My son, Samuel, was diagnosed with Aspergers Syndrome, just after turning three years old. Today he is seven. We were fortunate to find out at such a young age; Asperger's is often called 'mild autism' (though mild is not the word most parents would use) and therefore is sometimes "missed" until the symptoms begin to show up in academics (3-7th grade). God prepared me as Samuel's mother in many ways, and I'd love to share our journey here.
I'd like to start by explaining Aspergers to those who may not be as familiar with the syndrome. First, the medical explanation: according to the current diagnositic standards, a person with Asperger's Syndrome must exhibit symptoms as described below:
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) 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)
(V) 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.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
I'm hesitant to describe the stereotypes that are often seen, as no two people with Aspergers look the same. As you can see above, there are many characteristics, but no one person is going to encompass all of them. There are some common characteristics: little/no eye contact, poor social skills, repetitive behaviors, and a strong interest in a narrow topic. I don't usually appreciate television for anything meaningful, but the show Parenthood really has showcased a child with Aspergers with some truth in my opinion.
But I digress.
Now, Samuel also happens to have an IQ is in the 98th percentile (meaning only 2 percent of the population his age share his IQ). This blessing does happen with some children with Aspergers, but please don't think that every gifted introvert has Aspergers. :)
So what did Samuel look like before we knew? Well, I dug up some old blog entries, journals and other writings and pulled out some that probably pointed to some of the characteristics. Enjoy.
January 2006 (1 year 9 months)
Samuel wrote his very first symbol all on his own–it was the number 6! He’s been having us hold his hand while he writes different letters and numbers–his favorites seem to be the letter ‘s’ and the number ’6.’ Well, tonight, we gave him his very first bath crayons, and he immediately asked Ken to draw a 6. Ken did, and then Samuel said, “Six,” again and drew his own six!!! We were amazed!!!!
Last night, as Samuel was helping me with the laundry, I found him so adorable, taking each article of clothing from me–one at a time–and every so carefully placing them into the dryer. When I’d hand him a large shirt or a pair of his Daddy’s pants, he’d make sure that every single corner of that piece was pushed all the way inside the dryer before reaching up for another article of clothing. He has an amazing attention span–it took quite some time to load that full load of wet clothes into the dryer–one sock at a time–but he did it to its completion, and when he was finished with his task, he shut the dryer door and toddled off to his next adventure.
He’s so routine-oriented. I know its toddler-predictable behavior, but it still baffles me that he insists on putting his left leg in his pants first, or that he wants a banana with his breakfast every single morning, no matter what else I serve. When his nighttime bath is complete, he becomes angry if we don’t immediately put him on the sink, so he can put his toothbrush under the water and brush his teeth (though he gets a little irritated when we help him too too much). He’s such a character, running and then closing his eyes tight, thinking that if he can’t see us that he has disappeared. He loves to be tickled and he loves to run hard and play hard and be such a little boy.
Then night comes and he is so sweet, hugging and kissing me and his Daddy before tightly holding my index finger as he drifts off to sleep. And, during the day, when I tell him that a baby is in Mommy’s tummy, he ever so gently rubs my belly–sometimes I think he’s wiser than I realize.
August 2006 (2 years 4 months)
Samuel continues to amaze me each day. I swear he’s a genius, though I know all mama’s think that about their babies! He can count to fifty, and has been doing so for months. He could recognize all of his letters before he turned two, and now he knows some of their sounds, and he can spell some small words. I swear I don’t “drill” him or force him to learn such things—he literally asks me to spell words for him as we’re driving down the road! Let’s see…he is quite the engineer *giggle* he loves to see how things work. Everything is “Bie-bol-self,” which means “by myself.” He wants to do it all—and this really helps me out–I can now give him the house key and ask him to go unlock the door while I’m getting Gabriel out of the car! His attention span is lengthening, and I’m really enjoying being able to ask him to do things—like when I fold laundry, I give him his clothes, and he goes in his room and puts the clothes away by himself.
November 2006 (2 years 7 months)
Samuel sang his ABC song in its entirety (all letters clear). He has known his letters by recognition, as you know, since he was one, but this is the first time he recited the song. I know–my silly Sam has to do things “backwards”–one-to-one correspondence first, rote memorization second.
And a funny for today: I told Samuel to hand me his piece of garlic bread. He held it out, and said, “Say pease.” I was talking to Ken, so Sam asked again, loudly, “Say PEASE!” That boy makes me giggle every day!
December 2006 (2 years 8 months)
I didn’t expect my two-year old to write his name!!! But that’s exactly what happened today.
He has always enjoyed scribbling (circles and lines and such), but one day last week, he announced that his lines were “i’s.” I took his cue, and started drawing shapes with a yellow highlighter so he could trace them, scribble on them, whatever. He’d tell me what shape to draw, and I’d draw it, and we’d play like that.
Well, the next day, he started writing u’s! This was without me interfering or showing him how to draw–he’s never traced letters before this–nothing. He just decided that letters were fun to draw, and so he did it.
So, anyway, the next day, my mom was visiting and he asked her to draw an ‘m.’ So she did, and she said, “Up, down, up, down,” as she drew it. Well, he started drawing m’s all over the page, and by the time he was finished, he had added writing i’s with the top and bottom on the uppercase letter, then t’s, L’s and u’s. Mama wasn’t teaching him–this child just decided he was going to write letters, and so he did.
Then today, his Daddy showed him how to draw an ‘S,’ and I later showed him an ‘a,’ so now he is writing his name all over the place. He says, “S, a, m spells Sam,” just like he’s been reciting, but now he writes the letters as he says it.
March 2007 (2 years 11 months)
This past week, Samuel has begun using the words, “Yes,” and “No,” properly. This is a big deal for him–he really struggled to understand this concept.
And he has mastered pedaling his tricycle recently.
June 2007 (3 years 1 month)
Dr. Barosso (Samuel's pediatrican) referred us to a developmental pediatrician. The appointment was today.
Sam was diagnosed as having Asperger Syndrome.
The appointment was 3 hours long! The doctor, herself, was with us for 2.5 hours–playing with Samuel and doing her tests, and asking us all sorts of questions. She said that he has obsessive complusive behaviors, rigid rituals, and hyperlexia (http://www.hyperlexia.org/hyperlexia.html).
3 years 6 months
In September, Samuel was evaluated by our local county’s school psychologist, and she also diagnosed him with Aspergers, but she added that he is gifted.
His IQ is somewhere between 130-140 right now.
3 years 11 months
I absolutely LOVE to watch Samuel’s brain at work. He puts things together that keep me completely off guard. Yes, the challenges of his disorder keep me on my toes, but getting to watch his brain work is amazing.
Today, he directed me to church–told me every road to turn on to from home to there (8 turns including two highways). The neat thing was—we were at home–he did it from memory.
He asks the name of every road if/when we go somewhere new, and then he puts all of it together in his head. He did it to get to his Nana’s house, his BB’s house, and his Grammy’s house, but now he’s added other places (gymnastics, etc). And today on our way home, he pointed out our church steeple from a bridge afar–the steeples and other tall buildings downtown were all clumped together from our view, yet he found it! The reason this amazed me was that no one has told him that the church was over there–he is a walking GPS system.
April 2008 (4 years old)
I could NOT be prouder of Samuel. He turned four years old this month. He has improved dramatically regarding his social skills–he is still behind his peers, but making progress each day. His language aquisition is behind as well–I’m hoping time will iron out the kinks and his inverted sentences will cease.
July 2008 (4 years old)
We have begun RDI therapy for Samuel. I'm excited as this will help him create new neurological connections.
By the end of today, Samuel was arm flapping, impulsively behaving, and slamming doors, for example. He was so defiant. I even resorted to punishments, not that it did any good. We're doing the fish oil, probiotics, and reducing casien and gluten from his diet. However, yesterday was one of my favorite milestones. Yesterday, for the first time, Samuel kissed me!
Since he was about two, he has been practicing the kiss. With an open mouth, he'd make the "ch" sound against our cheek. While endearing, it wasn't exactly a kiss--not in the way most of us think. There was no suction, or smack.
Still, we loved to get little Samuel kisses--as unique and special as he is. With his difficulty in mimicking others, I wondered if he'd ever be able to kiss someone in the NT way. I'd show him, and practice with him from time to time, but not with any consistency or determination.
So, I was super surprised, and amazed, when, yesterday, he smacked me right on the cheek! I couldn't get enough of it; and noticing my excitement, he planted enough kisses on my cheeks to make me blush! The four year wait was absolutely worth it--thank you, Jesus, for giving me such a sweet miracle this week. :)
August 2008 (4 years old continued)
Language and speaking:
Samuel's use of language fascinates me. I don't know if its related to Asperger's, giftedness, or a combination of both, but I love hearing things come out of his mouth!
When he began to talk, he had an extensive vocabulary as far as nouns were concerned. Speaking small phrases that included verbs, though, we a bit slow coming. However, once he started, he quickly spoke in complete sentences. It was kind of like a little professor, which is often the way Asperger's speech is described.
However, he doesn't fit the stereotype of having a "pedantic" tone. Actually, he
has always had a rather expressive tone; when he was two, lots of people would comment on the inflection of his voice.
Here are some things he has said lately that I found delightful and examples of phrases I've found interesting:
"Mama, I'm feeling jealous of Gabe right now."
"I want to go to the park! I'm very disappointed." [Said while screaming and tantruming]
"Mama, it's just hard to be obedient sometimes."
"I'm curious about that food."
"I'm a little nervous about going to this place."
"Gabe, my Mama said we can go outside!"
"Mama, my Dada said we can go now."
Ken: "I have to go back to Alabama this week."
Sam: "Why do you have to go back to beside Georgia?"
And this week's favorite:
"Is Mimi coming the day after the next day after today?"
December 2008
Callaway Gardens
A few hours away from us is a beautiful place called Callaway Gardens. Fifty-five years ago, acres upon acres of land was burnt up cotton fields in Pine Mountain, Georgia. Some very creative people filled the land with trees and plants and ponds and a massive vegatable garden! Today, it has miles of curvy roads surrounded by pine trees and vegetation that appears to be a forest that was always there! A vegetable garden is coupled with a massive flower garden! On one part of the property, there is a greenhouse the size of a large building filled with every breed of butterflies you can imagine! The building is a perfect temperature and has very high ceilings that rise above huge (real) trees and other plants. When we were there this weekend, 1,800 butterflies flew around the tourists, occasionally landed on people for awesome pictures!
My sweet sister and brother-in-law gifted our family with an overnight trip to see the gardens and the famous Christmas in Lights tour; in which 8 million lightbulbs showcase Christmas designs amid the trees that surround the lazy paved trails.
The weekend went beautifully and Sam and Gabe loved the attention their aunt and uncle doted on them! Ken and I also enjoyed ourselves and we are so grateful to Kimber and Corey!
There was a couple ASD moments, though. :(
First, when we were feeding the ducks in the pond, Samuel was super excited and running up and down the bridge, peering through the wooden slats for the best view. At one point, he pushed his way right in the middle of a mother and daughter; he was in their personal space in an inappropriate way.
I redirected him and apologized to the mother, but you should have seen the glare she showed Samuel. Even after I apologized, she continued to glare at Samuel, as if to say, "You're too big to do that; why would you invade us like that."
I was near tears; mostly, Samuel shows others very little if any evidence of his ASD. In the moments when he does something like this, and someone who doesn't know better shows dismay, I become a mixture of emotions: sadness for Samuel, anger, protectiveness, and grief. I can't even verbalize my feelings at that moment, but it continues to sit in the pit of my stomach.
The only other ASD moment was when Samuel became notably upset about entering the butterfly house.
See, they had a rule that we could not pick up the butterflies; alive or dead. If they landed on you, it was fine to let them stay and to take pictures, but we could not, obviously, touch their wings or grasp them in any way.
So, trying to prevent any little-boy-curiosity moments that went against the rules, we explained to Samuel that he couldn't touch the butterflies. We also explained that they may land on him, but not to touch him.
Well, Samuel immediately became frightened, claiming that he did not want any butterflies to touch him, and that he was afraid of them. Now, this is the same little boy who spent an afternoon with is Aunt Kimmie this summer, both of them trying to get a butterfly to land on them.
Anyway, we attempted to calm Sam, but he was loudly tantruming, screaming, and crying. Up until recently, in public situations, his tantrums seemed age appropriate. But, now, he is so big--he is tall for his age as it is--and, so, I see the looks from strangers.
And I admit that I may be seeing more because of my sensitivity and protectiveness; but the looks and glares were there, nonetheless.
And, now that I understand, through RDI, that he struggles with referencing, he couldn't be calmed with our reassurances based on our experiences. *sigh* Fortunately, between the four of us, we were able to convince him that he did not have to go into the butterfly house if he didn't want to go. We opened the door and went in, ourselves, and he followed, not knowing that he was now in the butterfly house; I hated that, but was glad, in a way, because I doubt he'd have gone in otherwise. As he began to freak out, Ken promised him that he would not let a butterfly touch him; that calmed him down. (The butterflies certainly would not land on a hopping little boy who didn't it; heck, it was hard enough to get them to land on you if you really wanted them to.)
And those were our ASD moments at Callaway Gardens. I did notice an increase in his arm flapping, non-meaningful why questions, and stimming sniffles; but I doubt anyone at all noticed those signs. And I am so glad that he really did enjoy himself--he definitely wants to go back someday!
Christmas program:
This was his very first school year, and having a Christmas program. I was so excited about it; anticipating his participation.
I admit; I was disappointed when he stood there uncomfortably, rocking back and forth or playing with his sleeves or the blonde hair of the girl standing below him. It broke my heart to see him not enjoying the event.
I was, though, so proud of him for staying up there with no tears. Sure, I wish he'd been more comfortable and happier. I know the crowd was stimulating, as was the lights and music. I am so proud of him for working so hard at getting through it!
Christmas with ASD:
Whew! I really, really enjoyed Christmas this year! I loved seeing the boys' reactions to it all--the lights, the music, the family gatherings, the food; and, yes, the presents. :)
I think this is the first Christmas in Samuel's life that went this smoothly for him. His relatives who support him continued to do so, and the not-so-supportive one kept quiet. As a result, I don't think he behaved in any way that would raise eyebrows from those non-skilled in autism.
He did stim a lot; I bet I'm the only one that noticed, though. And, sure, his arm flapping increased; and, yes, we did have a few meltdowns. Overall, though, he was able to handle the extra stimulation better than I had hoped! I know he has worked so hard and I'm so proud of him! I also think my determination to keep his supplements going every day helped as well. I haven't always been consistent about that; I hope to do better this year.
As far as RDI goes, this week we're practicing slowing down our language when interacting with Sam. I am amazed at how it is working--I use the exact same words, but say them slower, and he responds a LOT better! Even my NT child, Gabriel, has benefited from this change!
I'm looking forward to seeing this year unfold.
January 2009 (4 years 9 months)
This past week, Samuel's brother started "2k." Because his big brother goes to school, Gabriel wanted to go, too. He's been on the waiting list since last spring, and when a spot became available, I asked him if he wanted to go, and he said 'yes.'
Anyway, I sat in the classroom for about an hour observing Gabe in his new classroom. Watching him interact with the other children made me so happy for him; yet so sad for Sam. I hate that part of autism---Samuel's immature social skills. Gabe is doing, at age two, what Sam isn't able to do at age four.
And it's not that Sam can't interact with others. He loves other children. He treats them more as toys than friends, though. And since he was tiny, I've noticed the difference; but seeing my two year old master the social world with such ease just really made Sam's struggles seem so big.
I am so glad we're doing RDI! I don't know what I would without it.
In case you haven't read about RDI, it's a method that takes the milestones of dynamic intelligence (that is developed between birth and age three in typically developing children) and breaks them down into microbites; then the consultant and the parents create opportunities to engage the child (or adult) so that the brain develops the connections naturally. This is different from ABA (applied behaverial analysis), which uses rote, static intelligence to teach the child step-by-step formulas to follow in specific situations.
Now, note that I'm not saying ABA is worthless; it has helped a LOT of people accomplish major strides in development. It definitely has its place in the world of autism, in regards to teaching static skills (like toileting, focusing on a task, etc...); but it does not remediate the autism. So, for someone like Samuel, if ABA was his treatment, he'd still be socially awkward--you can't "teach" every single possible type of interaction.
And this leads me to today. Today Samuel went to a birthday party, and I saw his disability in a whole new stage of development. And...well..it broke my heart.
The birthday party was wonderful! The mother went all out with lots of activities that centered around a specific theme; and she engaged the boys in fantastic play at each station. The boys at the party were the boys from their preschool class, so Samuel knew them all and plays with them all on a regular basis.
So, he was in a fun situation that he'd naturally enjoy, and he was doing it with a group of peers that he plays with every Monday through Friday.
Yet, he was so alone in his own world. Whereas the other boys would chat with one another and laugh together, Samuel was by my side the entire time. He'd stand in line for an activity; then run back to me while the other boys' moms stood on the sidelines and watched their boys engage with one another within a group that seemed to be held together with imaginary rope.
He looked so out of place. Here he was, one of the tallest boys, and yet he acted soooo young compared to the others. The blank look on his face when the other children giggled at the cute stories at the stations just hurt my soul.
When we approached part of the party where we were in a semi-dark room with music and bit of chaos, he began to cry and I had to take him to another part of the house. Before we left the basement, I tried to reassure him and help him. He just got more upset, and his arm flapping was so obvious. The hosting mother was so sweet, and really reached out to us to try to make Samuel as comfortable as possible. The other mothers kept saying reassuring comments like, "Ladonna, he really is doing well, though!"
And he was doing well. He was. But he still stood out. And he spent the majority of the party with a tense expression or a look of discomfort. He just wasn't involved like the others.
When it was cake time, he stood against the table like the other children, and I was so happy to see that. But when the other children began conversing and filling their plates, Samuel was fixated on putting bugles (a type of snack chip) on all his fingers. (If he had been doing that and showing the other boys, or atleast laughing with someone about it, it wouldn't have looked so obvious.)
After cake time, there was a bit of free play before the transition to gift opening time. Well, Samuel had been fixated on seeing AJ's "race car tracks" since days before the party. So, he began asking other children if they knew where to find the playroom. The scene keeps popping into my head: The boys are all encircled around a balloon that they are hitting back and forth and running and laughing. Samuel is not involved and seems to be unaware of the play. Instead, he taps a little boy's shoulder and asked him if he knew where to find the playroom to see AJ's racetracks. The other boy kept walking away from Samuel, showing every bit of body language that said, "Leave me alone right now; I'm enjoying this game." Samuel just continued to follow the boy, pushing to get in front of his face to ask him the repetitive question. He finally gave up and came to me to let me know that (a) he tried to ask Kevin about the playroom, and (b) to find out if I knew where to find the playroom. Not unlike many other children with ASD's, he was more interested in the objects than the people; totally missing the point of the party.
I probably sound dramatic; and I realize that I could be watching something much worse in regards to my children, but that doesn't take away the heartache I feel when I see him unable to relate to his peers. When the children were two years old and three years old, these kinds of things weren't really noticable to others. Today I realized how obvious it's getting; and I am just so, incredibly thankful to our RDI consultant and ALL that she is doing for us! With RDI, he will be able to relate to his peers one day....it may be a year from now or ten years from now, but he is finally on the right path to filling in this quickly widening gap.
February 2009 (4 years 10 months)
Who says Aspies can't communicate feelings?
Samuel blew me away today. He was assembling one of his Lego projects (a boat) when he asked me to play with him. I was cooking lunch, so I got the chicken in the oven, and said, "Sure," and sat down.
He broke out in a massive smile and literally said, "Mama, thank you for giving that up to play with me."
After I caught my breath, I told him, "Oh, honey, you're welcome! I love spending time with you."
He repeated, "You love spending time with me."
Changes:
Samuel is, of course, routine driven. He has *never* disobeyed at school; it's just something he doesn't do. He takes on rules as part of the routine; this is very typical, as most of you know, with Asperger's Syndrome.
Well, today was a different story. See, at his school, they do that behavioral chart thing where the children are "on green, on yellow, on red" depending on their actions. Since the beginning of school (August 11th), Samuel has never had any color except green. Period. I've never heard anything from his teachers except, "He had a good day."
Well, as I said, today was different. Samuel "got yellow" today. The note said that he was running around the classroom.
Here's another variable to the story: I have, once again, become slack on giving him his medication. I feel terrible for doing that; I'll do it perfectly for months and months, and then I'll forget one night, and it goes downhill. Since the medication is only an anti-yeast and fish oil, I somehow justify it that he's not really in any danger. *sigh*
So, I'm trying to decide if today's incident is due to his lack of medication, or if he's beginning to break out of the autistic shell by testing his boundaries at school? The latter, of course, would be wonderful! It is amusing...how many parents get to celebrate their child "getting into trouble" at school? With us, it means Samuel is becoming more dynamic and breaking out of the static system of blindly following "the schedule/routine" at school.
But, because he has had difficult behavior at home the past two days, I wonder if it is just the medication (the lack thereof). Oh, and yesterday, Sam's teacher told me that he acted teary..that he was about to cry, which was unlike him. I need to ask her more details about that. So, see, adding the out of norm weepiness at school, plus the violent behavior at home, plus the misbehavior at school today, to me, adds up to lack of Cod Liver Oil and Nystatin. But, it really could be his way of reaching the next stage. He has been sleeping more and eating more lately, and he has had a huge physical growth spurt.
So many variables...
Anyway, time will tell. Meanwhile, we came home and he received a dose of Nystatin :)
Polite obsessions:
Today as I was driving down the road, Sam and I were discussing seasons and the changes in the trees, when he stopped me, saying, "Mama, excuse me for interrupting you, but I need to count these houses."
And he then proceeded to count houses. For what purpose, I don't know, but, hey, at least he was polite about it.
July 2009 (Five years old)
Overcoming the obstacles at age 5:
Autism seems so unpredictable to me. Samuel has been in RDI therapy now for about a year and we can already see massive improvements! The teachers at his preschool insist that they can hardly notice any difference between him and his peers. I thank God for that blessing--that Samuel is now able to function in ways we only dreamed of a few years ago!
Sometimes, I even forget about the autism. I see Samuel first as his self, and then I see him as a "normal" five year old boy. (What is 'normal,' anyway???) The autism, or Asperger's, or whatever this year's diagnosis includes....well, that rarely enters my mind in our day-to-day lives. Sure, there are RDI objectives we work daily, and those are in the forefront of my mind. But the objectives are so individualized that I see them as steps towards Sam's development; not as "autism skills."
Anyway, I bring that up to say that when something that screams 'Asperger's' or 'autism' presents itself, my heart strings get pulled a bit. It's like a wake up call. It's like a red flag that reminds me of the work that lies ahead.
And that's okay--I'm so excited about Samuel and who he is. He is so smart and so delightful, and he makes me laugh daily. He is such a gift. I just hope that I can be the mother he deserves--a mother who can help him overcome any difficulties that exist along the way.
This week, I rescheduled his gymnastics class. We did this once a couple years ago, when he was 3, and it was a disaster. At the time, I simply didn't want to accept his inability to cope with change---I tried to force him into the class as he screamed in protest. What was the big deal? The same teachers were there--the environment was the same. Instead of sympathizing with him, I chose to bribe him, threaten him...grasping at straws in a hope to get him in there and enjoy himself.
And when he tantrumed, and when we realized that our only choice was to leave, we walked past glares from the parents who don't understand. The parents who don't understand autism...the ones who see Sam as defiant, or out of control, in those perilous moments.
But here we are--at age five--and things are so much different now. Sam copes with change soooo much now! He has adapted...and not just learned to survive change, but he thrives and enjoys himself. His anxiety exists, but it is so minimal--the handflapping is all but gone--the finger twisting is mild--and he's able to enjoy the moments, and look forward to surprises and excitement and just the typical stuff that five year olds experience in school and play.
So this past Thursday, when we walked into the gym, I didn't think for one minute that he'd be unable to walk into that class and act the way he acts when he's in class on Tuesdays.
And he started out fine. He took off his shoes and socks and played in the play area with his brother while waiting for his class to begin.
And then class was called. "Sam," I said, "It's your turn now."
Wow. All of a sudden, he was in full anxiety...tears creeping into his eyes, body language that dared me to walk him inside.
I tried do convince him to go in by reassuring him. "What's wrong, Sam?" I asked. "Mama, this is not my gymnastics day! It's different," was his reply. As I gently walked him towards the gate that separates the gym from the waiting area, he pushed backwards as hard as he could, and elevated his voice, and began crying, and began losing control.
But here's the difference from today and the experience two years ago: I changed. I have watched the other mothers with children high on the spectrum like Sam. I watched these mothers with their seemingly "normal" children when they began to "over-react." And these mothers didn't tramatize their children by trying to force them into the "neurotypical box."
I am soooo grateful to God that I have found these wonderful role models.
Because this time, I remained calm. I realized, "Hey, this is just the way Samuel's brain is currently wired. Is it really the end of the world if he misses his class this week? Sure, we need to work on adaptability, but does he have to conquer it right now when he's clearly overwhelmed and stressed?"
And from that realization, I kept a neutral expression and tone, and gave Sam two choices--either go inside, or put on his shoes and we'd go home. With a massive sigh of relief, his tense body relaxed and he put on his shoes and said, "I want to go home."
And in these moments, I wonder---who really needed to grow? Five year old Samuel, or his mother who still struggles to find the fine line between pushing him to grow and comforting him when it's all just too much.
I have so much to learn.
November 2009 (5 years 7 months)
Samuel's progress has been absolutely AMAZING! Sure, we credit God first...He gets all the glory no matter how He creates the miracles that have occured. Secondly, I know that stopping vaccines at 18 months has made a world of difference...experts can fight and argue over proofs and non-proofs and what causes what, or what could trigger what, but I know that my child's body is sensitive to the toxins in those things.
RDI, though...I wish everyone I know who has a child on the spectrum had access to this amazing resource. Its so sad that in the world of autism, research leads application by TWENTY YEARS! That would be spashed all over the media if it were heart disease, or cancer. Sad, but true.
Anyway, back to Samuel. RDI treatment has helped him cope with uncertainty, develop a sense of security within a dynamic world, and, most recently, develop healthy episodic memories. Most people in his world have no idea what those terms mean, but they'd definitely notice if he still struggled, because he'd be exhibiting meltdowns, unusual "fears" and other behaviors that would bewilder and alarm caregivers.
Instead, I get reports from teachers in which they declare, "He doesn't seem any different than my other students, socially." Though the subtle differences are there when reviewed by ASD experts--differences that would be obvious at age 8 or 10--I am THRILLED that his differences are mostly non-observable by most people now. Think about it...if that's the way the world sees him now, then think of the progress we've made. I think about the comments from others just three or four years ago...how much he has grown. The biggest human credit, of course, goes to him and all the work he has done to undertand this dynamic world in which the rest of us live. This child has worked so hard...so, unbelievably hard..and most people don't have a clue all he has had to endure to learn the skills we take for granted...all the while, staying true to who he is and being his amazing, unique self.
December 2009 (5 years 8 months
December 7, 2009
I often forget about Samuel having Asperger's Syndrome in our day to day life. He has such a full life with so many fascets to himself. Asperger's is not his identity....and he is blessed to have received such amazing treatment, so I often find myself minimizing his symptoms.
And even family members and friends "forget" at times. See, while Ken and I get the experience, through doing RDI, to see exactly where his development gaps lie, most people don't see "anything wrong" with him now. I love it--he's come so far.
But, days like this past Saturday sting my face like frigid wind. That day, my friend, Kristy, and I decided to visit a new place of worship. We were excited that our children would have each other, as that would make their new experience fun and the transition easy.
And it was for Katie, Gabe and Steve. But it was not so easy for Sam.
It all started when we first got there. We sat down in the santuary just as a loud horn was being blown. Then, the music began and worshippers began to sing. I was shocked when Samuel began to "misbehave;' jumping up out of his seat, running to the back of the room to touch the drums, and climbing a banister. He was doing things that I know he knows not to do, if you know what I mean. Honestly, if my three-year old had been doing these things, I might would have understood him as being a typical toddler. My three-year old, though, was swaying to the music and flipping pages in a hymnal.
Then, later, the children went to the front to put an offering into the plates. The two youngest boys (Gabe and Steve), and Katie (Sam's age) all easily figured out how to master this simple task. Sam, however, was so overstimulated, that he couldn't focus enough to figure out where to walk and what to do. He wandered around a bit and then came back to me just as they were finishing up. Well, now realizing that he missed the opportunity to put the money in the plate, he began to scream. Loudly. With tears running down his face, he buried his head in my lap and yelled, "They didn't let me do it. They didn't let me do it!"
I was taken aback. Memories of these types of moments flooded my head....memories of defeat in which I couldn't figure out how to soothe him. No matter what I'd offer...an explanation, a promise, a "consolation prize," ..... whatever I tried, he'd just scream for what felt like forever! So here we were, in a church...me trying to remain calm, but hoping and praying this doesn't become like those moments that I thought were buried in our past.
It did.
He screamed and yelled and nothing would soothe him. I learned years ago that continual chatting just confuses him more...its like trying to reason with a tantrumming toddler. I just held him. Thankfully, five years of parenting has thickened my skin, and the worry of others' stares were beyond me.
So, once he calmed down (still crying in my arms, but no longer screaming), we walked towards the classrooms with the other children, and as we passed an offering plate, I asked him if he'd like to put his money in it. He did, and the crying stopped.
For the moment.
He gaily strolled hand-in-hand with Katie towards the classrooms. He walked in, looked around, and froze. He timidly stood at the table where Katie was now seated, and then ran back to me, tears running down his cheeks...begging me not to leave him!
This is the reason that we are working on episotic memory in his RDI program. Episotic memory is the ability to accurately encode an emotional memory. For most of us, when we overcome a difficulty (like beginning a new class), we encode our success. Thus, we develop perservereance. Samuel has had plenty of new classroom opportunities to encode. He is in a church kindergarten right now, actually, and this is his fourth class he has had since joining the school. Each year, we go through a day or two of him screaming as I leave him. Even though he winds up loving it, and spends the rest of the year separating from me easily, that first day or two has him so anxious.
Its so hard to see him scared like that.
I hate it. At least now, at his current age/developmental stage, I can somewhat reason with him. In this incident, I calmly held him and reassured him that I would not leave him until he was okay with it. Then, once he calmed down, I reminded him of his previous new classroom experiences. He cried, "But, Mama, I don't know any of these children except Katie!"
"Yes," I said, "But you didn't know any of the children in your balloon class, either, until you started." But this kind of logic is difficult for someone who can remember, but not with the emotional connection to the memory that the rest of us experience.
And I'm grateful that we're helping Samuel achieve this neuroconnectivity with RDI. Meanwhile, though, I'll have to help him wade through these experiences, one at a time.
August 2010 (6 years 4 months)
How does a week in Samuel's life look right now? (I'm meaning in regards to his Asperger's). Well, a church activity gone awry (the routine was broken, so Sam couldn't cope and ran away from the teachers to find me) left me realizing that education still needs to happen for all volunteers and teachers (the teacher told me that I'd better take Sam and try again next week since they don't have the experience/training to handle that kind of thing). More RDI is yet to happen, as Samuel stood out at the museum recently when he insisted a lady turn off her cell phone in a dark room (yes, it was true that she should have turned it off; but the fact that the broken rule bothered Samuel so much shows he needs more rewiring/practice so he can learn to enjoy an activity, even amid rule breakers). Each week brings little incidents like that...most are minor, and for that, I am extremely grateful. So many of my friends have children on the spectrum with daily "issues," and even more have hourly "issues," so to have ours spread out is an incredible blessing.
School is about to begin for this year. Homeschooling was something I was leaning towards as a parent even before I was blessed with a child with Asperger's Syndrome; but it is the only option at this point for Samuel. I'm not pleased with any other options in our area. Unfortunately, the public schools in this area focus on behavioral therapies, still. (This is the case for the majority of the United States right now. Did you know that in the realm of autism, the research has averaged 20 years ahead of practice? This would be a crisis in an area of medicine like cancer! In autism, people were institutionalized WAY after research showed that behavioral modifications could affect a person's success. Now research clearly shows successful "rewiring of the brain," though programs like RDI, but the change at the therapy level has been so slow. It'll change...mark my words...but by then, my Sam will be an adult. I want him to reach his fullest potential NOW, so he can have a happy, rewarding, and successful childhood AND adulthood! :)
Our journey begins.
October 2010 (6 years 4 months)
Sometimes Samuel's symptoms are worse than others. On the "flare up" days, I really feel the pull to get in more RDI.
Yesterday, as a family, we visited a local pumpkin patch. Before that, though, we had soccer games. Sam's Asperger's shone in my radar as I watched him on the soccer field. The bright sun just simply bothers him more than the typical child, and watching him struggle to shade his eyes while the other children just rolled with it was obvious. Then, when his brother had his turn to play, Samuel couldn't just sit and enjoy watching. He begged and begged to play a game on my cell phone (of course, I told him 'no.' It wasn't a child simply wanting something to do...it was a child obsessed). I tried to engage him, and he enjoyed my attention..all was not lost, but challenged continued.
After their games, in the car, Gabriel decided the trees beside the interstate were 'space trees' from outer space and were going to take off. Samuel decided to throw a fit because, in his words, "those are real trees, Gabe; they don't go outer space!" "Sam, please just pretend with me," my four year old pleads with his brother. My heart wrenches.
I'm glad most days aren't like this.
