between the walls

When she doesn't quite feel like "hanging" between the walls, she does this, she loves being upside down :)

Yesterday (Monday October 22) was Brooklyn's field trip to the pumpkin patch. I was really worried about how she would be, especially with me volunteering to go along. She did AMAZINGLY well. I did my best to watch her interact with her classmates... She really doesn't do that much at all. She preferred to talk to me or no one at all. She did run around and giggle with the other kids, but she didn't actual SPEAK to any of them. It wasn't like she was playing WITH the kids, just NEAR them.

She also had behavior therapy yesterday, she seemed to do really well there as well. Her new therapist is growing on me, although I still prefer her old therapist. I WISH Cindy hadn't moved, she was amazing, and Brooklyn really bonded with her quickly. Her new therapist isn't bad by any means, but it's taking Brooklyn longer to establish any type of bond. Amanda (her therapist) says that Brooklyn does interact with her when they're in the room together, but when I'm there Brooklyn does very little interaction with Amanda.

Tomorrow is our 2nd OT visit. I'm excited about that. I need to write up my list of questions/concerns/ideas for the OT. I also need to remember to ask the clinic about whether or not they've heard from our insurance about approving PT and OT for Alayna.

I feel confident in saying that I don't think Brooklyn ever had ADHD and that I was right all along when I approached our regular pediatrician about Sensory Processing Disorder. However, I'm not going to remove the ADHD label from Brooklyn just yet. You see, schools here don't consider SPD as a reason to give an IEP or make special accommodations. So as far as the school is concerned she has ADHD and SPD. Hopefully after the IEP meeting we'll be able to push our insurance to give us the Autism evaluation.

Updates for the girlies!

Brooklyn: We saw the doctor today. We discussed Aspergers, and he said my notes and research are impressive and will be very helpful for him. We said that he thinks we're doing a great job between the behavior therapy and OT. He wants us to give OT at least a month and see how that effects Brooklyn's behavior.

He also said that he agrees we may want to pull back on the medications. So, we're going to start slowly removing the guanfacine starting tomorrow through next week. On Thursday we're going to touch based with the doctor about how that's going and then discuss how we want to go about backing off on the Adderall. We'll see how she does and if we have any behavior concerns, especially with OT as if the behavior issues are related to the sensory stuff.

He also said that he thinks we should consider an IEP for Brooklyn. Mostly because her being withdrawn in school IS an issue that needs to be addressed. And that the OT at school should be able to help with the twice a month private OT. He suggested that we consider requesting one-on-one teaching for at least an hour a day, and one-on-one reading groups and more very small group activities.

So, that's the plan for now. Still unsure about the Aspergers testing, but if we can rule out ADHD once and for all (which we may be able to do with everything we're working on) we can then push for Asperger's more easily as we've already begun ruling out other things.

Also, the OT who did Alayna's eval (which will be explained below) is the same OT who will  be seeing Brooklyn starting next week. This is great because she got to see Brooklyn in action. Brooklyn was completely well behaved in the first half, but went crazy once they went into the gym and Brooklyn could swing, slide, spin, and jump to her heart's content.

OK, onto Alayna. OT went great. Alayna did very well in the fine motor part of the evaluation process. I filled out a sensory profile during that time. After that we went to the "gym" where the girls got to play on th mats with swings, slides, a ball pit, trampolines, and larger shape foamy things. Brooklyn was in her element there, LOL. Alayna, not so much. It's so interesting to watch the girls as their sensory issues are EXACT opposites. What Brooklyn is always seeking, Alayna is always avoiding. While the OT worked with Alayna with all the sensory things, an intern asked me more questions.

After everything the OT and I discussed what our main goals for Alayna are. We both agreed that Alayna's sensory issues with spinning, behind upside down, and being off balance aren't really enough to effect her in life. She will be able to avoid those things without interfering with her day to day life. Our biggest concerns are in the goals are in the areas of personal responsibility and self care. We discussed that our biggest goal is helping Alayna reach her full potential in life.

We are heading out for Alayna's initial IEP meeting. We've written up our main concerns, and some suggestions of modifications that can be made for her. I think we're also going to request Brooklyn's IEP assessment on Monday.

A Different Girl- What Aspergers Syndrome Means to Me - YouTube

A Different Girl- What Aspergers Syndrome Means to Me - YouTube:

Listen to this girl who describes her own issues with her own diagnosis with Asperger's syndrome. This is hard to use as an example of symptoms of Brooklyn. If you know my family and have met Alayna, however, you can see some of the randomness, body language, vocal rhythms and overall communications processes she uses. That's both concerning and somewhat relieving because, with her diagnosis of Peter's Plus, there are diagnosed developmental delays but no one can tell us what set of delays are present. While I am not suggesting Alayna has Asperger's Syndrome, I do think the autism spectrum is appropriate, now more than ever.

I would like to see this as Brooklyn gets older to see if she produces this level of both intelligence and inability to control her actions. It almost reminds me of Tourette Syndrome, but without the tics. In this way, the "tics" are just a jump from one action to another. Like drawing a line and your hand gets shaky so you waver to one side or another.

I can conceptualize things better when hearing them, and I can visualize what I am saying if I can see myself pictures of examples. This is helping a lot. Thank you, YouTube.

Amazon.com: Used and New: Asperger's and Girls

Amazon.com: Used and New: Asperger's and Girls:

Morgan found this book to try to help find answers to Brooklyn's mannerisms and behavior quirks that are conflicting with her ability to interact with others. The social aspect of her problems is the most important at this point, at least to me. I am not so worried about her milestones, learning processes or motor skills. She can do most things she sets her mind to. Talking to others and sharing in a positive manner, however, are examples of things she just can't grasp well enough to be consistent.

Hopefully this book would give us a better idea of how to identify a disorder like Asperger's. I don't believe we're going to find a definitive diagnosis this way, but I agree we will get a better idea of the symptoms and how to approach and hopefully nullify the symptoms of what's really going on. We do want to get to the root of the problem and take care of what's really affecting her behavior, but you don't find the roots by looking for them first. They're buried and hiding. Behavior issues are like blackberry bushes: you have to start at the end of a vine (obvious symptoms) and trace it back to the base (how the symptoms connect), then start digging out the roots (any medical or psychological foundations creating the symptoms).

We're not rich. We're not even financially secure. So we have to do this stuff on our own. I don't expect Medicaid to do everything for us. Nor do I expect the public welfare system to pay for all the research when I am perfectly capable of doing research myself. If all we do is take books like this, get the premises of our claims solid, and bring that to a professional to weed through and come to a plausible conclusion, we've saved time for the professional, which saves money for Medicaid, which saves money for the state and federal budgets. Isn't that how we can truly fix the medical industry? Maybe that's just me being optimistic, though.

Criteria for Aspergers, and why I think Brooklyn fits it

Diagnostic Criteria for 299.80 Asperger's Disorder, this was taken from the CDC website, http://www.cdc.gov/ncbddd/autism/hcp-dsm.html, everything in purple is my notes/observations about Brooklyn. My husband is going to add his own notes in at some point, I'll make him use a different color :)

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. However, a lot of my research about Aspergers, especially in girls, says that many times girls are more interested in "fantasy" tpye things. Which are more often considered "normal" for girls. It's only realized that it's an issue when they child gets older and is still interested in these things. Brooklyn loves My Little Ponies, they are her go-to toys and it's her favorite TV show to watch over and over on netflix )
   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. She also twirls her hair and rubs the back of her head into things, which is why we've cut her hair so short)

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. Symptom list was taken from this site: http://autism.lovetoknow.com/Aspergers_in_Girls

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! And she's always moving in some way or making some type of noise)

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)

Meltdowns....

We had meltdowns all weekend. I think it's due to all of the changes lately, one half day of school just wasn't the best idea for introducing Kindergarten to the incoming students. We have made it part of our bedtime routine to talk with Brooklyn about the next day. What are our plans, what time are we getting up, etc.  This seems to have helped her. Well, last week was NOT a normal week.

Brooklyn went to ONE half day of school last week. So, she had VASTLY different days all week. Monday was different because Joe was off due to Labor day. Tuesday she came with Alayna and I to Alayna's intake appointment at the same clinic Brooklyn goes to. Wednesday the big kids went to a regular full day of school, and then Brooklyn met her new therapist for the first time. Thursday Brooklyn had a half day of school, and Friday it was just Brooklyn, Bella, and I at home. So, all weekend we had meltdown central at the Ryder house. Tears, sobbing hysterically, MUCH more aggression. Nothing I did helped her.

Brooklyn really enjoyed her half day of school last Thursday. She even made a friend, which is kind of a big thing. Brooklyn doesn't always do so well with other kids. She's much more intense than the typical child. Friday afternoon we found out who her teacher is, what sucks the most is that the only kid she made friends with isn't even in her class.

Anyways, I am trying to come up with ideas on how to help avoid meltdowns. Talking her through the plans for the following day every night seems to be helping. But, this last weekend was awful. Lots of meltdowns.

This is the first full week of school on, what will become, our regular schedule. I'm hoping that as she gets used to the schedule, we'll cut down on meltdowns.

****EDIT****
Well, most of the night tonight was full of meltdowns. I'm thinking maybe Brookie was tired and worn out from school, she went to sleep SUPER easy tonight and right on time. We'll see what tomorrow brings.

Amazing news!!

Well, the average person probably wouldn't find this "amazing" news, but to us, that is exactly what it is!

Today was Brooklyn's intake appointment for a new behavior modification therapy. There's a bit of back story that's required before I get into today's exciting news.

*Back story: A little more than18 months ago Brooklyn started behavior modification therapy for the first time. At the time, I had NO idea what to expect or what my concerns actually were. All I knew is that my almost 4 year old was completely uncontrollable. She was aggressive, impulsive, didn't listen, had massive meltdowns at the store, and was like a 120+mph wild ball of energy. The therapist diagnosed Brooklyn with Oppositional Defiance Disorder (ODD). The more I learned about ODD, the more I thought "there's NO way Brooklyn has ODD." You see, Brooklyn was not intentionally defiant.

After about 5 months of this, I went back to our pediatrician, again in tears, BEGGING for help. The therapy wasn't working. As I desperately tried to keep my daughter from tearing down the walls (she instead alternated between shredding the paper over the exam table, jumping off of the exam table, and ripping things from her sister's hands), our pediatrician suggested we consider trying medication for ADHD. This was the first time ADHD was brought up. Previous to this, I will admit I thought ADHD was a bunch of bull poo. I thought it was an over diagnosed excuse for insanely out of control children with crappy parenting. The doctor wrote out a prescription for 5mg of Adderall. 2 weeks later I still hadn't filled the prescription... That was the night that Brooklyn drank about 1/4 of my espresso while I was making dinner. That was also the first time Brooklyn sat still during dinner, ate her food in one sitting, and went to bed without a knock-down-drag-out battle. The next day we filled the prescription.

I can tell you, I INSTANTLY noticed a difference in Brooklyn's behavior. My 120+mph wild ball of energy was now a 60mph ball of less energy. It wasn't perfect, but it brought things down to such a level that it FELT perfect. We stopped the useless behavior modification therapy; 6 months wasted. But, as time progressed, I began to notice that the Adderall was not the magic-cure-all I had hoped. So, back to the pediatrician we went, this time armed with research. Research about Aspergers Syndrome (high functioning Autism) in girls and Sensory Processing Disorder (SPD). Our pediatrician said no way to both suggestions and upped Brooklyn's Adderall to 10mg.

I continued my research online. I KNEW it wasn't just ADHD, there was something else. The more research I did, the more I kept coming back to Aspergers/high functioning Autism. Again, our pediatrician again said no way. You see, Brooklyn doesn't have severe social issues, therefore our pediatrician said it was highly unlikely. So, I compiled more information, printing out a 15 page Aspergers checklist and completing it based on what my husband and I saw daily in Brooklyn. And that is when I made an appointment with a different pediatrician for a second opinion.

And, for the first time, I felt like at least half of what I was saying was being listened to. Again, I was told it was unlikely that it was Aspergers, but that SPD was a possibility. We were referred to a different therapy location for NEW behavior modification therapy. I have to tell you, I didn't think it would do much good. But, it was a starting point. You see, our insurance wont approve of Autism OR SPD evaluations until we can prove that it's necessary. So, we went into the appointment today.

That ends the back story.

Onto today's appointment. We arrived 15 minutes early so I could fill out the MOUNTAIN of paperwork. Mental health history, health history, family mental health history, family health history.... Well, you get the idea. They picked up our paperwork and about 10 minutes later we were called back for our appointment. I explained my concerns with Aspergers and SPD and we discussed Brooklyn while the therapist tried her best to engage Brooklyn (it did NOT happen) and observed Brooklyn playing with Bella and Aiden. Finally, after about 90 minutes the therapist said to me "I am not comfortable making any type of diagnosis after just one visit, but I believe that Brooklyn IS on the spectrum. ADHD is not the only thing going on with her." That would be the autism spectrum. I cried. Not because I was worried or scared, but because I KNEW. And finally my concerns were being listened to. Finally someone saw what I saw. FINALLY!

Finally I could start working in the right direction to getting my daughter the help she needs to over come the bumps along the road of life. This was truly the best news I could have received. Even now, hours later, I feel as if a huge weight has been lifted off of my chest. We have a game plan.

The plan isn't big, the plan isn't fancy, but it's a plan.

1. We will be meeting with a psychiatrist to discuss options for medication for the ADHD, I'd like to consider herbal options as they tend to have much less dangerous side effects than pharmaceutical stimulants. I don't think we'll be able to get Brooklyn off of medication completely any time soon. Without the medication Brooklyn is a mess; that's really the only way to describe her off of her Adderall. But, the hope is that we can find the best fit for her to give her the ability to attend school without any issues.

2. We will be starting therapy with a therapist who works with ADHD and Autism. There are 3 goals here, to teach Brooklyn some type of impulse control, to help Brooklyn be able to function well enough in school to reach her academic potential, and to prove to our insurance company that a full Autism evaluation at either OHSU or Providence is necessary.

3. As soon as school starts we will be requesting a full IEP for Brooklyn, especially an OT (occupational therapy) evaluation, as they would be best able to deal with the sensory issues.

So, good news hearing that our daughter most likely has Autism.

Squishy Baff

My 4 year old got some for her birthday, and tonight we tried it for the first time. My biggest concern was "is that crap going to go down the drain?" Well, it did, but that turned out to be the least of our worries.

It is most definitely NOT a night time thing. The girls needed a bath tonight before bed and they BEGGED for squishy baff. So, daddy and I gave in and we started the bath. Have you ever seen the inside of a diaper? Yea, that's basically what this stuff turns into.

The girls had a blast, but it definitely was a bit too much for Brooklyn. She's having a LOT of trouble settling down for the night. We did our normal bed time routine (pajamas, teeth, bed, kiss the kids, kiss all the stuffed animals, kiss the kids again, give hugs, and tuck them in), nope. Every excuse in the book is being used: I have to go potty, I'm thirsty, I had a bad dream, I thought of great grandma and was sad. (The kids' great grandma died a couple days after Christmas and it was really hard on them).

I think it's going to be a melatonin night for Miss Brookie, because THIS momma needs her rest!

Another step in the right direction

Well, it's KIND OF a step in the right direction. Brooklyn had originally had testing done for Celiacs disease about a year ago. It came back with one normal and one slightly high (I'm not exactly sure HOW the test breaks down, but that's what we were told). That was right in the middle of behavior modification therapy.

Last week we saw a new doctor about a second opinion, I'm not certain that ADHD is the only thing going on with her. The new doctor ordered a new Celiac's test. Today, we found out that the test came back perfectly normal. While it doesn't give us any specific answers, it rules out gluten intolerance as a cause of the behavior concerns.

Today was a pretty good day, only one minor meltdown. My mom took us, my sister, my nephew, and my aunt out to lunch. Brooklyn couldn't decide where she wanted to sit and then finally picked where she wanted, except that someone was already sitting there. After lots of tears and playing musical chairs she was finally content with her place at the table.

We're still playing phone tag with the insurance company. I have to get pre-approval for therapy at the new location and I have to speak to a specific person. Unfortunately he's never available when I call. Hopefully we can get that figured out soon so that we can get an intake appointment started ASAP. It should help us come fall when she starts Kindergarten and we push for an IEP.

Outside of the one minor meltdown, we did have a couple other fun issues. Bella gave herself a blood nose this morning and refused to listen to ANYTHING I had to say about how to fix it. I'm going to try to get the blood out of her green shirt with hydrogen peroxide, but I think it may be ruined. After about 15-20 minutes we finally got it to stop. Brooklyn has this thing with sticking her fingers in her ears, apparently she had some type of scratch in there because she came to me upset because her ear was bleeding. Thankfully it didn't take nearly as long as the nose bleed to stop. However, at lunch she decided to pick at her ear again and start it back up.

Crossing my fingers and saying some prayers that the insurance guy calls us back tomorrow so that we can get things going to get this therapy started!