My son had a follow-up visit with his opthamologist on Friday.  The outcome - an eye patch.  His vision is still getting worse and since he’s ambylopic we’re afraid that his brain is going to shut off his right eye.  Even with the glasses, he’s still over-compensating and using his left eye more.  Now he gets to wear an eye patch for three hours a day, every day, and we go back to the doc in two months.  I think this will be good for Alexander because he’s been slacking a bit on wearing his glasses (he’ll take them off for something and forget to put them on, etc).  This way he knows that this is serious business but he doesn’t have to worry about wearing the patch outside of the house.

I cannot get him to say “arrr” for me though, I’ll do it in my best pirate voice and he just giggles but refuses to say it.  I asked him if I should buy a parrot for his shoulder to which he enthusiastically responded “yes!”  I forget that rhetorical questions don’t usually work with six year-olds or Aspies.  hehe  The office gave us a package of four sample patches and recommended a company based out of Tucson, Arizona - Ortopad USA.  I ordered the patches yesterday and selected priority UPS next day shipping (as we don’t want to run out).  A representative from the company called me back and said UPS doesn’t deliver on Saturday and since I’m also in Arizona the standard priority mail shipping would likely get here by Monday.  Guess what arrived on my doorstep today?  Yup, 100 fancy boy-themed eyepatches.

As I’ve mentioned (repeatedly, I’m sure) Alexander is tactile defensive.  Thankfully the patches only irritate him a little bit.  Hopefully when we go back in two months his right eye will have made improvements and we can stop.  Until then, I have a happy little Aspergic pirate. 

Perhaps I should use the word meltdown instead of tantrum - however you say it, it is still the same thing.  Wednesday was my son’s first day of school and thankfully he had a good day at school.  Unfortunately that didn’t transfer over to his swim lessons that started about 45 minutes after school let out.  I had water and a favorite snack available for him in the car hoping that would help.  We got to swim lessons and he changed pretty readily and with a smile on his face got into the pool.  He’s usually a bit head-strong while in swim lessons so when he started out like this I didn’t think anything of it.  The class is just my two children and the instructor so it’s OK if he’s a bit spirited as no one else is missing out besides his little sis.

Well about halfway through the class things took a downward turn.  He was upset and didn’t want to do a dive.  He finally did a dive and then when the instructor helped him roll over to a back float (called the airplane) Alexander got mad.  Not sure why but he flipped, he started screaming, flailing, etc and tried to slap the teacher in the head.  She got him calmed down and he did his back float then came back to the stairs to wait while Ava had her turn.  When it came back to Alex he refused to get out of the pool and walk to do more dives.  When he finally got out of the pool he started kicking the toys into the pool.  At this point I stepped in and told Alex that he was done with swim lessons for the day.  We were walking to the door so I could dress him and he ‘escaped’ and ran back and got into the pool.  The instructor lifted him out for me (she’s great by the way) and I wrapped him in the towel and told him he could stand with me for the remainder of the class.  When it was over and Ava got out Alex grabbed a noodle and tried to hit the instructor.  Yikes! 

I know he was in sensory overload.  I know he was tired.  I know he had a long day.  I know it took all of his energy to get through school but I was still embarassed.  There was another mom in the room (at the other end of the large pool) who just kept staring my way.  I didn’t have it in me to say anything, I just led the kids out and got them to the dressing room.  Another battle ensued - Alexander refused to get dressed.  He wanted to wear his wet swim trunks.  I told him no because I knew the second he sat down in the car in them he’d freak out and want them off.  He hates staying in a wet swimsuit.  I ended up doing the majority of his undressing/dressing and a mom in the dressing room said “You’ve got a headstrong one there.”  I just smiled. 

Tonight should be interesting as Alex has occupational therapy at 3:30 (school is out at 2:45).  Occupational therapy is always a bit of a challenge for him - going there after a long day (and week) at school is going to be exciting to say the least.  Fingers crossed it goes well!

Yesterday I mentioned to Alexander’s play therapist that the psychiatrist has diagnosed Alexander with Asperger’s Syndrome contrary to the psychologist’s findings.  The first thing the therapist said was “I agree.”  She is a licensed clinical social worker so unable to make a diagnosis but she works with many HFA (high-functioning autism) and AS (Asperger’s Syndrome) kiddos so is familiar with how they present, clinically.  She said she was surprised that the psychologist said that it was just anxiety and feels that the psychiatrist’s diagnosis is correct.  I told her that the psychiatrist looked at all of Alexander’s quirks and that it ended up being like “a neat little package called Asperger’s Syndrome.” 

In reading over the past week I have learned how Alexander has many classic AS traits that aren’t addressed in the DSM-IV.  In the OASIS Guide To Asperger’s Syndrome they have a section called Suggested Solutions for Common AS-Related School Problems and some little things stood out.  One section discussed the child having difficulty maintaining a comfortable posture at his desk and different ways to address it.  During my son’s occupational therapy evaluation it was determined that he has problems with postural praxis as well as low muscle tone in his upper body leading to problems with fidgeting to get comfortable while sitting at a desk.  This isn’t a part of the DSM-IV criteria for Asperger’s Syndrome but evidently it is something common among many children with Asperger’s Syndrome.

Other issues that aren’t classified as diagnostic criteria but when looked at as part of a whole child view could be part of Asperger’s Syndrome are handwriting issues including dysgraphia.  At 5 it is hard to determine whether or not Alexander has dysgraphia but he certainly has some of the symptoms - as he gets older and his ability to write his thoughts improves we’ll know better whether dysgraphia is an issue.  At school he is learning above grade level in all academic categories except for handwriting - he is considered ‘at grade level’ for handwriting but we have been told we really need to work on his fine motor skills and his writing techniques. 

Sensory processing disorder is common for all children on the spectrum, not just those with autism.  My son is no exception in this case.  Many times children with AS present with sensory defensiveness - they are over-sensitive to certain types of sensory input including sound, touch, taste, smell, and sight.  My son is sensitive to all but smell.  The bright sunlight hurts his eyes; he is not a touch-feely kid and will wipe off kisses or other light touches as he can feel the sensation of the touch linger; he has a very sensitive sense of taste and thus has problems with food; he does not like loud sounds - especially sudden loud sounds.  It is not unusual for a sudden loud sound to make him mad - where it scares my daughter it just makes my son mad. 

Another part of Alexander that helps create the neat little package is his coordination/motor-planning issues; sometimes called dyspraxia or developmental coordination disorder.  During Alexander’s occupational therapy evaluation the therapist noticed motor-planning issues on his part and is working on them with him through therapy.  He has speech articulation issues that will probably be addressed through the school district next year - this could be problems with his oral motor-planning - getting his mouth to form the correct shape to make the proper sounds. 

I could go on and on about Alexander’s quirks that fit into the profile of a child with Asperger’s Syndrome but I won’t.  I’m definitely not focusing on the negative - these little things make Alexander who he is - my son, my oldest, and my sunshine.  I just thought that the neat little package comment really summed it up - all of these varying issues come together to form one neat little package and that package is called Asperger’s Syndrome.

Yesterday was a very busy day in the mindless mommy household.  Not only did the kids have school but Ava was meeting with her new occupational therapist (the one contracted through the state) and Alexander was scheduled to meet with his play therapist.  I’m going to start with the play therapist appointment; it went well.  The whole family met with her and she is really a very kind soul and it felt like she was genuinely interested in the problems Alexander is dealing with.  He was having one of his better days, he even had a twinkle in his eyes.  Everytime the therapist looked at Alexander he’d duck inside a little play tent she had in her office.  However he was able to answer some basic questions without shutting down.  We all talked for a solid hour before dismissing for the day.  The next two appointments will just be Alexander with Miss Natasha and then after that the entire family will reconvene for a session.  She’s going to start with helping Alexander get the words he needs to describe his feelings and then from there work with us on little ways to disrupt his routine, in a non hostile fashion, to help him break out of his strict structure.  We discussed a social skills group but near the end of our session she doesn’t think he’s ready for one yet since most of his pretend play is still so directed.  I had mentioned that often-times I pretend ‘wrong’, for lack of a better word.  He has a script in his head and if I don’t pretend the way he has it scripted out he’ll correct me.  She said he needs to be able to roll with the punches and accept something out of his script readily before he’ll be ready for a social skills group.  I hadn’t realized that it was such a problem but I’m glad we’re getting it addressed.

Alexander has a weird way of expressing himself at times and the counselor said she couldn’t definitely see why we were thinking Asperger Syndrome.  On Monday as we were heading to his occupational therapist he said “my nerves are chasing the car.”  I asked him if they were going to catch the car and he said no so I suggested he tell his nerves to go home and his response was “my nerves want to come in and watch me during therapy.”  That is just an interesting way for a 5 year-old to express his anxious feelings.   We are hoping that he is receptive to the play therapy and is able to grow from it.  If the only thing we achieve from it is that he isn’t as awkward socially then I will feel like it is a success.

In Ava news she met her new occupational therapist, Miss Nancy.  In typical Ava fashion she took right to her.  Ava will go off with anyone without a second thought.  It is really kind of scary to me - she has no stranger anxiety.  She participated fully in her 50 minute session and the therapist was impressed with her skills.  My guess is when this six months of OT is over she’ll graduate from occupational therapy.  That will be a total of nearly 10 months; I just hope they can resolve the sensory issues not just the motor and praxis issues.

Ava woke up with a small cough yesterday morning.  It was a weird one but I didn’t think much of it, it has been quite windy here and the wind has kicked up a lot of dust and pollen.  As the day progressed her cough got worse and at play therapy the therapist suggested it may be croup.  Ah hah!  That’s what it reminded me of, a croupy cough.  On the way home from play therapy we stopped off at the pediatric urgent care (our doctor’s office couldn’t get us in as it was 30 minutes before close); thankfully there was zero wait so we were able to get in and out with relative quickness.  It is, indeed, croup.  She was given a single dose of a long-acting steroid and we were sent on our way.  I’m glad we went when we did because as the night went on the fever snuck up on us and the cough continued to get more frequent.  Thankfully it sounded better but had we not received the steroid we most definitely would have been out in the middle of the night having her looked at.

The downside to the steroid is that it makes her just mean.  About 45 minutes after she went to sleep she woke up and was just crying and making weird sounds.  She was looking off at the corner in my room and was non-responsive for about five minutes.  I kept saying “Ava, look at me.  Ava, look at me”  She was in her own little world and I’m not sure that she was completely awake.  Finally her eyes turned towards me and I realized she was in there.  Then the crying took on a new tone and a tantrum ensued.  She was throwing pillows, hitting the bed, kicking me, etc.  I called my husband who was still at work to see if he could talk her down; no - she grabbed the phone and tried to throw it.  She then hit the phone several times screaming “no talk daddy”.  After about 15 minutes she calmed down enough to lie down next to me and I rubbed her forehead until she fell asleep.  She woke up about every 45-60 minutes last night crying and flailing about.  She coughed in her sleep the entire night as well.  It was just a rough night for the both of us.  My husband took my son to school today so we could stay in bed until 8am and get that extra 1.5 hours of rest.  I imagine she’ll take a good nap today - fingers crossed!

Dictionary.com defines comorbid as:

pertaining to two diseases which occur together, such as ADHD and depression

and also as:

existing simultaneously with and usually independently of another medical condition

ADHD isn’t always seen alone, very often there are comorbid conditions present - from sensory processing disorder to autism spectrum disorders to anxiety. In my son’s case he presents with ADHD (primarily hyperactive/impulsive type), sensory processing disorder, and childhood anxiety. According to an article “ADHD with Comorbid Anxiety” by David Beck Schatz and Anthony L. Rostain “ADHD is often comorbid with anxiety disorders, with rates approaching 25% in many samples.” That means that as many as 1 in 4 people afflicted with ADHD also suffer from anxiety, that’s quite a high rate.

Now let’s pursue other conditions which are often found alongside ADHD. In my reading I saw mention that somewhere between 50% and 90% of people diagnosed with ADHD will be treated for a second condition at one point in their life. The more commonly diagnosed comorbid disorders are depression, bipolar disorder, anxiety, learning disabilities, and oppositional defiant disorder. This makes me wonder what it is in these individual’s brain wiring or genetics that leaves them open to additional diagnoses above and beyond the initial diagnosis of ADHD. This also makes me wonder if my son has a more arduous road ahead of him then I initially thought.

Last night my parents watched the kiddos so my husband and I could have some quality time together. We went out together and were only gone about three hours but it was refreshing to have some time for just us. I recently heard a statistic that was quite frightening - something like 80% of couples of children with special needs end up divorced. When I married my husband I married him for life. We talked about this last night at dinner and can definitely see why; have children with non-typical needs is very stressful. My husband works approximately 70 hours a week plus he comes home and helps with the nighttime parenting. I am a stay-at-home-mom so can’t really count how many hours I work because I’m on-call basically 24×7.

I’ve been feeling really frazzled lately so last night was a nice getaway. I don’t know what is going on with my 5.5 year old but his behaviors are just getting worse. He is the most stubborn person I know. He’s beyond strong-willed, he’s beyond difficult, he’s beyond high-spirited - he is just Alex. Alex…is…a…handful. I love the kid dearly but I really want to figure out what’s going on in that little head of his so we can address some of these issues. Thankfully right now his ultra-stubborn and defiant streak hasn’t crossed over to the classroom but I know it is only inevitable - given enough time his at-home and out-and-about behavior is going to make its way to the classroom.

My daughter is also picking up on the defiance and stubbornness and has become a handful. She doesn’t have the ability to understand language well enough for me to sit down and talk to her about her new found behaviors so we just kind of have to roll with the punches. Her receptive language (the ability to take in language and understand it) it probably about 1.5 years delayed. For her we still do a lot of redirection, just like we’ve been doing since she learned to walk at 10 months of age.

All of the programs that have been on lately to celebrate National Autism Awareness Month have actually saddened me a bit. My daughter was diagnosed in November of 2006 and I went through the typical grieving stage. Then I bounced out and thought to myself “Hey, maybe my daughter is just a child with sensory processing disorder and language delays and she’ll lose the autism diagnosis one day.” Well reality has really set in this past week, it is quite clear that she is definitely autistic. She is not severely affected, and for that I am very thankful, but she is most definitely affected. I have been the rock for my family, being strong when they were all coming to terms with her diagnosis and now my little rock has crumbled. Thankfully all of my family is there for me and very positive about my daughter and her progress. Now its their turn to be my rock.

If you’ve made it to the end of this post I thank you. This is one of my “mutterings” type of posts - a brain dump so-to-speak. I speak what’s on my mind and get it out there, it makes me feel better in the end.

This is a topic that is near and dear to my heart. For my daughter’s second birthday I bought her a bunch of really cool panties in characters I thought she’d love. She’s a girl, girls were easy to potty train I was told. One day we decided to go for it and put her in panties. At first she peed while sitting in her highchair eating breakfast and didn’t seem discomforted by it. So we put on a fresh pair of panties and a little bit later she was walking across the house with pee running down her leg and seemed absolutely oblivious to it all. I told myself “OK, she’s not ready, we’ll try again later.” Subsequent attempts ended in the same thing - a completely oblivious two-year old. My son wasn’t potty trained until 34 months of age so I’m definitely not one of those “rush to train” types. I figured I’d take her lead.

Flash forward 10 months or so and we realize that there is more to this potty training thing than we originally thought. Not only is my daughter developmentally delayed she also has sensory processing disorder and is of the sensory seeking type. The reason why she was oblivious to the messes she made was because she probably couldn’t feel them. If you can’t feel the sensation that you have to go then how can I expect you to make it to the toilet? If you can’t verbally, or non-verbally, express that you need to go then how can I expect you to make it to the toilet? The answer to both of these questions is I can’t. I have since taken a much more laid back approach to potty-training (or potty learning as I called it with my son). My daughter is on her own schedule, as she is with everything in her development, and when I see the signs in her we will go for it. Right now I’m thinking she’ll be day trained by about 4.5 - 5 years of age just based on where she is now.

There are a lot of resources on the web and in books with methods to potty training children with autism and other special needs but some of them just seem like an absolute chore for both the parent and the child. Check out these Potty Training Guidelines; in step six you are to keep the child on the potty until they are successful and that it could take 1-2 hours. I could certainly think of more productive things to do to help my child than sit on a potty for 1-2 hours. I’m not totally knocking the method because I’m sure its worked for many people, its just not the way I’d like to go about things. Talk to me when my daughter is 5 and not day-trained yet and I might be singing a different tune, but as it stands now this just seems like too much.

There is a book out there written entirely on this topic: Toilet Training for Individuals with Autism and Related Disorders . I haven’t read this book yet because my daughter is not ready for potty training - her bowel movements aren’t regular - heck she doesn’t even notice that she has them half of the time. She has no desire to sit on the potty. For now we’ll take our free diapers from the state and use them until she gets to a stage, developmentally, that she is aware of the pottying, can communicate the needs via words or her picture board, and is motivated to learn.

One of these days we’ll wake up and know its the day to start potty learning with my daughter. What I’ll have to remember to do is have some panties around that actually fit her, the little 2Ts that filled a beautifully decorated gift bag on her second birthday just aren’t going to cut it.

Today was…well…long. Long isn’t a negative word, right? Therapy was quite challenging for my son yet again. He refused to do anything at the beginning. The therapist usually starts off with “astronaut training” which is a vestibular protocol that he usually enjoys. He did not want to do it however he ended up making a deal with the therapist. If he could climb the rock wall first then he’d start his therapy session; they shook on it and up the wall he went. He quickly climbed (he has a path memorized) and when he got to the top the therapist said “look, you did it just like a real one” and he said “No, I don’t have a rope.” So she says “I’m your rope.” He looked at her and said “you’re not a rope.” Well, true. LOL The kid is so literal sometime that I can’t help myself but to giggle.

He stayed on-task relatively well until the end of the therapy session neared and it was time to do an infinity walk. Basically you walk in a figure eight while reading letters and numbers off of a printout. This led to a meltdown last week but thankfully only defiance this week. He absolutely refused to do it and I can’t figure out why. We ended therapy without an infinity walk. My husband stayed on while my daughter had her session while I took my son to see the psychologist.

We went to the psychologist’s office and the doctor came out to call us in and my son sat on the couch and didn’t move nor would he look at her. I told him it was our turn and he said “I don’t see anyone.” Nice. I finally coaxed him in and we asked him if he’d like to go color in another room or play with the toys in her room, he chose to sit on the couch and stare out the window nearly oblivious to us. Partway through the meeting he asked if he could go into the other room to color because he wanted to be ‘alone’. So we set him up (with supervision) to color and the continued to talk. About ten minutes later we hear a knock at the door and its Alex with a page full of drawings. Guess what he drew - Star Wars characters…surprise surprise! The boy loves his Star Wars.

By then he was getting impatient so she gave me a bunch of paperwork and setup our follow-up appointments. His IQ testing will be next week. My homework includes the Asperger Syndrome Diagnostic Scale (ASDS), the Vineland-II, and the Behavior Assessment System for Children (BASC-2). Being the anal person that I can be I’ve already completed them all. Now I just get to wait for our next appointment which won’t be until mid-week next week.

Happy Monday!

This week is Spring Break for my kiddos and my husband took the week off so I actually got to sleep in this morning! Evidently my son and I were the only two to sleep as my daughter had a rough night and daddy took care of it so I could sleep; he’s napping now.

Monday is therapy day around our house. We go hang out with the occupational therapist (to address the sensory processing issues, motor planning issues, gross and fine motor delays, etc) for two hours as my daughter has therapy first and then my son follows up. Since they have pretty opposite needs, and are a two years in age apart, there is no combined therapy for us. My daughter absolutely loves therapy, her eyes light up and she has so much fun. She loves experiencing all the sounds, things to touch, etc. My son, on the other hand, isn’t as enthusiastic.

The therapist is really challenging my son and he’s showing her his little stubborn streak. He has some pretty concrete tactile defensive issues and spent ten minutes completely refusing to touch the shaving cream on the mirror. When he accidentally got shaving cream on his hand he quickly wiped it off on his jeans. Today should be interesting as last week was a very difficult time for him as he refused to participate in a few different activities. Hopefully he’s more open to it this week.

After therapy we will be meeting with the psychologist that diagnosed my daughter; but this time the topic of conversation is my son. He’ll be assessed for Asperger’s syndrome as well as have an IQ test administered. Thankfully my husband will be able to take my daughter home so it will just be my son and I at the psychologist’s office. It will be interesting to see if he interacts with her. Our last appointment, with a nutritionist to address his weight loss, didn’t go so well. He sat in the chair, facing the back of his chair, with his face on the chair and refused to talk to her. He’d talk to me and I’d have to relay it. Some people may think that he was being rude but he’s just a shy kid and this was too much for him. The psychologist’s office is much more kid-friendly so he might immediately feel at ease. Guess we’ll find out this afternoon!

Sensory Processing Disorder, as it is now being called, was once known as both Sensory Integration Dysfunction (SID) and prior to that Dysfunction of Sensory Integration (DSI). Sensory Processing Disorder is a grey area right now especially with insurance companies as there is no diagnostic code or criteria listed in the DSM. There is a big push right now, being spearheaded by Lucy Jane Miller, to have Sensory Processing Disorder included in the next release of the DSM - the DSM V. If you would like to help please check out the Advocacy link at the KID Foundation.

Now on to the Sensory Processing Disorder resources.

Books

• Sensational Kids by Lucy Jane Miller
• The Out-of-Sync Child by Carol Stock Kranowitz
• The Out-of-Sync Child Has Fun by Carol Stock Kranowitz
• Raising A Sensory-Smart Child by Lindsey Biel

Websites

• The KID Foundation’s SPD Network
• Sensory Processing Disorder
• Sensory Smarts

If you think your child may be affected by sensory processing disorder you will most likely want to locate an occupational therapist who specializes in sensory issues for an evaluation. Both of my children were evaluated by a wonderful occupational therapist and are both currently in therapy for their opposite sensory issues. My daughter has been in therapy approximately ten weeks at this point and has made marked improvements; we are very happy with the results. My son has only been in therapy a few weeks and we are noticing changes with him - he is a bit more stubborn and resistant to trying some of the new things during therapy so progress is a bit slower but we’ll continue to go at his pace.