All In One Neurologist

We just got back a few minutes ago from an appointment with Princess #2's new neurologist and I'm floored. She's so much more than what we've been dealing with in a doctor for the past few years that I didn't even know what we were missing. She also has a specialty in Autism Spectrum Disorders and Behavioral Disorders that I wasn't aware of when I first made our appointment with her. This woman is just amazing and I feel like she landed in our lap. Princess #2  loves her already which in itself is amazing, especially since this doctor is very no-nonsense. It often takes Princess #2 quite some time, if not a couple of visits, to warm up to someone.  She even did her best to make eye contact with the doctor when the doctor requested it, but that was agonizing for Princess #2.  Eye contact is such a struggle and so uncomfortable for her, even when she's not thinking about it. 

Dr. K is already going to take control of  Princess #2's seizure disorder and we'll be getting blood tests to check the levels of Lamictal in her blood to make sure it's appropriate and therapeutic.  Even better or just as good Dr. K is going to be very, very hands on with our behavioral issues, sensory issues, and social issues. Dr. K already wrote a prescription for  Princess #2 to get occupational therapy at our local autism therapeutic center and she said that she can guarantee Princess #2 a spot there because she consults at that school/clinic.

Dr. K already made another appointment for the 22nd, and said that she's not only sending  Princess #2 for special therapies but she's going to do therapies herself in her office. We won't need the Developmental-Behavioral Pediatrician that we've been on the waiting list for. That we've been waiting literally years to see.  It's like we have this amazing new all-in-one doctor and she's willing to do it all with us, not only willing but stepped up and offered.  When Dr. K asked what I had in place for Princess #2 outside of school and I told her we were on a waiting list for a Developmental-Behavioral Pediatrician to help us with the sensory stuff and behavioral stuff, Dr. K's response was, "Why would you do that? You don't have to keep waiting.  You have me.  I can help you with all of this.  Not just refer you, but actually do this myself one on one with Princess #2." 

What in the HUH??? Is this woman for real? Is it already Christmas? Did Santa come early? Was there an angel sitting next to me this morning? Did God answer a prayer for me so directly and so precisely "to order" that if I were to call it a coincidence lightning would strike me?

She's going to be hands on and in frequent contact with our school. She wants to know literally everything about  Princess #2 academically, she wants current and past IEPs, she wants progress reports from the teachers before each and every appointment that we have.

And for the part that made my heart sink. She's going to evaluate Princess #2 herself, which in and of itself is not bad.  Nor did it make my heart sink.  I wish our last neurologist had done this, as our child psychiatrist had done in obtaining the diagnosis of PDD-NOS "with the likelihood of Asperger's Disorder."  But Dr. K believes that Princess #2 doesn't have Asperger's Disorder. Dr. K concurs that Princess #2 should have had the PDD diagnosis, that she undoubtedly has ASD but she has more developmental and sensory issues apparent even just during our meeting today that people with Asperger's Disorder don't typically have, and if they do not to the extent that  Princess #2 does.

A new way of thinking, even though when the new DSM comes out it "won't matter" since "autism will be autism no matter what type it is." In my head there are a lot of complications to this anyway that I can't really express, but they're there.  How do I digest all of this? Do I relearn what I know or think I know? Do I stop researching so much about Asperger's Disorder? What type of Autism, other than "typical" do I put my energy into researching? We'll have more answers after her next couple of appointments but now it feels like we've backtracked even though we're probably actually making headway that I didn't even realize we needed to make.  I've felt like I've been treading water, nearly drowning and in over my head, not knowing where the life raft is.  Maybe this explains why.  We were close to the right diagnosis but not quite there... the peg just needed to be shifted slightly.  Just how much it needs to be shifted won't be clear for a little while, but there are answers and help to be had and it's not just in spitting distance.  It's finally HERE. 

Inner Conflict Resolution

My middle daughter turns 8 years old in just a few days.  She's in second grade, and it's a been quite a journey for her to get there.  Every year she's progressed further than she did the year before.  Every year, she has new challenges.  She has Asperger's Disorder, as I've discussed at length before.  This is a form of  Autism. 

But this post isn't really about her this time.  I'm proud of my daughter.  I love her with all of my heart.  But that doesn't mean that I don't get frustrated with her, or that I don't get angry with her.  Yes, with her.  Because sometimes her behavior is age-appropriate and situationally appropriate.  Sometimes there are even misleading moments and periods of downright averageness.  Our house has it's own normal, probably different than your normal, so I try to refrain from using "typically normal" except when referring to what is "typically normal" for my own children specifically.

For a long time, friends and family have described how I'm handling Princess #2 with various descriptors.  Strong.  Bravely.  Well.  Loving.  Caring.  Gently.  Patiently.  Courageously.  Inspirational.  A great advocate.  Self educated.  Encouraging.  Helpful.  Understanding.  Open-minded.  Firm.  So many positive words, so many more than I can think of now.  My best friend gave me a wonderful compliment the other day, saying that of all of us in our group of friends, the one of us who has handled motherhood the best and therefore would be the best mother for a special needs daughter would have to be me.  Considering I try to model my mothering after her, and that I believe she's the best mother I know, I took that as a great and undeserved compliment. 

But what people don't seem to see or maybe refuse to acknowledge are the other adjectives that can be used to describe me as a mother to a child with special needs.  Sometimes sad.  Tired.  Swimming.  In over my head.  Unprepared.  Afraid.  Worried.  Anxious. 

Angry.  I've been living through it since her diagnosis, and not allowing myself to acknowledge that emotion, but I've been angry that it happened to my daughter and by extension to my dearest heart.  Autism has happened to our family.  Everything that Autism makes more difficult, more pronounced, more MORE, has happened to my family.  And I've been asking, without acknowledging that angry question, why? 

And why haven't I been able... or feeling like I'm allowed... to acknowledge those negative adjectives and feelings? Why does the world expect parents with special needs children to put on a special happy face? We can't admit to anyone who isn't actually living it that some days, we're just plodding through, that we're just existing and faking it simply to get through the day until the day is over.  That our patience isn't infinite, that we don't always like our kids as much as we love them, and that we don't always know what to do. 

I didn't even realize until recently that I had that Why stuck in my head.  But it's been there.  It's been persistent.  In fact, it's been the driving force behind my anger.  I didn't plan to have a child with special needs.  When she was small and we weren't sure what was going on and it was before we had even an inkling that she was special needs I distinctly remember saying a brief prayer, "Please God, let this be something we can fix with her diet or medicine.  Don't let her have Autism."  I think maybe I knew even then before I really even knew what Autism was and that there were different types and severities.  I didn't even know why the word Autism flitted through my head in that prayer and I remember that it surprised me that my brain jumped to it.  At the time I had no clue.  I just had no clue.  I wonder if God answered my own prayer as I was praying it.  That thought has crossed my mind more than once. 

I quickly reached a point where I desired answers more than I desired "don't let her have Autism."

Of course I never once wanted her to have Autism.  Her diagnosis was devastating even though it gave us answers, and even though it gave us a starting place and a map on how to proceed.  It opened doors for us with her education in getting her a proper PPT and IEP.  But it also opened doors for feelings I didn't expect.

I'm not angry with her for having Autism.  It's not her fault.  None of it is her fault.  I parent her as I do my other children keeping in mind her strengths and her needs, disciplining her as best as fits her personality and the situations.  I give her as much love as she ever needs and encourage her to learn and laugh.  Life isn't easy for her to navigate so there are many times that she's not happy.  There are many things that are difficult for her to grasp that seem easy for other children her age and younger, that when she realizes it make her sad.  She knows she's different and sometimes that makes her sad or angry while other times it doesn't bother her at all.  She knows that either way she's loved and she's special.  She's learning the language of Autism so that she can ask for things that she needs when she needs them, and that makes me happy that she understands and is figuring those things out, but it's made me angry that she HAS TO. 

And all of this leads me to ask WHY? Why her? Why us? WHY ME? Why me and my child? Why would God do this to us? Why would he allow it? These are questions I haven't allowed myself to vocalize or even acknowledge but have been there in the back of my mind unformed nevertheless.  And I know that I haven't been to Church as much as I should since we received this diagnosis because I've felt betrayed by that prayer.  That prayer was the turning point, even before I heard the words, "Your daughter has Asperger's Disorder.  Yes, it is Autism.  She has PDD-NOS.  Your suspicions were correct and the evaluation shows this is an accurate diagnosis" 

Now there's a conflict that I'm having a lot of trouble with right now.  I had a spiritual purging over the weekend at an event called Women of Faith.  It was amazing.  I've never had a questioning of God during all of these years.  If anything, my faith has grown stronger.  It's been my anger getting in the way, my disappointment getting in the way, of properly worshiping even though I pray for help and pray for thanks.  My heart hasn't been in it quite the same way.  At this convention, I was forced to acknowledge this entire mishmash of thoughts and emotions in a short period of time and kept coming back to WHY?

And then near the end of the second day, the answer came from one of the inspirational speakers, answering the question I'd finally put a voice to in my own  head the night before while listening to their music and their stories.  WHY?  and then... Why not?

Why not indeed.  My daughter is still my daughter.  I love her.  I'm proud of every accomplishment she makes because I know how difficult they can be for her.  I take pride in the things that she finds easy.  I take pride in her talents.  She's smart, she's beautiful, she's funny, she's sensitive.  We need each other.  She wouldn't be who she is without the Autism, and I wouldn't be who I am now without her.  So why not her and why not me?  Maybe there are some lessons in there I should be looking at more closely, and maybe even being thankful for. 

Autism Spectrum Disorder Awareness

April is Autism Awareness Month. 1 in 151 children (updated from what used to be believed to be 1 in 166 children) and 1 in 92 boys (also updated) will be diagnosed with some form of Autism. We don't know what causes it. Rather, we have some theories and hypotheses, and it can vary from child to child. It may be environmental, or genetic, or a combination of the two. Or maybe there's something else that we just haven't figured out yet.

I am an Autism Awareness Advocate. I try to take the chance whenever I can to educate people on Asperger's Disorder, especially when there are situations that warrant educating people who don't know my child but come into contact with her. Those of you who are regular readers of my blog are probably already aware that my middle daughter, who is currently 5 yrs old, has Asperger's Disorder. Asperger's Disorder is a high-functioning form of Autism Spectrum Disorder, and has it's own spectrum within Autism. I will be honest, there are some people who will dispute that claim, but anyone who has an Aspie child knows that's the truth, and not a fallacy.

For the month of April, I will be keeping this button at the top of my blog, and if you know someone with Autism then join forces and include this button on your blog too, and blog about Autism during this month of April. Even if you don't have a child with Autism, it's always good to be informed. Please check out the links at the bottom of this post.... they are all blogs that concern Autism Spectrum Disorder.

I'm just going to include some links to past entries of mine that have dealt specifically with our personal Aspie Journey. I do have an update, but will dedicate it's own entry shortly.

OT Evaluation Meeting Today

My "Different" Princess Frou Frou

For Children Diagnosed With ASD

Just Call Me Advocate Mom

What You Didn't Know About Autism

What You Didn't Know About Autism

There is inspiration out there in the world. For every hardship, there's someone who has proven that it can be overcome. For every disability or difference, there is someone who proves that those differences can be managed and coped with.

If you've read my blog over the past couple of years, you might be familiar with the journey that we've been on in discovering Grace's Asperger's Disorder aka Asperger's Syndrome. Briefly put, it is a disorder found on the Autism Spectrum Disorder (ASD) and has it's own spectrum within itself as well. Typically, Aspies appear shy and socially awkward. They very often enjoy spending time alone. They may and do show other signs of autism, such as arm flapping when upset, obsessive attention to specific thoughts or objects, excessive emotional responses or responses that aren't appropriate to a particular situation, and many more.

Many Aspies engage in sensory seeking behavior. For Grace, that could mean playing in sand, water, or with finger paints and clay to satisfy the need to feel different textures. Most kids do that, right? But do most kids eat hot spicy foods even if they don't like it? Grace will eat super-hot salsa or jabanero peppers because of the heat. If it makes her tear up, so much the better. She will also drink straight, plain lemon juice, not because she likes it, but because it's an intense flavor that gives her a physical reaction. When she's upset, one trick to calming her down is finding a fabric on a toy or blanket that is soft and gentle and feels good, like a cloud, and asking her to focus on it. More often than not, it works!

Much of the time, Asperger's Disorder pairs with a diagnosis of Pervasive Development Disorder (PDD). That's a very generic term that essentially means "social, learning, and motor delays are present and significant."

Aspies have a much higher likelihood than other ASD's individuals to respond to therapies and treatments that are aimed to help teach them to cope with the world and help tailor their education so that their delays are worked through and hopefully eliminated. Through hard work, therapy and special services these children very often show no outward signs of their autism by the time they're in middle school.

To further help Grace, we'll soon be having her checked out by a genetecist who will do some basic neurological and genetic tests on her. I believe the goal is to help find out if there's a root cause for the Asperger's in Grace. Honestly, though, I think she just inherited all of the emotional anxieties and other crap from both sides of our family, and in Gracie, it showed up as Asperger's Disorder. I relate very much with a lot of the things Gracie goes through, but I also see certain tendencies in her that I see in other family members. Family members that don't have Asperger's.

I also want to make it very clear that Asperger's and Autism Spectrum Disorders DOES NOT MEAN that there is something wrong with an individual. It means that they think differently than the rest of us. That they have difficulty coping with social interactions and sensory stimuli.

As a parent to a child with Asperger's Disorder, it can be daunting trying to advocate for her and get her the services she needs. We're still in the process of figuring things out and getting special services through the school system, as well as her continued therapy with a child psychiatrist. After her genetic testing, we're hoping that will open the doors for more "play therapy." It can be overwhelming and stressful. Lately there are many more good days than bad, and I can see my daughter making efforts to overcome things that upset her and challenges she has that other children don't.

We have good days, but when we have bad days, they're very very bad. There are different triggers for the tantrum-like episodes, and usually we can predict what will trigger one, but sometimes... we can't. And those days are very difficult, especially if our usual soothing techniques aren't working. The good thing is that Grace does try most times now, because she's becoming aware that she needs help with certain situations. I'm quite proud of her for coming as far as she has.

I do wonder sometimes, and worry about what her future will be like. And then I hear something inspiring, like this and I know that she'll be able to do anything she chooses. These people below had/have uatistic traits including Asperger's Disorder.

Historical famous people
Jane Austen, 1775-1817, English novelist, author of Pride and Prejudice (see above)
Béla Bartók, 1881-1945, Hungarian composer
Ludwig van Beethoven, 1770-1827, German/Viennese composer
AMENDED Alexander Graham Bell, 1847-1922, Scottish/Canadian/American inventor of the telephone
Anton Bruckner, 1824-1896, Austrian composer
Henry Cavendish, 1731-1810, English/French scientist, discovered the composition of air and water
Emily Dickinson, 1830-1886, US poet
Thomas Edison, 1847-1931, US inventor
Albert Einstein, 1879-1955, German/American theoretical physicist
Henry Ford, 1863-1947, US industrialist
Kaspar Hauser, c1812-1833, German foundling, portrayed in a film by Werner Herzog
Oliver Heaviside, 1850-1925, English physicist
Thomas Jefferson, 1743-1826, US politician
NEW Carl Jung, 1875-1961, Swiss psychoanalyst
Franz Kafka, 1883-1924, Czech writer
Wasily Kandinsky, 1866-1944, Russian/French painter
H P Lovecraft, 1890-1937, US writer
Ludwig II, 1845-1886, King of Bavaria
Charles Rennie Mackintosh, 1868-1928, Scottish architect and designer
NEW Gustav Mahler, 1860-1911, Czech/Austrian composer
Wolfgang Amadeus Mozart, 1756-1791, Austrian composer
Isaac Newton, 1642-1727, English mathematician and physicist
Friedrich Nietzsche, 1844-1900, German philosopher
Bertrand Russell, 1872-1970, British logician
George Bernard Shaw, 1856-1950, Irish playwright, writer of Pygmalion (see above), critic and Socialist
Richard Strauss, 1864-1949, German composer
Nikola Tesla, 1856-1943, Serbian/American scientist, engineer, inventor of electric motors
Henry Thoreau, 1817-1862, US writer
Alan Turing, 1912-1954, English mathematician, computer scientist and cryptographer
Mark Twain, 1835-1910, US humorist
Vincent Van Gogh, 1853-1890, Dutch painter
Ludwig Wittgenstein, 1889-1951, Viennese/English logician and philosopher

Historical people prominent in the late twentieth century (died after 1975)
Isaac Asimov, 1920-1992, Russian/US writer on science and of science fiction, author of Bicentennial Man (see above)
Hans Asperger, 1906-1980, Austrian paediatric doctor after whom Asperger's Syndrome is named
John Denver, 1943-1997, US musician
Glenn Gould, 1932-1982, Canadian pianist
Jim Henson, 1936-1990, creator of the Muppets, US puppeteer, writer, producer, director, composer
Alfred Hitchcock, 1899-1980, English/American film director
NEARLY NEW Howard Hughes, 1905-1976, US billionaire
Andy Kaufman, 1949-1984, US comedian, subject of the film Man on the Moon
L S Lowry, 1887-1976, English painter of "matchstick men"
Charles Schulz, 1922-2000, US cartoonist and creator of Peanuts and Charlie Brown
Andy Warhol, 1928-1987, US artist

Contemporary famous people
Woody Allen, 1935-, US comedian, actor, writer, director, producer, jazz clarinettist
Tony Benn, 1925-, English Labour politician
Bob Dylan, 1941-, US singer-songwriter
Joseph Erber, 1985-, young English composer/musician who has Asperger's Syndrome, subject of a BBC TV documentary
Bobby Fischer, 1943-, US chess champion
Bill Gates, 1955-, US global monopolist
Genie, 1957-?, US "wild child" (see also L'Enfant Sauvage, Victor, above)
Crispin Glover, 1964-, US actor
Al Gore, 1948-, former US Vice President and presidential candidate
Jeff Greenfield, 1943-, US political analyst/speechwriter, a political wonk
David Helfgott, 1947-, Australian pianist, subject of the film Shine
Michael Jackson, 1958-, US singer
Garrison Keillor, 1942-, US writer, humorist and host of Prairie Home Companion
Kevin Mitnick, 1963-, US "hacker"
John Motson, 1945-, English sports commentator
NEW John Nash, 1928-, US mathematician (portrayed by Russell Crowe in A Beautiful Mind, USA 2001)
Keith Olbermann, 1959-, US sportscaster
Michael Palin, 1943-, English comedian and presenter
Keanu Reeves, 1964-, Lebanese/Canadian/US actor
Oliver Sacks, 1933-, UK/US neurologist, author of The Man Who Mistook His Wife for a Hat and Awakenings
James Taylor, 1948-, US singer/songwriter

For Children Diagnosed With ASD

I posted this on my MySpace support group for ASD parents and on BabyCenter Feb 05, but thought I'd share it here too. The more people who can take advantage of this, the better for the child's sake.

This is legitimate. I got the web site from 2-1-1 through United Way on the Children's Health Info Line. If your child has been diagnosed with ASD (autism spectrum disorder) then she is legally entitled to services through your town's education system, but she is ALSO entitled to apply for this grant.

The site goes into more detail, but essentially it would help cover medical expenses that are not covered by your primary health insurance (NOT dental). So the $25 copays we pay for each visit (weekly and biweekly to a child psychiatrist, so far) could potentially be covered and allow us to go as often as weekly. I just spoke with a rep from United Healthcare, and this application actually went live officially yesterday (8/27/07). I submitted an application for Grace (who has Asperger's Disorder on the ASD scale) this morning.

http://www.uhccf.org/