When an individual has Asperger’s Syndrome and is also gifted, s/he falls into the category of twice exceptional(2E).  The same would be of a child with ADHD and Giftedness or a whole bevy of other conditions.  A child could even have a reading learning disability but be gifted in math and thus, twice exceptional.  Twice exceptional students present an interesting challenge to teachers - whether the child is homeschooled or in a traditional classroom.  One benefit of homeschooling a 2E child is that the parent can tailor the education specifically for the child.

My son is twice exceptional having officially been declared gifted in the verbal arena and nearly gifted in mathematics (95th percentile).  However, his anxiety crept up when the school did a giftedness assessment on him at the end of Kindergarten (per the teacher’s recommendation).  He actually scored in the at-risk range verbally (20th percentile).  When he had one-on-one testing with the neuropsychologist he scored in the 98th percentile. 

So now it is the end of 1st grade, a few weeks ago Alexander’s teacher informed me that she would like to recommend Alexander for the ALP (Advanced Learning Program - also called GATE) testing.  She said he has strengths that are commonly seen among the gifted and knows of his scoring with the neuropsych.  I talked to Alex about it and he said sure, that one of his closest friends was going to do them this year and he wanted to as well.  So I signed off on it and testing started yesterday and will continue through tomorrow.

The school uses the CogAT (Cognivite Abilities Test) which is administered to a group of children.  Alexander told me yesterday that there were 3 plus 3 plus 3 plus 1 students in the room, all first graders.  He said his ears were working well, his nerves stayed behind and it was fun.  I don’t care what the results are, I’m just glad that it isn’t an anxiety-riddled event for him.  Group-given tests like this aren’t really a strongpoint of a child with attention and auditory issues but hey, ya never know, right?

Dental work, Asperger’s syndrome, and anxiety - those three phrases do not go together!  They are, however, my reality.  Well actually, they are my son’s reality.  He was complaining of a toothache on Friday night and yesterday I managed to get him in with a fabulous pediatric dentist who has experience with children on the spectrum.  The dentist’s niece has Asperger’s Syndrome so he “gets it.”  Alexander did great yesterday - he let the tech take x-rays which involved foreign objects in his mouth.  He also did a great job during the cleaning only gagging a couple of times; he probably only swallowed half of the fluoride this time!  It has been a year since his last cleaning (I know, bad mommy) but the sensory integration therapy and Wilbarger brushing protocol helped tremendously.

So the bad news is that he has a between the teeth infected cavity!  The dentist said no more raisins, gummy worms, fruit roll-ups, etc.  I let the dentist know that Alexander doesn’t like raisins and can’t have the other foods as he’s on the Feingold Diet which eliminates artificial flavors and colors of which gummy candy has.  I then went on to explain that Alexander doesn’t like anything chewy as he has low oral-motor tone and chewing is a chore.  I wish he’d eat raisins, it would help build his muscle strength in his jaw!  The dentist asked about juice - nope, not much in the way of juice either (maybe a few days a month).  So here’s my conundrum of a child with an interesting cavity.

So we’ll go back in two weeks and they will sedate him with Versed, then give him laughing gas, and follow-up with local anesthetic.  They did let me now they’ll wrap him in a Velcro blanket.  My son is tactile defensive and claustrophobic.  Dear God help us on March 11!  I explained it all to my son and practiced rolling him up in a blanket.  Thankfully he’s a smart guy so understood everything I said.  I think we’ll be fine before and during the procedure but afterwards is where I’m concerned.

Alexander is to skip his clonidine the night before and the day of the procedure he will not be able to take his Focalin XR nor his Risperdal.  Alexander is combative under stress and I’ve been told that Versed can make even the most docile child combative as they come out of it.  Woohooo, yay me!  Alexander is a scrawny little guy (a whopping 41 pounds now) but when he’s in the throes of an outburst someone always gets hurt.  My mom is going to try to come with me to the appointment so she can help me afterwards.  I’m going to stay positive and think that Alexander wil just be giddy and loopy coming out of it - I don’t want my butt kicked my a six year old!

If you’ve had experience with Versed - please, please share them with me.  I’ll take the good, the bad, and the ugly.

Today was our family meeting with the play therapist - the four of us get together and talk about the last few weeks and then make a plan to go forward.  Alexander pretty much hid in the tent in the corner and played by himself.  The therapist reiterated the fact that she feels very strongly that it is Asperger’s Syndrome we are dealing with and not anxiety.  She said yes she has anxiety but she doesn’t see the generalized anxiety or specific phobias that she sees in children who don’t have AS but have anxiety.  She said so much of what she sees with Alexander is classic among children with AS and is happy that we pursued it past the original diagnosis. 

She discussed how she has been implementing play therapy with him and has said that from here on out she is not going to be addressing his anxiety because the type of anxieties he has aren’t benefited through play therapy - they are part of the bigger picture of AS.  She said she will be working with him on his rigidity as well as social communication.  She said she can only do so much social modeling one on one so agreed that the social skills group will be very beneficial for him.  She described some of their play sessions and that they take turns and she can just see Alexander completely tense up when she tries to move one of the figurines (they play with figurines in sand and tell stories).  She says he often-times has difficulty with the story-telling part and spends more time putting the figures in the precise way.  When it is her turn and she moves one it aggravates him.  He also let her know that he is afraid of shadows and black spaces as well as noises.  I knew about the noises but I didn’t know about the shadows - knowing will help me work through these fears.

One good thing is that he is receptive to sitting down one-on-one with her unlike our group sessions.  She figured that there is just too much stimulation when we are all in the room so that is why he sits in the tent.  She recommended we get a tent for the house (we had one but it didn’t last that long) and to let Ava know that when he is in the tent it is his alone time (instead of him having to go into his room).  So we will continue with play therapy but she is really going to challenge his rigidity.  We have been trying and he is absolutely against it.  While pretending today I didn’t follow the script in his head and I tried to keep adding my own input and he was not having it - he quit playing with me.  Hopefully in time he will be more receptive to cooperative and reciprocal play.  I’ve figured out why he plays so well with Ava - she does whatever he says or does.  He has a perfect play partner in her. 

My son had a follow-up appointment with his psychiatrist today and I brought up my concerns about his social issues, anxiety, regimental to routines, obsessions with numbers specifically miles and minutes, etc.  We first saw the psychiatrist almost two years ago when we were concerned that Alexander may have ADHD.  We have since seen her on a regular basis and started medicine to help control the ADHD symptoms in October.  She knows Alexander’s history and knows the family.  She is also the parent of a child with Asperger’s Syndrome.  She said that Alexander does have Asperger’s Syndrome and suggested Tony Attwood’s new book The Complete Guide to Asperger’s Syndrome and said that in addition to the play therapy we really need to get him into a social skills group as soon as possible.

So I’m left wondering, is it just anxiety or is it truly Asperger’s Syndrome.  The psychiatrist seemed to look at the big picture - not just the DSM-IV criteria.  The psychologist adminstered a battery of standardized tests and my son showed deficits in social development and also scored in the very likely range on an Asperger diagnostic scale.  While the psychologist agreed that Alexander met the DSM-IV criteria for Asperger’s Syndrome she felt that anxiety was a more accurate diagnosis.  The psychiatrist feels that the anxiety, the sensory issues, the feeding issues, the motor planning issues, etc are all part of a bigger picture and when looking at those as well as the DSM-IV you get a clear picture of what is going on.

While I was relieved to hear the anxiety diagnosis it just didn’t feel complete.  I wasn’t ready to hear that my oldest child was also on the autism spectrum so I welcomed the anxiety diagnosis.  In the few weeks it’s been since then it just hasn’t felt right.  He definitely has anxiety but it just doesn’t seem to answer for all of his quirks.  My husband and my mom both readily accepted the psychiatrist’s assessment of the situation as that is what they’ve suspected all along.  My mom is a public school teacher and has a student with Asperger’s Syndrome so is somewhat familiar with it.  My husband is just my husband - no experience with it but he said it made sense. 

So right now I have conflicting diagnoses but if I go with my momma’s instinct I think the psychiatrist has a more accurate assessment of the situation.  She has not only known him longer but has parental experience in addition to clinical experience plus she looks at the whole child vs. just the criteria set forth in the DSM-IV.

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!

PDD-NOS stands for Pervasive Developmental Disorder Not Otherwise Specified and is a real grey area for me as someone who is new to the world of autism spectrum disorders.  I don’t read the newspaper in the morning, instead I read blogs.  One of the blogs that I regularly read is Ballastexistenz over on the autistics.org website.  Yesterday morning she published a great post entitled “What PDD-NOS officially means.”  It is an informative post and I wanted to share it with the readers of my blog.

Ava has a diagnosis of autism (also known as autistic disorder) but during one of the meetings with the psychologist who just did Alexander’s testings she told me that she could diagnose Alexander with PDD-NOS. Evidently he fit the criteria for PDD-NOS but she felt that an anxiety diagnosis was more accurate. We are to come back in six months if the issues don’t resolve after we do play therapy and then at that point she may make a PDD-NOS diagnosis. Do I want to hear that? No, not really. However a diagnostic label doesn’t change who my son is. Now that I have a better idea of why a PDD-NOS diagnosis is usually made I am more comfortable with one, should it come to that point.

There are several different types of anxiety disorders, which affect approximately 1 in 10 children, and I wanted to take some time to touch on each of them and then discuss how my son is affected.  The first type is Generalized Anxiety Disorder and the children affected with this type of anxiety are often very self-concious and worrisome needing constant reassurance.  Phobias are another type of anxiety; a person with a phobia have an unrealistic fear of an object, situation, etc.  The next type of anxiety disorder is the Panic Disorder.  People, including children, with panic disorders will have repeated panic attacks and they don’t always have a known cause.

 The last two types of anxiety disorders are Obsessive-Compulsive Disorder and Post-Traumatic Stress Disorder.  Obsessive-Compulsive Disorder (OCD) deals with individuals who are often stuck in meaningless routines, repetitive thoughts, and behaviors.   Post-Traumatic Stress Disorder (PTSD) usually manifests after a child has been faced with a traumatic event. 

 Alexander probably has touches of General Anxiety Disorder, Panic Disorder, and Obsessive-Compulsive Disorder.  When he is in social situations, even some that are comfortable to him, he often times shuts down as if he doesn’t know what to do and how to react.  He’ll slouch his shoulders, turn away from the person talking to him, look at the ground, and sometimes he will answer their attempts at conversation.  When asked how he feels he says nervous.  I think this would fall under the general anxiety section, of course I’m no doctor so this is just one mom’s opinion.

 I can only think of two times where he had something that would be classified as a panic attack.  He is underweight and it has been an issue for some time.  I was getting into a neurotic state about it and I think I put too much pressure on him.  Twice in one week he complained that his heart hurt and that it hurt to breath.  We ruled out everything medically; EKG, chest X-ray, full blood workup, etc.  In hindsight this sounds a bit like a panic attack, at least according to friends and family that have experienced them.

 Now I would have never thought of Alexander as having obsessive-compulsive disorder because it doesn’t manifest like you see it portrayed in movies, etc.  He is a creature of routine.  He knows how to get to every place we ever go to and if I take a different route he gets a little nervous and then wants me to map it out on the navigational system in our car.  Once we get close to the destination and he starts to recognize the surroundings his nerves ease up.  When he goes to bed at night the pillows must be in a specific order and the closet must be closed.  If a pillow is out-of-place or even backwards it is upsetting to him.

Now that we have a direction to take with Alexander regardig his anxiety I think we’ll be able to make good progress towards resolving it.  We received the Indigo Dreams CDs that I previously mentioned and he sat down and listened to one of them this evening.  I didn’t think we’d be able to get him to sit still for that long but he was really intrigued by them and actually participated along doing the exercises they discussed.  I’ve also started reading my new library additions, three books on the topic of childhood anxiety.  I need to get a bigger bookshelf!

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.

Today was our last meeting with the psychologist and the results are in - it’s not Asperger Syndrome, it is Childhood Anxiety. She feels that when his anxiety manifests it can look very Aserpger-ish but he also has many non-Asperger traits. He scored “very likely” on the Asperger Syndrome Diagnostic Scale but she said the more she uses that tool the less she likes it. I have to agree. There are 50 questions and either you’ve seen the behavior, at any point in time, or you haven’t. Its very black and white but there are many shades of grey with children’s behaviors. Today she administered the Autism Diagnostic Observation Schedule Module 3 and in the communication realm he scored a 2 with 2 being the cutoff for Autism Spectrum Disorder. In the Social (I think she said social reciprocity) section he scored a 4 with 4 being the cutoff for Autism Spectrum Disorder. Overall his score was a 6 with 7 being the cutoff for Autism Spectrum Disorder. He told her several times he was nervous and that in her opinion it was his anxiety coming out that caused him to score as high as he did. He did use nonverbal gestures several times and used intonation in his voice to convey intent which are two very good things.

She has recommended play therapy, a social skills class, a few CDs called Indigo Dreams. The first is Indigo Ocean Dreams and the second is called Indigo Dreams. Evidently they are children’s CDs that help a child cope with stress, fear, anxiety, anger, etc. She has suggested that we listen to them a few times a day during non-emotional times so when an episode comes he is prepared and can listen to the CD and implement the strategies.

I am sad for my son that he has anxiety that is getting in the way of his ability to make friends, socialize, etc but I am thankful that we now know what is going on and can address the issues at hand.

My son saw the psychologist again this morning for an IQ test. The test du jour was the WPPSI-III also known as the Weschler Preschool Primary Scale of Intelligence; this is the same test my daughter took. Evidently the age range on the test is from 2-6. The psychologist had me wait in the waiting room while she and Alexander went through the test items. This waiting was oh so annoying as there was another patient there who had her cd player on very loudly; even though she had headphones on I could hear every note and every word of every song. I was hoping for a nice quiet morning and instead I got distorted music blaring through the headphones of a person sitting a good ten feet from me.

In addition to the test I dropped off all of the paperwork for the psychologist to score. We were originally going to do a follow-up on Wednesday, March 28th but the psychologist would like to see Alexander on Monday the 26th where she will administer one more test and then go over the results of the tests and her ultimate findings with me. On Monday she’ll be administering the ADOS - Autism Diagnostic Observation Schedule. This test was also administered to my daughter. I know my son will score much differently than my daughter did as he doesn’t have the communication delays. It will be interesting to see what the result of all the testing is. Being the impatient person that I am, I’m glad that we are being seen a full two days earlier than I originally expected.