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!
Showing posts with label SPD. Show all posts
Showing posts with label SPD. Show all posts
Tuesday, September 11, 2012
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.
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.
Thursday, January 12, 2012
Tired
So tired today. And everyday for awhile now. I promised myself I would get back to blogging in the new year but here it is January 12 and it has been weeks since I posted anything. I wanted my writing to be witty or informative, or entertaining at the very least. Can't find the words for that right now.
Barney isn't sleeping well. He wakes up at dark o'thirty so disregulated that if I do not leap out of bed at the first sound of his voice, disaster strikes. In a matter of seconds he turns on the blindingly bright hall light. He heads first to his brother's room where he pulls off all Henry's blankets then dismantles every surface and shelf in one fell swoop: stuffed animals, books, Lego creations, school projects and anything else in his path. Henry understandably yells at him. Not only has he been rudely awakened from a deep sleep but he is now freezing. We keep our house at 60 degrees over night and Barney wakes up well before the morning heat comes on.
Barney's next stop is our bed. He does not want anything to do with his father. He wants "MOMMY ONLY". He doesn't snuggle but lies on top of me and kicks or bangs his arms keeping his body in motion at all times. I try to hold him, give him the deep pressure he so badly craves but nothing is enough. If I loose my patience with him he leaps up and tears apart our bed, then runs screaming down the hall. He knows full well that he has enraged his father which terrifies him, but he cannot stop himself. He runs into his own room, slams the door, and rips apart his bedroom. When furniture hits the door no matter how little sleep I have had, I have no choice but to get up. It could be 6:30 or 6:00 or 5:30 or 5:00. Its always my job.
That's why I force myself to get up when I first hear him. And that's why I'm so tired I can't think straight.
Barney isn't sleeping well. He wakes up at dark o'thirty so disregulated that if I do not leap out of bed at the first sound of his voice, disaster strikes. In a matter of seconds he turns on the blindingly bright hall light. He heads first to his brother's room where he pulls off all Henry's blankets then dismantles every surface and shelf in one fell swoop: stuffed animals, books, Lego creations, school projects and anything else in his path. Henry understandably yells at him. Not only has he been rudely awakened from a deep sleep but he is now freezing. We keep our house at 60 degrees over night and Barney wakes up well before the morning heat comes on.
Barney's next stop is our bed. He does not want anything to do with his father. He wants "MOMMY ONLY". He doesn't snuggle but lies on top of me and kicks or bangs his arms keeping his body in motion at all times. I try to hold him, give him the deep pressure he so badly craves but nothing is enough. If I loose my patience with him he leaps up and tears apart our bed, then runs screaming down the hall. He knows full well that he has enraged his father which terrifies him, but he cannot stop himself. He runs into his own room, slams the door, and rips apart his bedroom. When furniture hits the door no matter how little sleep I have had, I have no choice but to get up. It could be 6:30 or 6:00 or 5:30 or 5:00. Its always my job.
That's why I force myself to get up when I first hear him. And that's why I'm so tired I can't think straight.
Saturday, December 10, 2011
The Other Shoe
We had such high hopes for the new behavior plan Barney's school implemented on Monday. It worked like a charm for three days but despite careful planning, the team forgot to factor in Phys Ed.
Barney attends the largest elementary school in town. There are 4 or 5 classes at each grade level resulting in overcrowding. One of the consequences of this overcrowding is doubling up classes for Gym. Barney has Sensory Processing Disorder and is very sensitive to sound. We cannot easily take him to any of the warehouse type stores (Home Depot, COSTCO, Wal Mart, etc) without a meltdown. The vast space, echo, and crowds quickly put him into sensory overload. And what do a warehouse store and a school gym have in common? You got it: sensory overload for my boy.
Being the true Aspie that he is, Barney craves order and predictability. Thursday's gym class activity was a game of random order. Balls bouncing all over the gym while 44 second graders ran around making noise and my kid was already at maximum overload. When the whistle blew, anyone holding one of the 5 orange balls became a leader of the next round. Round 1, Barney didn't get a ball and he was OK. Round 2 and he didn't get a ball; his distress began to increase. Round 3 and no ball, he grabbed one out of another child's hand. He was put in time out for 5 minutes and returned to the game. Immediate repeat of round 3 behavior and he was removed from the gym. Upon removal he became physically aggressive.
As required by his behavior plan, any physical aggression towards another person lands him in a half-day, in school suspension. Is it just me or could this episode have been prevented if the staff had acknowledged his SPD and handled things differently? I feel like I am eternally waiting for the other shoe to drop.
Barney attends the largest elementary school in town. There are 4 or 5 classes at each grade level resulting in overcrowding. One of the consequences of this overcrowding is doubling up classes for Gym. Barney has Sensory Processing Disorder and is very sensitive to sound. We cannot easily take him to any of the warehouse type stores (Home Depot, COSTCO, Wal Mart, etc) without a meltdown. The vast space, echo, and crowds quickly put him into sensory overload. And what do a warehouse store and a school gym have in common? You got it: sensory overload for my boy.
Being the true Aspie that he is, Barney craves order and predictability. Thursday's gym class activity was a game of random order. Balls bouncing all over the gym while 44 second graders ran around making noise and my kid was already at maximum overload. When the whistle blew, anyone holding one of the 5 orange balls became a leader of the next round. Round 1, Barney didn't get a ball and he was OK. Round 2 and he didn't get a ball; his distress began to increase. Round 3 and no ball, he grabbed one out of another child's hand. He was put in time out for 5 minutes and returned to the game. Immediate repeat of round 3 behavior and he was removed from the gym. Upon removal he became physically aggressive.
As required by his behavior plan, any physical aggression towards another person lands him in a half-day, in school suspension. Is it just me or could this episode have been prevented if the staff had acknowledged his SPD and handled things differently? I feel like I am eternally waiting for the other shoe to drop.
Saturday, December 3, 2011
When Did We Know?
Whenever we first speak with a new service provider they always seem to ask the question when did we know? Know that our child was different? Was special? Was on the Autistic Spectrum? In retrospect, the signs were always there but Barney was not diagnosed with Asperger's Syndrome until just after his 6th birthday.
Let me back up a bit. Barney was born in May 2004, a healthy, full-term, 7 pound 8 ounce bundle of spice. At that time I had a 18 month old son as well. In the hospital, I sent my hours old baby to the night nursery in order to get some sleep. I'd recently been through this newborn business and knew to take advantage of sleeping whenever possible. Unfortunately the nursery would not keep him because no matter what they tried, he would not settle down; I thought maybe the head night nurse was having a bad night. They brought Barney to me where he did settle down but he nursed so hard and so long by morning my nipples were bleeding. I was no first time nurser. My older son had only weaned about six months prior and I had never bled before, so clearly something was different this time around.
We brought our new baby home to the chaos of a toddler. I'd always read that second children can sleep through anything so I wasn't too worried. Not this kid! He screamed, nursed, and screamed some more, for weeks on end. Yes, he did sleep of course, just not as much or as long as typical newborns. As in the hospital, no one but Mommy could soothe this child; he needed to be in my arms at all times. The co-sleeper I had used with his brother remained empty. Barney only slept if he had skin to skin contact with me.
OK, so every baby is different. Maybe my first born was just incredibly easy and this was they way most babies acted. I soldiered on because this was my child and I loved him unconditionally. Barney continued to eat at an alarming frequency, gaining weight so quickly from breast milk that my family joked I was feeding him chocolate milk. He had gained over 3 pounds by his 4 week check up. I expressed concern to his pediatrician who assured me that babies cannot overfeed themselves while nursing. Still I worried, it felt like his brain never received the message that he was satiated. Little did I know what lay ahead.
Let me back up a bit. Barney was born in May 2004, a healthy, full-term, 7 pound 8 ounce bundle of spice. At that time I had a 18 month old son as well. In the hospital, I sent my hours old baby to the night nursery in order to get some sleep. I'd recently been through this newborn business and knew to take advantage of sleeping whenever possible. Unfortunately the nursery would not keep him because no matter what they tried, he would not settle down; I thought maybe the head night nurse was having a bad night. They brought Barney to me where he did settle down but he nursed so hard and so long by morning my nipples were bleeding. I was no first time nurser. My older son had only weaned about six months prior and I had never bled before, so clearly something was different this time around.
We brought our new baby home to the chaos of a toddler. I'd always read that second children can sleep through anything so I wasn't too worried. Not this kid! He screamed, nursed, and screamed some more, for weeks on end. Yes, he did sleep of course, just not as much or as long as typical newborns. As in the hospital, no one but Mommy could soothe this child; he needed to be in my arms at all times. The co-sleeper I had used with his brother remained empty. Barney only slept if he had skin to skin contact with me.
OK, so every baby is different. Maybe my first born was just incredibly easy and this was they way most babies acted. I soldiered on because this was my child and I loved him unconditionally. Barney continued to eat at an alarming frequency, gaining weight so quickly from breast milk that my family joked I was feeding him chocolate milk. He had gained over 3 pounds by his 4 week check up. I expressed concern to his pediatrician who assured me that babies cannot overfeed themselves while nursing. Still I worried, it felt like his brain never received the message that he was satiated. Little did I know what lay ahead.
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