If you do not want to read about some of the challenges, please skip this post!!
Let me just share some of the differences I saw in Dougy from birth to 7 (the time of his diagnosis).
As an infant and a young toddler, he did not like to be thrown in up in the air or held up away from your body. His whole adorable little body would stiffen and shake. I was a young, single mom in college at the time and I didn’t think much of it.
At 18 months he hadn’t really said his first words (but boys are late talkers...right?) and he just started walking around 16 months. What really started getting me worried is when he started lining up his foam blocks by color and shape (refusing to stack them). Again I just though he was “particular!”
The next thing he started doing was the clincher....
He started lining up my high heel shoes in perfect left to right pairs down the hall. He was OBSESSED with doing this. One day one of my heels (disclaimer: I no longer wear heels, all TOMs and BOBs for this lady) was kicked under the bed. Dougy got all of the pairs lined up perfectly and got down to the last lonely shoe and went frantic looking for it’s match. He couldn’t find it in the closet and threw himself down in a whopping fit of fury. I saw the heel under the bed and quickly retrieved it and showed him. He started what I can only call “nervous laughter,” took the shoe from me, and lined it up by its match. He then went on his merry little way like the world was just made complete.
At around 2 years of age, his babysitter said she was noticing he had some interesting behaviors (man she was a trooper all of those years!). He would NEVER eat peas at her house (surprise surprise I HATE peas) but he LOVED cheese. So the babysitter lined up cubes of cheese and peas in a row (cheese-pea-cheese-pea....you get the point) and to much surprise the little guy ate all of the peas when it was arranged in this pattern. I didn’t know what to think and didn’t pursue any testing at that time. His pediatrician did talk to me about being his speech being a little behind.
Every night I read him stories and we had the same bedtime routine (bath, story, and bed). I usually stuck to one book every night for a month (I was told that repetition was a good language building technique). One month we read Dr. Suess’s ABC book. I never thought to teach him the ABC song because he was so little and didn’t talk. One day he surprised me and just started naming letters randomly on a puzzle (“q, r, z, t, f, l"). He wasn’t naming them in order, so I tested him. That handsome little fellow knew every letter but could not talk. It was truly amazing! The next month I read him the Brown Bear books and he started making animal noises (he wouldn’t name the animal but would make the noise).
Soon after Dougy’s 2nd birthday I started dating my now husband who really was Dougy’s gateway into adaptability (this will be explained later). He encouraged me to seek out help and we finally had him tested for sensory processing disorder at age 3.
Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists
when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and
neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the
brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it
difficult to process and act upon information received through the senses, which creates challenges in performing
countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other
impacts may result if the disorder is not treated effectively. source: http://www.spdfoundation.net
Here is my definition of SPD: Dougy could not regulate his body when receiving sensory input as well as others. His flight or fight response was ALWAYS on! He couldn’t handle tags in his clothes, he walked on his tip toes, he screamed bloody murder if light got in his eyes, he didn’t like people touching him....... there are many more but who wants to read all of that! He had countless meltdowns over this kind of stuff. His OT (occupational therapist) started seeing him weekly at age 3 and put him on a Sensory Diet (this is not a food thing! ha ha), they also worked on vestibular, sensory, proprioception, and fine motor skills.
Sensory Diet: "The daily total of sensorimotor experiences needed by a person to
adaptively interact with the environment.” -Hanschu
Purpose of the diet: To assist child in self regulation. Unusual behaviors may be a result of poor regulation from the nervous system.
Goal: To utilize sensorimotor strategies to attain an appropriate state of readiness (calm alert state) to learn during the day types of input utilized: vestibular, proprioceptive, oral motor,
and tactile source: https://www.autism-mi.org/
My definition of a sensory diet: His OT told us to do different activities throughout the week to help regulate his discombobulated sensory system! This included wearing a heavy backpack (some kids wear weighted vests for this same purpose), carrying heaving things across the room, hand hugs (squeezing his arms up and down to calm him), and other sorts of things. We also started therapeutic horse riding (hippo therapy) and they did a ton of different motor activities while on the horse to work on proprioception and vestibular issues. Proprioception is the concept of knowing where your body is in space (body awareness) and
the ability to safely maneuver around your environment. It also includes the use of heavy
work activities and the ability to stimulate the joint receptors.
source: http://www.nspt4kids.com
The Vestibular System, which is a contributor to our balance system and our sense of
spatial orientation, is the sensory system that provides the dominant input about movement
and equilibrioception. Vestibular sense provides information related to movement and head
position. The vestibular sense is important for development of balance, coordination, eye
control, attention, being secure with movement and some aspects of language development.
source: www.spdaustralia.com
Dougy was developing, having continued difficulty regulating himself, and EXTREME behaviors emerged. My challenge from here on out was deciding “is this a fit of a normal three-four year old or is it a sensory meltdown??” I just started treating everything like it was a sensory issues and my son NEVER got consistent discipline (I would not let his step dad discipline him.....oh how silly I was). The behavioral specialist taught me that EVERY negative behavior has a consequence EVEN if it was brought on by a sensory issue.
WHAT?? So punish my baby for having SPD???
Well no that is not what he was saying. Dougy needed to learn that if the light was in his eye, he could not scream mama and throw a fit. What he could do was go back into a dark room or ask mama to turn the light off. Hmmmm try teaching that concept to a 3-4 year old! This is when I made him a behavioral consequence chart with picture symbols. (See the photo below of his first one, it was made with a program called Boardmaker). Anyways this started working after many (and I mean MANY) weeks of sticking to it.
So remember how I said my husband was Dougy’s gateway into adaptability? Let me explain! Mike (my husband) never treated Dougy any different then his two sons (my lovely step children, who are 7 and 9). He knew that Dougy didn’t like wrestling, being held upside down, or being swung around. That was the EXACT reason he made it a point to do those things every day with him. It was torturous for me as a mother to endure (listening to Dougy scream like you were cutting his toes off one by one as he was being played with) but looking back now, I know it was one of the most influential pieces to him becoming as functional and adaptable as he is. When the boys were wrestling in the living room, poor Dougy tried to stealthily scale the wall hoping that Mike wouldn’t see him and make him join the brawl. Every time he was caught he would scream and scream and scream (very entertaining to his brothers)! I am happy to report that now he tolerates and sometimes enjoys these kind of things!!
At age 4, along with all of his sensory issues, imaginary friends starting emerging (by the way I read it was normal at age four). Dougy’s first friend was Lightning Boy (three other friends emerge from ages 5-7 and they still grace us with their presence to this day! ha ha ). I will introduce these guys in a later post.
At age 5 he started Kindergarten (he is a summer baby). I decided to start him early because at this point his language was caught up and he had all of the pre-kindergarten skills down (letters, numbers, shapes, colors, writing his name, ect...) His kindergarten teacher was given a heads up about the SPD and he did surprising well in school. His sweetheart of a teacher started “sheltering him” in class and I had to beg her to make him deal with it. For example: Dougy didn’t like carpet time because the other children were too loud, too close, and touched him. He ended up covering his ears and rocking during carpet time. His teacher then told me that she made the whole class whisper and give Dougy space to help him. Ummm that was sweet but NOT what was best for Dougy. I asked her to give him a choice to sit at the back of the carpet away from the other kids or maybe by her but the other students certainly did not have to whisper! She did this and Dougy got used to carpet time (let me say now he can handle it). Dougy was dismissed from OT at this time after 2 years of it. We were to continue his sensory diet and help him at home. So with school came a new demand on structure and routine. Dougy had difficulty getting everything he needed to do for school done in the morning. (He had to eat breakfast, get dressed, brush his teeth, get shoes on, and get his backpack ready). By the time his brothers were finished he was still zoned out at the breakfast table or sitting on the couch with one leg in his pants. To tackle this issue I made a visual schedule. This schedule was posted in his bathroom (see picture below) and he checked it many times while getting ready. One day his brother was in the bathroom when it was time for him to brush his teeth. I told him “Dougy why don’t you just get your shoes on since your brother is in the bathroom.” He then went into full panic mode because on his schedule shoes come AFTER brushing his teeth. I soon realized then how rigid my angel was. My next step to helping him adapt was making a changeable schedule that I purposely changed from time to time to help him adapt to change. Once he got that down we had an issue with the time it took him to complete all of these simple tasks. His brothers usually took no more than 20 minutes to get ready. Dougy took anywhere from thirty minutes to an hour. So to address this I started using a visual timer for each task (on the iPad). He had a consequence if he didn’t finish the task before the timer ran out. This WORKED!! (thank goodness).
From ages 6-7 as social demands started getting stronger we noticed that he struggled interacting with other kids at school and was often alone at the playground. He did not understand normal boy “teasing,” sarcasm, or jokes. I resisted getting him tested (because in the back of my mind I thought, "it's just a sensory thing right??")
I finally decided that I needed to get some more testing done. Dougy was tested with two different assessments that looked at autistic tendencies. Both test showed he exhibited characteristics consistent with a child on the autism spectrum.
So I said to myself “ok I am aware that he has tendencies but it still could be related to sensory processing disorder, couldn't it?.” We then started seeing the behavior psychologist again (behavior was a consistent issue). He reviewed the autism test and agreed with the diagnosis. Dougy started speech therapy soon after to address social skills. I had heard of a behavioral pediatrician who was an autism expert and looked her up. I thought to myself “okay if this doctor agrees with the diagnosis.....maybe it is true." We made an appointment and went to see her. This first visit was interesting, she was impressed with how functioning he was and how adaptable he seemed. She then praised me and my husband for the work we did with him! (Made me feel validated!). She then said she confirms the SPD diagnosis (sensory) but didn’t want to diagnose High Functioning Autism yet. YET???? What does that mean? At that time the doctor ordered a Pragmatic Language Test.
Pragmatics refers to the social language skills we use in our daily interactions with others. They include what we say, how we say it, our body language and whether it is appropriate to the given situation.Pragmatic skills are vital for communicating our personal thoughts, ideas and feelings. Children, adolescents and adults with poor pragmatic skills often misinterpret other’s
communicative intent and have difficulty responding appropriately either verbally or
non-verbally. source; http://www.therabee.com
My definition of pragmatic language: Understanding the social world. You have to understand I was Dougy’s social coach everyday (I would constantly prep him for what may happen and how to handle it). So we got the Pragmatic Language testing done. I was sitting at the clinic while he was taking the test and envisioning his genius answers to the questions. Well it turned out he had a moderate delay in pragmatic language (more than one standard deviation below the norm). I asked the therapist who administered it to review his responses with me and I was shocked that he didn't get some of the social situations presented in the test. (I thought I had prepared him for all of those social scenarios...... guess not!!!!). The results were sent to the specialist and she confirmed the diagnosis in September of 2013.
What did this diagnosis mean???? Absolutely nothing! He was still my handsome, quirky little dude!
So now that you know some of the history we can get to posting about the quirky fun stuff.
Next post-----> Imaginary friends
I live with 4 non-existent creepy dudes!
This post is about Doug's background is specifically what we went through with him. Please do not use any of this information for informative purposes about any diagnosis or treatment. Seek out professional help if you have questions relating to SPD or HFA.
Clipart was obtained by permission through a paid license with smartysymbols.com
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