Thank you for taking time to read our story. With more focus
and attention I hope the Aspergers will become better understood. I think that
is the biggest obstacle that our family and our son faces everyday. In our
family our son who at the time of this story was 7 years old has been diagnosed
with Sensory Processing Disorder, DCD (more along the lines of Developmental
Dyspraxia), and Aspergers. Although he has a diagnosis of Asperger's it
would be along the extremely mild end of the spectrum.
Our story begins when our son was born. He had a complicated birth. After a 40 hour labor he had a posterior birth which resulted in his heart beat dropping dramatically and they had to use forceps. He was placed in the NICU immediately in an oxygen tent for his labored breathing. He had difficulty latching on to breastfeed and was never able to breastfeed. At home he tended to be a fussy baby. He was easily woken up by noises and needed vibration to help him sleep. He had constant tummy problems frequent constipation and we had to eventually switch him to a gentle tummy baby formula. In addition to the tummy problems he had ear infection after ear infection (20 in all since he was born) and multiple sinus infections. He has also had RSV, Croup and Swine Flu as he grew up. As he grew up the tummy problems continued and when he was three he had bouts of vomiting and his constipation turned in to frequent diarrhea. We eventually restricted lactose consumption which helped a lot. In addition to helping with the diarrhea it also helped with behavior. We have also added acidoplolous which tends to help the tummy aches and keep him regular.
Developmentally speaking he reached most of his milestones on time. He didn't really crawl but mainly army crawled and then went straight into walking at 1 yrs old. I did teach him baby sign language which he started using at a year and 1 mo. Within two months he was picking up words so easily he stopped using the sign language. From there his language was growing by leaps and bounds and by the time he was a year and a half he was using words like temperature and octopus. To this day he has an extremely advanced vocabulary.
When our son was young the things we noticed the most were his coordination and sensory issues. He was constantly spilling things, tripping, and running into things. He had no concept of personal space and would play to roughly with kids when he was excited to the point of hurting a few of them. He was constantly jumping, climbing and spinning. He also had a problem with background noise and became a completely different kid in a loud restaurant or at big family gatherings. He also has a very strong sense of smell. Although he loves to smell things, strong bad smells can prevent him from playing with someone or going into someone's house.
As a toddler behavior wise he had a strong sense of justice or fairness to the detriment of playing with other children. If someone broke the rules or was mean our son would react with aggression. Discipline was extremely wearing - we tried everything from punishment, to time outs, to rewards, to 123 magic and nothing worked. He had frequent melt downs that could last up to 2 hours where he would repeat himself, scream, cry and kick things. He had to be under constant supervision especially when he was playing with other children. I mentioned the huge melt downs and coordination problems to our pediatrician and they said oh he's just a boy this is normal.
School Age
Kinder-prep was a great year. His teacher was very understanding and compassionate. The class was a small class of only 10 kids and that gave him a chance to work on his social skills. Personal space, coordination, and motor planning were still an issue. This year there were a few times he refused to do fine motor class work. He also got in trouble for a few aggressive instances. Once he threw a shoe at his classmate and he also punched a fourth grader in the face for not letting him play basketball. Again most of the aggressive instances involved perceived rules and fairness. I requested testing be done since he such a hard time with fine motor issues. I was directed to our area Early Childhood Development center. They tested his vision, hearing and some developmental testing - a very short and limited screening. They didn't find any problems.
At this point he had been going to a private catholic school and I was starting to get concerned especially with his social skills so we decided to make the move to Kindergarten in the public school system. I just wanted to make sure if he needed screening or special education it would be available.
Kindergarten was my son's hell on earth year. His Kindergarten teacher was very controlling. She thought my son was very smart but lazy. He was constantly being reprimanded for not making eye contact and berated for his lacking fine motor skills especially hand writing, coloring, and cutting. She labeled him as defiant, un-empathetic and a behavior problem. She even went so far as to call him a liar multiple times because he would not make eye contact or in cases where he wasn't aware for running into some one, he denied it. Everyday I received an email of my son's failures in the classroom. Out son's coordination problems tended to get him in trouble running into kids, accidentally pinching fingers between chairs when scooting up next to some, not noticing another child's fingers were by his locker door and pinching them in the door. All these things were accidents but he was being told he did them on purpose and was making bad choices. In addition to the coordination problems his processing speed came into play when he was faced with social situations. If he did run into someone he was confronted immediately and was required to give an answer. He has a hypo-sensitive proprioceptive system and most of the time doesn't even register that he ran into some one. But if you don't give him enough time to process the situation he automatically becomes defiant and shuts down.
The teacher had also implemented a behavior system that did a number on my son. He would start out each day with 5 beans and for every bad choice he made a bean would be taken away. Infractions included not following directions, not complying with the teacher, talking out of turn. The worst part of the system was that if she didn't have time to remove a bean at the time of an infraction she would do it later that day and take multiple ones at a time. This was truly confusing to my son and caused many melt downs. The teacher also told me that he should have consequences at home for his actions at school. She told me that if you don't nip this in the bud now what will happen when he grows up. So at home we proceeded to try time outs, take electronics time away, and ground him from friends. None of that worked and only made the situation worse
Needless to say the constant blame, comments, and punishments had taken a toll on my son and by the middle of school he was suffering from anxiety attacks, leg pain, and constant stomach pains. He was refusing to go to school in the mornings when we woke him up. He was extremely defiant or he would just shut down and not talk. This is when we requested the School Psychologist get involved. She observed our son and had us do a Short Sensory Profile on him. After observing him she thought that he might have Auditory Processing Disorder because he didn't start on his school work until the teacher would come over and repeat the instructions. She also noted low muscle tone because he constantly was laying his head on his desk to do homework. We had him tested for Auditory Processing Disorder and he passed. In fact he had better than average hearing but he did have problems with background noise. The school also had an OT observe him in the classroom towards the end of the year. Of all the people that had helped with my son she understood him the best. She noted low muscle tone, posture issues, likes to stand at desk, difficulty with fine motor control, lack of eye contact looks like he wasn't attending to what the teacher said even though he was. Her suggestions were to give him a sit fit to get proprioceptive input, allow him to stand at his desk, positive behavior plan, a slant board to help with writing, and to allow movement breaks. I also spoke with the School Psych and asked her about Aspergers. Earlier that year she had initially told me that she didn't think autism would be an issues since he had to good of social skills. She gave us and the teacher the GADS test and he scored high/probable for Aspergers.
Our Quest for an Answer
Although the school had done some testing I still didn't have a definitive answer. The school psychologist told me that our son's academics weren't suffering enough for them to do a full evaluation on so I started looking elsewhere. We sought help from the Star Center in Denver Colorado. I knew without a doubt a majority of my sons issues stemmed from sensory issues so I thought the Star Center would be a good place to start. The Star Center was awesome, although a little expensive since my insurance would not pay for our visit. We spent a week with an OT who initially tested my son using the SIPT and then worked with him on their findings. What they found was that my son had low muscle tone, posture difficulties, major issues with motor planning which they told me was Dyspraxia, and sensory dysfunction in the following areas: Proprioception, Vestibular, and some Visual and Auditory dysfunction. Before I took him to the Star Center I had an inkling that he had proprioceptive and vestibular sensory problems but I hadn't quite grasped the Dyspraxia part. This was a huge turning point in our life and the more I learned about Dyspraxia the more it fit my son to the Tee. I did ask the Star Center if they thought he might have some Co-Morbids and they said they didn't think he had Aspergers but he may have a touch of ADD but his sensory problems were so significant it would be hard to tell until the got the sensory problems under control.
Armed with this knowledge we approached his 1st grade year. We decided to send him back to the private school because he desperately missed it and his friends and if he stayed at the public school he would have had the same mean teacher for 1st grade. We had our initial meeting with the school and a school psychologist that was part of our public school's special education cooperative. I explained the Star Centers findings and gave them a run down of my son's issues and the Star Centers suggestions. One of the suggestions was mandatory movement breaks which they said they would try to work in. Another suggestion was OT for our son's fine motor and visual motor issues. Also some training in Social Skills to help with behavior and self regulation. The school agreed to movement breaks but OT and social skills would have to wait until they collected more data on the issues my son was facing in the classroom. Luckily my son's first grade teacher is very compassionate and caring. Things started out well but as the year progressed the teacher started to question if my son's behaviors were on purpose or sensory related. He was having problems in the classroom with personal space, talking to himself or making noises during work time, not being able to stay in his seat, and problems with loud unstructured classes and areas. He was also having great difficulty with social situations and social cues. In these social situations he tended to be very impulsive, reactive, and defiant. In light of the teacher uncertainty of how to proceed with our son they brought a few people in to observe him. The psychologists came to the conclusion that although some things were sensory related, other behaviors were on purpose, impulsive or defiant and suggested that he may have ADD and on the way to ODD (Oppositional Defiant Disorder). They wanted me to have him tested for ADD and see if medication would help with the impassivity. During this time my son started to have anxiety problems again. He said that they were telling him he was doing things on propose and he was making bad choices. Our son told me that "He didn't do things on purpose, at least not most of the time. He said that when he was in those situations it felt like his head was overheating and he has a hard time thinking." He tried to explain things to them but they wouldn't listen or believe him and said that wasn't the case he was just doing stuff on purpose. Again he was being punished at school and at home and was having a hard time with it.
We had a meeting with the school in October and I agreed to have him tested but I would like the school to work on some things. I told them my biggest concern was how the school and our family was discipling my son. I told them that our son did better with positive reinforcement than negative consequences and I asked that he be put on a positive behavior plan. They agreed and set up a plan that broke the day down into 5 sections. If he behaved the entire section he got a smiley face and received 20 minutes of Minecraft time at home in the evening. If he misbehaved he was given one chance to stop and correct his behavior. If he did not comply he would be given a chance to cool down in the office and talk with the principal for 7 minutes. I also noticed that he often got in trouble in PE and Music. Being loud unstructured classes I asked that he be allowed to not attend those classes and sit and work quietly in the classroom until the kids came back. They agreed and this actually gave our son's teacher a better chance to get to know him without all the added distractions. The teacher did note that if she was alone with our son in a quite room he was a completely different kid. He would quietly work on projects and have very complex conversations with her but when the other children would come in the room it was like a switch flipped and his behaviors would start up again. She also noted the he was one of her best behaving students during church. The schools recommended that he not go to after school care because of it being loud and unstructured and I agreed. I did ask for OT and an evaluation for an IEP but was denied at that time because it wouldn't give us an accurate reading because he was so oppositional and he was not failing in his academics. Although they weren't willing to do the evaluation with all these things in place things got dramatically better. Our son wasn't being punished anymore but was actually being rewarded by earning time for the good things he did.
I went to set up an ADD appointment with my son's pediatrician but instead I decided to have a Neuro-Psychological evaluation done because I thought my sons situation was more complex than what a 30 minute ADD appointment would present. The psychologist that did the testing was very through. She gave us our son's teacher rating scales to complete. She also conducted a 2 hour interview with my husband and I to really get a good understanding of the situation. She than conducted 2 days of 2 hour testing with our son. The following were her findings. She conducted a WISC-IV and he scored 104 for the Verbal Comprehension index, 106 for Perceptual Reasoning Index, and 99 for Working Memory Index which put him in a solid average range. However, he scored 83 on the Processing Speed Index which put him in the 13th percentile for processing speed. Hence the issues with handwriting and issues with responding quickly to questions. On the WAIT-II test he tested above average for Math, and average on everything else. She did note some difficulty with Reading and Spelling if more than a few words were on a page. He was also given some of the NEPSY and she noted motor planning, especially visual motor planning were in the critical range which would be why he was having problems with writing. She did say that he tested well on most things that would cause problems for ADD kids. The BRIEF(Executive Functioning) reports were all elevated. The most significant ones were transitions/shifting and self monitoring. Also noted on the Connors were psychosomatic symptoms at home and oppositional behavior. The GADS was given again and the findings were High/Probable for Aspergers - 1st grade teacher showed similar results to his kindergarten teacher. The test showed delays in social/emotional understanding and problems recognizing social cues. Basically stating that Our son is aware of his social environment but not interpreting it correctly. This test also showed rigid thinking patterns and problems with transitions. In the end the psychologist agreed with the Dyspraxia diagnosis but she still thought a more appropriate diagnosis would be Aspergers. She said he is on the very mild end but without the diagnosis he may not receive the help he needs in school. She also said she doesn't give the label lightly but it seems to greatly be affecting his everyday functioning. She also said after spending time with our son she didn't feel that he had ADHD/ADD. She attributed his behaviors to Aspergers and frustration with Dyspraxia and Sensory Processing Disorder.
We took the evaluation results and had a meeting with the school. It didn't go as I had hoped. I had given the teacher, principal, and school psych a copy of the report to read before hand. When we arrived at the meeting an OT, Special Ed teacher, School Psych, Principal and teacher were there. The OT had worked with our son a couple of times and gave us a report on the meetings. In the end she still attributed a lot of his difficulties to behavior and defiance. The School Psych was still adamant that he it was still a case of ADD even though she had read the psychologist recommendation. The fact that the psychologist had referenced our son's difficulties with visual motor planning multiple time throughout the report went over the school psych's head when she suggested the he be given a written task to measure his attention and focus. Throughout the whole meeting autism was only mentioned once and basically pushed to the side. I asked if the district autism specialist could step in and help with his case. I was told that the school psych and special ed teacher were both part of the district and they were handling things. I had also submitted an official request that he be evaluated for an IEP due to the findings of the Neuro-psych eval. The school psychologist told me that academically he is doing to good to receive an IEP. He wouldn't need special services most of the his needs could be taken care of in the classroom and using general education intervention process. In the end the most we could agree on is that he needed to start Social Skills classes, they would look into helping him with reading (Title I) and the OT would work with him for a few weeks. They said her intervention and observation time with him will be very helpful in discerning what are skill vs. performance deficits.
The OT continued to work with my son however he did not like her. He said she was mean. She wasn't like most OT's I had meet in the past. The other OT's knew right off the bat the difficulties our son had and were very understanding and fun to work with. Although this new OT was very calm and seemed to know what accommodations to put in place, she viewed my son as a behavior problem and felt he was taking up her time when she could be helping more needy children. I spoke with her one day about our son. She said the were working on some exercises and if he completed them he would be allowed to play with a special toy. On that particular day he didn't earn the special toy and she said when they were finished for the day she went to give him a high five to get some proprioceptive movement in and he refused. She mentioned multiple time that he wouldn't make eye contact with her and that was a sign of defiance. She said he cooperates only when he wants to cooperate. ARGH how do people not understand that he has social issues - lack of eye contact is very common especially in uncomfortable social situations. Anyway, I asked my son what happened. He said she asked him to give her a hi five so hard that it would push her over and he thought that was mean. I asked him how do you think it's mean if she asked you to do it. He said the rule is you don't push people it's mean. Inflexible rule following rears it's ugly head again. It's just sad that people presume to know what my child is thinking without asking him or giving him enough processing time to answer. The sad thing is because my son is smart and has a big vocabulary people can't fathom the fact that he has a processing issue and his lack of immediate response comes off as defiance. The school only allowed her to work with him for 4 weeks. Although I'm not very happy he isn't receiving OT I'm glad he doesn't have to work with her anymore.
After getting that neuro-psych eval I realize now how much our son's processing deficit comes into play. Most people don't notice because he has come up with some coping behaviors to cover it. I know he suffers a great deal of embarrassment when he is not able to answer someone right away and he either plays it off as defiance, complete shut down, or becomes silly. All of these coping mechanisms make him look bad in other peoples eyes. We have started a new program with our son call Collaborative Problem Solving (CPS) by Dr. Ross Greene author of the Explosive Child. This has made a world of difference and helped me understand my son better. Most people that know my son usually focus on his behaviors and not what is actually causing the behavior - CPS helps me figure that out. It isn't necessarily easy but it was worth it for us. Let me give you an example of digging deeper with CPS. In the past I had tried to use CPS but whenever I would try to talk to my son he would say he didn't know or he would shut down and not want to talk. I picked the CPS method back up a few weeks ago and tried to figure out why my son wouldn't talk to me. At a calm time I asked him why he has a hard time talking with me and after some digging he said he just doesn't know what to say(processing). I asked if he needed time to think about the questions I asked and he said yes. I asked if I could ask the question and come back later to talk about it. He said that would work. Shortly after that my son got in trouble at school for not starting on his english school work and was sent to the office. I asked him what happened. He said he didn't know what to do. I said didn't the teacher give you directions? He said she handed out the worksheet and told the kids they had done one like it before and that was all she said. I asked what did you do then. He said he just sat there. I asked if he asked for help and he said by the time he thought to ask the para told him it was to late, he was already in trouble and had to go to the office. He said he still had to finish the work in the office. I asked if they had read the directions and he said yeah they did and he was able to finish the work. After I gathered this info from my son I asked the teacher about it. She said our son wasn't the only child that was confused so she could see why he didn't start on it. The sad thing is he has gotten in trouble tons of times for not starting on his work and in the end it all boils down to slow processing speed - not actually being defiant.
The good news is that the school is trying to work with us somewhat by providing pull out for Social Skills and Reading. They are also trying to get his movement breaks in. He has returned to doing PE and is one of the best runners they have but abysmal at team sports. The teacher has taken a continuing education class on Sensory, ADHD and Aspergers children and has a way better understanding of our son. With the exception of a mean para, as my son calls her, things are going well. However, I still dread everyday he spends in school and getting a call or email about something that went wrong.
I
guess the thing I have learned this year is that my
son's defiance only happens when people place blame or don't try to
understand how my son sees a situation and they don't give him time to process
it. I have also learned not to take advice of others when it comes to
disciplining my son or that he is just a boy and nothing is wrong. Things that
work for most kids don't always apply to him. The best way to approach
situations with our son is to be understanding and dig a little deeper.
Who He Is
I know I have spoken of my son's difficulties throughout this story but I did want to let you know of his strengths too. He is a very loving and loyal child. He is amazing at math and can complete a 20 question sheet in 10 seconds. His vocabulary would blow you away. He recently took the Iowa Basic Assessment and scored in the overall 99th percentile for 1st graders across the nation. Although he scored extremely high in vocabulary and math he had some weaknesses in spelling and reading.
In addition to academics, ever since he's been a toddler my son has loved anything involving physics he was constantly making roller coasters and booby traps out of anything and everything. He currently uses Minecraft to test out his machines and contraptions. He is always making very complex machines and is on the lookout for bigger and better tutorials. Minecraft has also introduced him to the concept of electronics which has pushed his machine making over the edge. He constantly creates redstone machines with repeaters, pistons and music blocks. We have also recently purchased an electronics project called Snap Circuits and he learns new circuits, takes the concepts he has learned and uses them to make up his own circuits. He also loves Star Wars, Percy Jackson, Indiana Jones and Kiss.
