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.

Big updates, sorry, I've been slacking!

OK, updates for Miss Brookie. She is LOVING school and doing awesome at school, ZERO behavior or academic issues. She's really thriving on the routine and structure of school. Downside, her teacher is not so great. The one time I tried to talk to her about Brooklyn's skill levels she brushed me off. Her only response was that the math Brooklyn is doing at home is much too hard for a 5 year old. Um really? Then how come she  can get the answers correct? It's not like she's doing multi digit multiplication. She's just doing double digit addition to 99 and subtraction from 19.

Because she's not having any issues with school (behavior or academic) our hands are kinda tied. She wouldn't qualify for an IEP or 504 plan which would be the only way for us to force the teacher into giving her harder course work. Our other options are to keep doing more complicated work with her at home and try to get her evaluated for being moved up to 1st grade, or to to keep doing more complicated work at home and wait for her to get bored and have issues at school.

Updates about Alayna! OK, so LOTS of appointments coming up. Physical therapy evaluation today, occupational therapy evaluation on October 4th, followed by an IEP meeting that same afternoon. Casey Eye Institute eye check on October 15th, and an appointment with an orthopedic surgeon at Shriner's Hospital on October 25th. This makes for a VERY busy family. All that doesn't include all of Brooklyn's appointments (weekly behavior modification and HOPFULLY soon bi-weekly OT).

Alayna is doing OK in school. She's made some friends, a few who live in the same apartment complex as us. She's struggling a bit with the homework. She often needs help with the spelling assignments as they are multiple steps and she gets lost after 1-2 steps. She has struggled with double digit multiplication, I'm not sure she learned it last year as she had no idea how to do it and I had to teach her this year. Her teacher is REALLY awesome. She's been great every time I've had to speak with her about how Alayna was doing in class. She's going to attend the IEP meeting, so it'll be nice to get her take on how Alayna is progressing.

Alayna is joining the "friendship" club at school. I think it should help as she really struggles with friends. She's just not at the same level as kids in her peer group (2 years behind her age group) and it causes issues with maintaining friendships.

So, those are the updates for now. I will update again once we know anything from any of the many appointments.

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.