Tuesday, September 11, 2012

45 Miles

What a difference a year makes!!  It has been four months since my last blog post and so much has happened in that time.

Last Spring Barney was removed from school and placed in an out-patient Psychiatric Hospital due to acute anxiety. While in treatment he was started on a small dose of Zoloft which literally changed his life. Things like loosing data on a video game or discovering a less favored meal on the dinner table which had previously sent him into a tailspin didn't send him over the edge any more. We were full of hope and excited for the Barney to go back to school. Unfortunately the return was not anything like we imagined because the school was not open to our new and improved child.  The staff continued to over react: Barney was restrained for throwing a sock or ripping up a worksheet and placed in seclusion for removing his shirt.

Half-way through the second day of his return to school we received an email from the SPED Director informing us that an out of district placement was necessary, the town was unable to meet his need for Therapeutic intervention.  This is the kicker, Barney did not require therapeutic interventions in preschool, kindergarten or 1st grade. Extra supervision, yes, intensive intervention, no. His behaviors did not escalate until he was placed in a classroom with a teacher who simply did not care. He had a para and the teacher basically washed her hands of any responsibility for him. Don't let anyone tell you that spectrum kids can't read people. Barney was not on her priority list and he knew it!

Think about how you feel when you get bad vibes from someone. Depending on your personality it can make you jumpy and uncomfortable , dispassionate and aloof , angry and defiant or some combination of these feelings. Now imagine a brilliant but emotionally delayed child who has difficulty with social situations and emotional regulation. He really didn't stand a chance.

The SPED Director gave us a list of schools to look at.  As my husband and I began to explore our options we were struck by the fact that we were were being sent to look at programs for emotionally disturbed children.  I fully realize that Barney, when acutely anxious, displays some behavior that could be viewed as emotionally disturbed if someone was UNAWARE OF HIS AUTISM. Not one of the schools had a specialty in Autism or even a BCBA on staff, they were all for children with out of control behavior.

There is not a plethora of choice in the area where we live.  The local Autism programs are not appropriate for the high-functioning/Aspie kids. What to do?  We expanded our search area from a 10 mile radius to 20 miles:nothing! Ack, I couldn't imagine sending my baby so far away. Would he be OK with the longer day? With a long van ride?  I was about to commit to the least offensive of the "behavior schools" when we expanded our search to 50 miles and at 45, we found the perfect school!!!  Rural campus, small classes, individualized instruction, pragmatic teaching, sensory classrooms, all high-functioning students.  The school's motto "...because every child can succeed".

Today is Barney's 5th  day at his new school.  There has not been a single complaint about being bored.  He jumps out of bed each morning at 6:15 in a rush to dress, eat and brush his teeth in order to watch for his bus.  When it arrives he flys out the door, he can't wait to get there!

45 miles is too far a distance to travel only if your are headed to the wrong place. My boy has found his people.  He feels understood, valued and at peace. We have been blessed!

Monday, May 7, 2012

Reality Sets In

I've been MIA from this blog for awhile.  While on the phone with my Mom this morning I realized that I have not been sharing the happenings in our family with anyone lately.  I don't honestly know how many of my friends/family even read my blog but it feels easier to write about it here and let the pieces fall as they will.

Barney has been in a Psychiatric Hospital since April 18th. He's in the day program so he comes home every afternoon and sleeps in his own bed but its a lock-down unit none-the-less. Not exactly information that you want to shout from the rooftops. I've been traumatized, embarrassed and overwhelmed by the whole thing.  The poor kid spent his 8th birthday there!  Mommy guilt galore....

My immediate family is aware. A few close friends who do not live in town were told, but I did not reach out. Once again I have isolated myself in my darkest hours.  Not the healthiest response but I pull inside myself when the going gets tough.

We have a huge meeting with Barney's school tomorrow morning. It is school anxiety which landed him in the hospital to begin with.  Not really looking forward to this meeting.  The Hospital does not want to keep him as an inpatient long-term, which is a good thing but I am not confident in the school's ability to keep him relaxed and feeling safe which is imperative to his successful re-entry.

Barney has not been in school at all since April 13th.  He was pulled out of school due to medical necessity on March 19th and returned for half-days between March 26-April 13. We desperately need the school system to admit that they are not equipped to deal with him. The reality is that we live in the wrong area.  The closest appropriate private placement is over 70 miles away. I have no idea how this is going to resolve but I am scared for my kid!!!

Monday, March 5, 2012

One Year Ago

In  honor of how far I have come in a year's time, this blog entry is about me.  I have been following The Year of the Oxygen Mask Project on Facebook and felt that on this anniversary it was time to tell my story. One year ago I was fighting for my life.

My problems began winter '09-'10.  I remember lying in bed and feeling a lump in my lower abdomen.  It frightened me but I didn't tell anyone, even my husband or my parents about what I had discovered.  Barney was in Kindergarten at that time without supports.  He had a diagnosis of SPD and was seeing an OT and a Psychologist privately but was suffering in school.  His Kindergarten program was only half-day and the extended day program we had set up for him was crashing and burning, the transition between programs proving to be more than he could handle. He was only in school 2 hours and 40 minutes a day.

I knew I needed to see a doctor but couldn't figure out how to make the timing work.  To make matters worse, when we moved to this community I had quickly chosen a Pediatric practice for the boys.  With their assistance I was able to locate the best OT's and Speech Therapists in the area and make appointments for evaluations to get services up and running as quickly as possible.  OT was not a problem and we  got in, the wait list for Speech was over a year but at least we were on the list.  What I failed to do was find a Primary Care doctor for myself.

In early February Barney's half-day Kindergarten made "The Big Switcheroo" as it is fondly named.  The children who had been attending morning K switched to the afternoon and vice versa. Most kids experienced some anxiety about the change but calmed down as soon as they realized they were still in the same classroom with the same teacher and classmates. For Barney the change was excruciating and he never got over it. I ignored the lump to focus on him, not an intelligent choice, but my kid needed me so I put myself on the bottom of the list and there I stayed.

During these months, and probably for 6 moths prior, my menstrual cycle was out of whack.  My periods we coming closer and closer together and were becoming more and more painful. I bled so heavily I needed to spend day 2 and 3 of my cycle lying on the couch and very close to the bathroom. I needed to change every hour or 2  on those days so I only left the house to transport the kids, praying all the while that I would not bleed out.  I worried each month during my period that something was terribly wrong, but convinced myself during the other 3 weeks of the month that this was Peri-menopause, because I remembered my Mom having heavy periods at the same time in her life.

I lived with these incredibly dangerous periods until June when my husband found me on our bedroom floor in the middle of the night, curled into the fetal position from pain. He said he was taking me to the emergency room.  I refused but promised to call a doctor the next day.

Here's the kicker. The next morning I called the OB/Gyn practice some friends had recommended. They couldn't see me because I have an HMO and needed a referral from my primary care.  I didn't have a primary care, so I called my doctor from before we moved.  It turns out I had never been to see her so she couldn't make the referral for me.  I called the primary care practice which had been recommended and was told they were booking six months out!!! I attempted to explain to the receptionist that this was an emergency but received no sympathy.  Only current patients can be seen for emergencies. I scheduled an appointment for December.

Stupid, stupid me never asked for help.  I live in a town full of Doctors. There is an Ob/Gyn who lives on my street.  I have two  friends who's husbands are Ob/Gyn's.  I told NO ONE what was going on.  I suffered in silence as the lump in my abdomen grew, my periods continued to get worse and I waited for December to come.  In retrospect, I was damn lucky I lived that long.

December 2010:  I finally get in to see Dr. P.  She's innocently asks me, "So, what brings you to our office today?"  I sheepishly respond with something about being an Autism mom and being in Dr.'s offices all the time for my kid but never for me and that I am having a little problem. When I expand upon my problem her demeanor quickly shifts from casual friendliness to high gear professionalism. Although her voice never betrays her I can see the fear in her eyes.  For the first time I allow myself to acknowledge the severity of the situation I have placed myself in.

My new doctor feels around my abdomen and tells me my uterus is the size of someone who is five months pregnant.  She does an internal exam and calls in her nurse.  The nurse is instructed to contact a particular GYN practice and not hang up until there is a scheduled appointment for me.  "Today or tomorrow", she quickly adds. I leave the office with an appointment to see the GYN the next morning.  This is a first for me, even with Barney's diagnosis, although I felt a sense of urgency, none of the practitioners did.  This time, no one was saying anything, but I could tell this was serious.

Next day I'm in Dr.V.'s office.  She examines me and is unable to hide the panic in her voice.  She needs to get an internal ultrasound and a biopsy but she also feels I needs an emergency D&C to clean me out enough to see what is actually growing in there.  She calls the hospital to schedule an OR and quickly writes up lab slips for me to have blood work and the ultrasound.

I come home and call my parents to explain what is going on.  They tell me to let them know as soon an my surgery is scheduled and they will be there to take care of the boys while I'm in the hospital, and me post-op. Dr. V takes the first available OR and I am scheduled for surgery three days later.  I go to the hospital with a sense of relief thinking my nightmare is almost over, blissfully unaware of what Dr. V will find.

I have an enormous uterine fibroid.  It has grown both inside and outside my uterus.  While in the OR, my bleeding cannot be controlled.  I almost die on the table.   Dr. V is convinced I have aggressive uterine Cancer.  I come home weak and terrified about the "What ifs?".  For three days I am certain my death is imminent.  Then the call comes.  My fibroid is benign. I am not a religious person by nature, but I truly believe God kept me alive for my kids. I know I won't live forever, but being an Autism mom I kind of feel like I need to.

Dr.V referred me to the top Gynecological surgeon in the area, Dr.G.  He examined me a few days after my D&C.  My fibroid was too large to remove without major abdominal surgery which he wanted to avoid.  His decision was to temporarily shut off my estrogen production which was feeding the fibroid and give it time to shrink. I was prescribed medication which threw me into full blown menopause for two months.  Not fun emotionally, but no periods.  It was incredible how strong and energetic I felt when I stopped loosing so much blood every month.

One year ago today, Dr.G. removed my uterus laproscopically.  He needed to make 5 incisions instead of 3 because that fibroid was still pretty f-ing big. My scars are fading slowly, but still quite visible.  My daily reminder that I am useless to my kids if I am not healthy and strong.

I almost bled to death from an untreated benign fibroid.  Don't make the same mistake I did.  Take care of yourself because nobody is going to do it for you. Put on your oxygen mask and live.  That's what I intend to do from now on.

Tuesday, February 14, 2012

Aspies, Empathy and Valentine's Day

Don't ever let anyone tell you that children diagnosed with Autism are incapable of empathy.  It just isn't true!!!

Barney is again on a downward spiral at school.  He had six incident-free weeks in a row between December and early February and the TEAM decided to back off his rewards a bit.  Unfortunately his aide interpreted this to mean she could relax and that was the wrong thing to do.  He's been in trouble 3 out of the last 4 days.  When he gets in trouble, he becomes anxious; when he's anxious he looses his abililty to control his impulses; when he looses impulse control be becomes physically aggressive. Physical aggression lands him in seclusion and results in an in school suspension. Yep, that's where he was Wednesday and Thursday of last week, and again today.

Last night when I was putting Barney to bed we had our nightly chat about his day.  I told him I was sad because he was spending so much time alone.  That it hurt me to see him in trouble so often and that I felt like I was failing him as a Mom because I couldn't figure out a way to make things better for him.  He told me, "It's not your fault Mommy!  You are the best Mommy ever, its school who is doing something wrong."  Then he gave me a huge hug and the tears ran down my face. If that wasn't an act of empathy, I don't know what is.

Last night I posted a question on Confessions on an Asperger's Mom's facebook page and the response from the community was overwhelming. We need to make some significant changes for my son.  I don't know exactly what or when, but change is definitely in the air.

This morning I was awakened at 6:23am by a gentle kiss on my cheek and a softly whispered, "Happy Valentine's Day, Mommy" in my ear.  He gets it!!!  He knew I was hurting and worried about him and he reacted appropriately; empathy at its finest.  He's spending Valentine's Day in suspension but was able to put my feelings ahead of his. Its not going to be the best Valentine's Day of my life, but I'm going to hold on to the warmth of his love all day.

Wednesday, February 8, 2012

T-9 to Disney

We are taking the boys to Disney World for the second time in less than 2 weeks. I sometimes cannot believe we are doing this, but there is a method to our madness.

Before becoming a Special Needs Mom, I imagined taking my children to Disney once, just as my parents had taken my brother and me. I thought of the "happiest place on earth" as man made, lacking culture and a huge advertisement to get parents to buy Disney products for their offspring.  Yes, it is all those things, but for a family like ours, it is a place we can all enjoy ourselves.  A place where Barney's issues don't feel quite so overwhelming and we can just be a family on vacation.

Disney has historically worked hard to accommodate special needs families. They don't just think about the child with special needs, they are sensitive to siblings and other family members as well. They want everyone in the family to have a wonderful time. When a parent or child is in a wheelchair, extra help boarding rides is an obvious need.  Autism is an invisible condition (most of the time) but families touched by ASD are given the same assistance as those with any visible disability.  Shorter lines and quiet, less crowded spaces to wait make all the difference for us.

We have somewhat altered our plans, having learned from our mistakes the first time around.

Travel: We booked a direct flight; more expensive but a necessity.  Barney is OK when we initially set off on adventures, excitement helps.  We bring headphones (planes are very loud), his favorite snacks, ipad, games, books and novel toys for the airport and on the plane and usually we can get through without a meltdown. Switching planes with a long layover or a mad dash to the other end of the airport because of a too short layover is asking for it.  Been there, done that, not worth it!!!

Lodging: This time we are staying on property.  Again, more expensive but well worth the money.  When a hotel says they are 4 miles from Disney, that means the edge of the property.  The Disney World property is huge!!  Last trip we stayed 5 miles away and the hotel provided transportation to the park.  Sounded good.  What we did not know was each bus ride would take AN HOUR.  The shuttle looped through three different hotels and stopped at Downtown Disney, Magic Kingdom, Epcot, Hollywood Studios and Animal Kingdom.  Most mornings Barney needed a break as soon as we got off the bus.  This trip we are staying in a Disney Condo near the Magic Kingdom.  It has a small kitchen so we will have breakfast in our P.J.'s just like we do at home when we are on vacation.  We can walk to the Magic Kingdom, take a short Monorail ride to Epcot and only have to board a bus for Hollywood Studios, Downtown Disney or Animal Kingdom.  We are also close enough for Barney and I to return to our room in the middle of the afternoon if he needs some down time. This change in lodgings should be a huge improvement.

Dining:  First visit I was afraid to commit to dinner plans.  I had no idea what condition Barney would be in by the end of the day.  At home, 4:30-bedtime is hell on the worst days, but never easy even on the best days. Unfortunately I aggravated this situation because without reservations we had long waits every night. I made reservations this time.  Eating on schedule makes all the difference when trying to keep Barney regulated.  We have dinner seating for 5:45 or 6 pm each evening.  No guess work, no long wait.  I am very hopeful that this change will improve our evenings significantly.

We are starting to become increasingly excited about our trip.  Here's hoping it lives up to our expectations and then some.

Wednesday, February 1, 2012

Water, Water Everywhere

I should have bought stock in Bounty paper towels long ago.

Barney has loved experimenting with liquids since early toddler hood.  It started innocently enough when I bought him a floating stove top and cooking utensils for the bathtub.  I was tired of him dumping the dog's water dish multiple times a day.  He also constantly grabbed for any beverage container within reach at home, and anywhere else we happened to be: playgroup, the park, Starbucks, it didn't make a difference to him. In an attempt to be a creative problem solver, I figured encouraging  his pouring and mixing tendencies in the tub each evening would decrease his need for this behavior outside of the tub.  Hah!

The bathtub full of cups, pitchers, bowls, pots and spoons inspired Barney to find new and more exciting liquids to pour and mix. All of my cleaning supplies and toxic liquids were safely out of reach even before Barney was born, having childproofed for his older brother 18 months earlier. Henry liked to splash but it never occurred to him to explore any of the other bottles and tubes in the bathroom.

Whenever the house got too quiet I knew to check the bathroom. If I reacted quickly enough I would find him mixing toothpaste, mouthwash and shampoo in a drinking cup with his brother's toothbrush. His intelligence has never been in question.  He had already figured out that a soapy toothbrush tasted yucky so after one bad experience he never again used his own.  If I happened to be distracted by a phone call or my older child and hesitated before finding him, the experimentation would have escalated to the sink or toilet.  I can't even begin to imagine to money we have spent replacing shampoo, conditioner, lotions, toothpaste, shaving cream, etc.

I understood that Barney's behavior was fulfilling  a sensory need as well as being an outlet for his natural curiosity. When the weather was warm enough, we do after all live in New England, I indulged lots of water play outside. We had a water table on the deck, a wading pool, sprinkler, hose with a kids firefighter attachment, sprayers, water balloons, splash balls and anything else I could think of. I let him play and play as long as he wanted and it worked.  That is, until the temperature dropped enough for it to be uncomfortable to be soaking wet outside.  Cold weather always brings with it a significant increase in bathroom play.

Last weekend however, he took things to a whole new level.  His latest thing is indoor water balloons.  I have been as patient as possible and have allowed this play in the bathroom.  He fills the balloon in the sink and explodes it in the tub, the bathroom gets really wet but I can deal with it.  On Sunday morning while I was in the shower (and my husband was supposed to be paying attention, cough-cough) Barney filled up a water balloon and decided that he wanted to see how long it would take for the water to drain out from a pin hole.  Since he didn't want to wait alone in the bathroom he brought the balloon into the kitchen. Daddy is not nearly as tolerant as I am and Barney did not want to be yelled at so he hid his slowly leaking  balloon.  He hid it behind MY LAPTOP!!!!!

I came into the kitchen relaxed and freshly showered and found a flood.  My computer and all the paperwork on the counter surrounding it (prescriptions, applications, bills, etc.) were soaked and sitting in a puddle of water.  I am usually a calm, even tempered person but I lost it!  There is only so much I can take!!!

Wednesday, January 25, 2012

Pokemon, Lego & Percy Jackson

What are your child's special interests? This question I am so often asked by the professionals makes me want to laugh.

I think back to Barney's very first evaluation done by the early intervention team when he was 2.5.  The team had just diagnosed him with Sensory Processing Disorder and a delay in pragmatic language.  Given my own teaching experience and M.Ed. in SPED, the pragmatics issue set off warning bells. So I asked them, "Is this what Asperger's looks like in toddlers?"  I was assured in no uncertain terms that he had such a wide range of interests and abilities he could not possibly be on the spectrum. Looking around our playroom they identified the play kitchen, train table (Thomas, of course),  Duplo building toys, stuffed animals, puzzles, variety of books and games that Barney enjoyed with equal enthusiasm. I was told that when they go into a house and see only one theme reflected ( Barney, Elmo, Thomas, etc.) that's an indication of spectrum behavior, but I didn't need to worry. Barney loved fire trucks, The Backyardigans, making block towers, cooking pretend food, numbers and letters, being read to and the color green.

I was relieved.  I threw myself into learning everything I could about SPD. The Out of Sync Child became my bible and  we turned our basement into a sensory gym. We had a plastic slide in the yard which I cleaned up and brought inside.  We got a mini-trampoline, a hoppity ball, a scooter board, a cheap exercise ball and gave him the space to run, jump, crash and fill his sensory needs. He was only 2 and everything I read told me I had until his 5th birthday to change his brain patterns and dammit, that's what I was going to do!

Despite the intensive OT, both at home and privately with a therapist, Barney's problems did not go away.  They changed, some things becoming easier for him and other things harder. In preschool he crashed into anything and everything, knocking over block buildings, dumping baskets of toys, and pushing kids out of his way even at the top of the slide. At 4, it was recommended that we take him for a full Neuro-Psych evaluation.  Of course there was a long waiting list and it took about 7 months to get in.

The Neuro-Psych results indicated a superior IQ, serious sensory issues, attentional issues, ocd tendencies and generalized anxiety. I asked the team, where does he fall on the autism spectrum?  Huh?  They were shocked by my question!  Parents don't ask for spectrum a diagnosis! Once again I was told that Barney had deficits but his strengths were so broad and well rounded that they had no indication that he was on the spectrum.

At that point in time he loved pirates, Little Einsteins, reading anything he could get his hands on, singing and putting on shows, catching bugs and the color green.  His classmates were into Super Heroes which wasn't his thing so he asked me to take him to the library so he could check out some books and teach himself  enough back story to participate in the games at school. The evaluators told me that spectrum kids don't do things like that. Again I felt relief.  When I presented the Neuro-Psych report at the Kindergarten transition meeting I proudly stated, "He's NOT Autistic."

Today Barney still loves to read and be read to.  In school he's reading Harry Potter in his free time, currently on Goblet of Fire.  At home he's reading Percy Jackson and just started The Last Olympian. He loves to build with Lego and is working on his Ninjago collection. He collects Pokemon cards, favors Pokemon ds games and can rattle off facts ad nauseum. In his free time he's teaching himself square roots and long division. Over the weekend he built a catapult out of wood, just for fun. He's also teaching himself to play the drums.  Guess what?  This is what Autism looks like in our house.  Oh, and he still loves the color green.