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.

Jenny McCarthy and Autism

So, I am not a Jenny McCarthy fan. I've never been one, and now that I have a child whom I believe is on the Autism spectrum I like her even less. She's so full of judgement and assumptions about other parents of Autistic children. She doesn't offer support or assistance. She says, either you do things like I did and "cure" your Autistic child, or you're just an attention seeking parent who somehow gets your rocks off by parading around your autistic child and getting people to pity you.

These are older articles, but they give you an idea of where this is coming from: http://leftbrainrightbrain.co.uk/2012/06/14/jenny-mccarthy-autism-moms-fall-in-the-the-victim-role-and-they-are-loving-it/

http://www.time.com/time/magazine/article/0,9171,1968100-1,00.html

Really?? REALLY??

I know a LOT of parents who don't see their child as needing a CURE, they don't view their child as being diseased. And to be honest, the average family does NOT have the resources that someone in McCarthy's position does. How many average American families can afford $100,000 a year to send their child to a special school? How many average American families can have their child's stool samples tested at their whim by special labs? The majority of families with special needs children are at the mercy of the insurance company. Evaluation results are passed on to a board of people who then get to decide if they agree or not, having NEVER met your child. I recently went through this with Brooklyn's occupational therapy evaluation. How can you compile my concerns and Brooklyn's delays in a report and expect that a reader of that report will get an accurate view of my child? Especially when I, HER MOTHER, can rarely put Brooklyn into words.

Anyways, there have been suggestions from the scientific and medical community that there is a great chance that McCarthy's son, Evan, never did have Autism at all. That he really had a childhood neurological disorder called Landeau Kleffner Syndrome. See, Evan started having seizures at the age of 2, so severe that he required hospitalization several times. He also showed developmental delays and different when compared to children in his play group. He also had hand flapping and fixation on specific items (all of which would cause a professional to diagnose him as Autistic). However, Landeau Kleffner Syndrome an also result in speech impairment and possible long-term neurological damage. Evan's seizures followed by marked improvement once the seizures are under control are consistent with Landeau Kleffner. There's also the possibility that Evan just had developmental delays and as he got older, and with the right help, he caught up with his peer group.

I'm not going to get into the aspect of whether or not Autism is caused by vaccines, I have my personal beliefs  based on the information I have the research I've done. I encourage you to make your opinions the same way. Research things, and don't take some celebrity opinions, look for credible information.

My issue here is how McCarthy treats parents of Autistic children, that somehow they are inferior to her because they haven't been able to "cure" their child's autism. I don't know that there is a cure for Autism, I know that many people have had success with lessening symptoms through a LOT of therapy and hard work. Some have found success with diet changes and strict routines. I couldn't tell you if McCarthy's son was ever truly Autistic. I know that McCarthy, as a mother, knew something was going on with her child. And she fought to get answers, for that I commend her. But, at what point does that give her the right to judge and belittle other parents of Autistic children?

Brooklyn is not diagnosed as having Autism, will that diagnosis ever come? I have no idea. Right now I've seen a LOT of changes in her by really focusing on her SPD. Could that be it? Could SPD be our one big hurdle? It very well could be. But, I still want an Autism evaluation, that's really the only way to know for sure. I need a specialist, someone knowledgeable in Aspergers Syndrome specifically in girls, to evaluate Brooklyn. I don't have the luxury of McCarthy to throw money here or there to get the answers I need. I can't just go up to OHSU and say "hey guys, here's $4,000+, can we schedule this evaluation now?" I am at the mercy of an insurance company that has no idea who Brooklyn is to decide if/when we'll ever get that evaluation. I have spent since November 2010 asking for help. If back in November 2010 our pediatrician had listened to me and sent us to an OT evaluation then we would have found out 21 months earlier that Brooklyn did in fact have Sensory Processing Disorder. But, because a doctor decided he knew my child better than me, we were forced to wait. I could have avoided putting my 4 year old little girl on medication if only I had been listened to!

It's so frustrating to read the crap that comes out of McCarthy's mouth. It's not how the real world works. And if she cared as much about other families, families she claims to want to help, she wouldn't belittle and judge them every step of the way. We are all just parents doing the best we can to help our children. What we need from each other isn't judgement, its support. I am very thankful that I've been able to find some amazing groups on facebook filled with other parents who are going through what we're going through. They're there to listen to me vent on our bad days, cheer on our good days, and offer advice and support whenever it's needed. That is a lesson that Jenny McCarthy needs to learn.

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)

9 year old boy with Autism arrested

http://www.connecttristates.com/news/story.aspx?id=805042#.UGHILbJlSEc Here's the article about it so that you can see.

Now, I've heard two conflicting stories about this incident. There's the incident described in the article posted above. There's also a story going around facebook, supposedly written by the young boy's aunt. This is the statement on facebook, from the aunt:
I'm trying to bring attention to my nephew's story. If you could please share it would be greatly appreciated. Any advice you might have is welcomed.

This is Roger Jr. He has Autism Spectrum Disorder. Jr is a victim of police brutality, suffered at the hands of Officer Caulkin of the Quincy, IL Police Department and Quincy ISD. Jr had a meltdown in class at Baldwin Elementary. His teacher responded by calling the liaison Officer, Officer Caulkin, into the classroom to restrain him. When Jr tried to get away, he kicked The officer, who then responded by slamming Jr facedown onto a table. Three other adults held Jr down while the officer cuffed him. Then he was arrested and taken to the Quincy PD to be finger printed and booked. His mother was refused the right to see him while in police custody until she threatened to call her attorney. Jr is only 9 years old. Please share this in hopes to bring attention to Jr's story. Maybe we can help bring justice from the brutality he suffered when Officer Caulkin assaulted, handcuffed, and arrested a 9 year old Autistic boy.
****

Now, the aunt fails to mention several key incidents which were reported in the article. I can't say 100% which is correct, but I tend to believe the news article. Here's my issue, people are assuming the officer was wrong in his treatment of the child. The child DOES have a black eye, this very well could have been caused by the officer trying to remove the child from the room divider that he climbed. If the child had been slammed into a table, I think the family (who are the ones who contacted the news) would have described how his injuries occurred correctly when reporting it to the news. I once clawed the back of Aiden's neck trying to prevent him from falling down a flight of cement steps, I grabbed whatever I could  to save him. I figured the scratches on his neck were preferable to a broken neck.

Does this mean the officer handled the situation correctly? No. But, then again neither did the school. The mother states that the school did not follow her instructions on how to deal with meltdowns. I find it hard to believe that a meltdown from a 9 year old boy required the assistance of the police. The entire situation could have been prevented had the school followed the mother's instructions for handling a meltdown. The police would have never needed to have been called.

I think up until the boy was arrested the officer acted as best as could he was equipped. He couldn't have done any better unless he was trained with how to deal with special needs children. I assume that at least ONE person in the school was trained on how to help special needs children, why weren't THEY doing their job? Why didn't the school follow the protocol the mother asked them to in the event the boy had a meltdown?

Why is everyone so quick to blame the officer when it's really the SCHOOL that failed this child? The black eye was an accident. The officer wasn't intentionally trying to hurt a special needs child and he wasn't being overly rough with him. Should he have arrested this child? No. Maybe he was trying to teach a child a lesson? It's not always obvious when a child has special needs. Trust me, I get nasty looks and rude comments about Brooklyn ALL the time. She doesn't look "different" so it MUST be my parenting. Never mind that I have tried EVERY parenting trick in the book and some out of the book. Never mind that my child is on medication to help her function properly and keep herself and others safe. Never mind that this is her SECOND round of behavior modification therapy.

Anyways, my point here is that the school didn't handle the situation correctly. We expect that when we send our children off to school that the school is going to protect them like WE would. That's one of the reasons I've given Alayna's teacher and Brooklyn's teacher student profiles listing their strengths and weaknesses and any other information that may be necessary. I even included in Brooklyn's that IF she has a meltdown at school they are NOT to restrain her, but are to call me right away and I will come down to the school and take care of it.

Back to the story, the issue here is that BOTH the school and the police screwed up. Fault is on both parties. But let's make this clear, the boy was NOT assaulted by a police officer. The officer tried to get the boy off of a classroom divider and in the process the boy hit his eye on the top. Then again, the boy did not assault the officer either.

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.

Prescription refills

Brooklyn's therapy clinic requires a weeks notice to refill prescriptions. Because she's on Adderall we have to pick up a paper prescription every month. There's no calling in a refill or faxing in a prescription from the doctor's office. Nope, they need a hard copy each and every month. Which is fine. I mean, picking up a prescription once a month is MUCH easier than the weekly and bi-weekly appointments we already have going on.

So, last Monday I called the therapy clinic to order a new prescription. Amazingly enough the doctor was able to write it that day and they mailed it out to me, I got it the next day. So, here I am on Tuesday with a prescription that can't even be filled until the following Monday. I seriously SHOULD have just taken it to the pharmacy that day and just waited to pick it up until the following Monday. But no, I thought I'd be smart and just wait until the weekend to get it done. The prescription was placed on my desk (which is NOT organized in the slightest). Fast forward to Sunday and the inability to FIND the prescription. And this is when I remembered that Alayna helped clean up and most likely threw away the prescription.

She feels bad, even though it totally was NOT her fault. The only person responsible is me. So, I totally feel like an idiot. I screwed up. I go to call the therapy clinic yesterday and it's closed for the holiday. So, I called her pediatrician in the hopes that maybe they could help us out... Nope, they're closed too. I finally get in touch with the secretary of the psychiatrist at the therapy clinic, she says she's going to get the note to the doctor and she'll call me back. Except, her tone... seriously judgmental.

First off, unless you've lived my life, DO NOT judge me. I'm not perfect, mistakes will be made, I'm only human. I've had extra kids ALL weekend. Friday and Saturday from 1pm ish to after midnight I had my niece and nephew. Sunday I have them from about 1ish until around 6ish. I had the kids' cousin over all weekend from Friday evening until later today. It's been a bit insane. I'm sorry I'm not a perfect parent capable of doing all things perfectly without any mistakes. I am SO NOT that person.

The only plus side to all of this is that we have to go to the therapy clinic today for Alayna's intake appointment. So, we're already going to be there this afternoon. Oh, and we get to go back tomorrow afternoon for Brooklyn's appointment.

And, on top of all of that, tomorrow is the first day of school!! Aiden and Alayna are the only ones going to school tomorrow. This week Brooklyn only goes to one half day on Thursday. And Thursday morning is also Alayna's doctor's appointment with our pediatrician. There is a LIST of things we need accomplished with that appointment; PT eval referral, OT eval referral, SLP eval referral, thyroid panel done, endocrinologist referral, geneticist referral, eye doctor referral, and a full developmental assessment referral.

Go ahead, do the math, figure out how many weekly and bi-weekly appointments that means for the Ryder family. Well, technically it depends on which services Alayna qualifies for, but worst case scenario we're talking 2 weekly/bi-weekly appointments for Brooklyn and 4 weekly/bi-weekly appointments for Alayna. Add in monthly doctors appointments for Brooklyn for medication management and every 6 month appointments for the dentist for all 4 kids and every 6 months for Alayna's eye check... Yea.

Busy busy busy.

Appointments, appointments, appointments.

I have spent ALL week scheduling appointments! I think I need some type of organizer/calendar/something to help keep everything straight.

So, onto the exciting news, Brooklyn's OT appointment has been scheduled! YAY!! Apparently the paperwork was mailed to the wrong apartment number, so I went down and picked it up yesterday. When I returned it, they had JUST had a cancellation, so Brooklyn's OT evaluation is scheduled for Tuesday August 14th, at 1pm. I'm a little anxious and full of what ifs. What if they say she DOES have sensory processing disorder? What if they say she DOES have Autism? What if they say she's fine and *I'm* crazy? So, for now we wait and see.

Alayna's appointment schedule is getting full too. She has a therapy/counseling intake appointment the first week of September, she has a doctor's appointment the first week of September, and ALL the kiddos go to the dentist on the 20th of September. Once we have the referrals from the doctor we can start making MORE appointments. Hopefully we'll be able to schedule all the evaluations (OT, PT, speech) for the same day/time. We have a nice list of specialists she needs (cardiologist, geneticist, ophthalmologist, etc), plus I'd like to have her hips checked out. She swings her hips around when she walks. Rather than her legs moving front and back they swing around to the side. She also needs a thyroid panel done, as the last time it was checked in November 2010 it was elevated, and hasn't been rechecked since.

That's not counting Brooklyn's weekly behavior modification therapy and the IEP evaluations we're requesting for both girls. So, needless to say the next 6-8 weeks are going to be SUPER busy.

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.

Couple in Vancouver found not guilty of "caging" two autistic boys

So, read that title again. Yep, CAGING two young autistic boys ages 5 and 7. I'm sure your blood is boiling right about now and you are thinking what you would do to these "parents" if you ever got your hands on them.

Now, consider that the boys weren't CAGED in the sense that you're thinking. They weren't put in dog kennels, actual cages, or anything of the like. A "cage-like door" was put on their bedroom door to keep them in one room when their dad and his girlfriend couldn't watch them.

Please keep in mind, I am in NO way,shape, or form condoning what these people have done. Do I think that the are "bad" parents? No, I think they are ill-equipped to meet the needs of two severely Autistic young children. These people were doing what they felt necessary to keep the boys, and their 2 other children safe.

In court, what came out was that the father and his wife fed the boys 3 times a day, their father went in and changed their diapers, played with them, cuddled them, loved them, they were allowed to watch TV, and they were home schooled. Nothing, out side of the "cage" door, else was going on. They were not neglected or abused in the sense that one generally thinks. Under NO circumstances do I believe that it is acceptable to LOCK a child into a room like they did (they had two metal wire closet shelves attached to the sides of the door and locked in the middle). It's most definitely a fire hazard and a HUGE safety issue.

What I don't get is why it went this far? We have children being beaten or their needs being neglected CPS is willing to work with them to correct this. They give them financial assistance, they offer them parenting support and classes. I know this first hand because I know of TWO different families who have had that type of "help" from CPS. Honestly, I think that this father loves his children, I think he truly wanted to take good care of them. But that he and his girlfriend didn't have a CLUE what that meant.

There are SO many services available, especially is larger areas like the Vancouver, WA/Portland, OR area. The Children's Home Society in Vancouver has amazingly helpful services including parenting support and classes. Innovations NW has a great therapy program for special needs children from birth to age 3 at which point children transition into their local school district program. There is Early Head Start which offers FREE evaluations for children ages birth to 3. From 3-5 (pre-Kindergarten) a child can get a FREE evaluation from their local school district. Once a child starts school a parent can request an IEP (Individualized Education Plan) evaluation, they don't even have to have a reason. Your child can be getting straight As and have a PERFECT record and you still have the right. The school then has 30 days to perform their evaluations. Your pediatrician is another GREAT resource.

I have a "special needs child". I understand what it feels like knowing that your child is a potential "danger" to your other children. When Brooklyn is not on her medication she is very impulsive and tends to react aggressively, especially towards Aiden. I can only imagine what it would be like to have a child with the safety comprehension of a 1 year old and the body of a 5 or 7 year old... Baby gates were worthless in my house by the time my kids were a year old, they would just climb them.

The difference here is that I would NEVER consider locking my child in a room to keep either her or her siblings safe. She did almost 8 months of behavior modification therapy in 10-11 and in 2 weeks starts a new behavior modification program. I've spoken to her pediatrician several times about my concerns, I make sure she gets her medicine every day, I keep a VERY close eye on her, and I've already spoken to her school about her starting Kindergarten in the Fall. I've done my research on how to best help her. I don't consider myself abnormally smart or an exceptionally great parent. I think I'm fairly intelligent and I do my best as a parent.

I think these boys are better off in a home with parents who CAN and WILL meet their needs. Who will make sure they're in therapy to help them reach their full potential, who will work with them daily and let them SAFELY explore their world in the hopes of finding a way to cope in it. Do I think these parents deserve jail time? No. I think they are probably better off raising their typical developing children and visiting with the special needs boys.

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!