Misdiagnoses are really a pain (a summary)

I think we've had a lot of undue procrastination of getting help and services, not to mention the mental anguish we all went through (or maybe it was just me knowing what I know now) of bouncing back and forth between possibilities that truly required different approaches often to extremes, where one choice may be absolutely right, the best thing I can do for my child/husband OR may be absolutely wrong and the worst thing I could do. So a confused mind does nothing right? Being in limbo on what to do and how to feel is like sitting on a fence - Ouch - but in our situation, not of our own choosing. For my journal's sake, I want to take a look back on our time line....

In June 2006 the Elder became very aggressive at school, 180 degrees of his usual temperament. We removed him from the program due to ugly comments from parents, teachers, and directors who swore they "wanted to work with him." (Translate: don't really want to reimburse your tuition.)

In July 2006 he turned 3. We began seeing a family therapist through EAP.

In August 2006 he was enrolled at Montessori and after 3 weeks was asked to leave.

In September 2006 we established a co-op with his best friend's parents to rotate "home-schooling." Shortly after we had to cease due to biting.

In November 2006 I enrolled him in gymnastics. Behavior at the gym was terrible, but was getting slightly better at home.

In December 2006 the Elder was evaluated through the Knox County School system who said that he was definitely gifted but did not see sufficient evidence of Aspergers to provide any services. (I'm like, what's Aspergers?)

In January 2007 the Elder was evaluated though a private services group and was tagged with SPD (sensory) and delayed motor development. By the end of January he was referred to a psychologist.
Also in January 2007 we had our last appointment with the family therapist who, since July 2006, has insisted not to worry, he will grow out of it, he's just being a boy, everything is normal, just continue being the wonderful parents that you are. Which is exactly what we want to hear, but it wasn't what was happening.
So we were grateful that the private group offered him OT because now we can immediately start solving the issue instead of "wait and see" if he does or does not grow out of it.

In February 2007, I refused to have him evaluated by a psych claiming "he will grow out of it, he's just being a boy, everything is normal" Besides, looking at the DSM criteria, it all sounds like Dad so the Elder just probably takes after Dad and Dad is ok, right?
I did, however, agree to speech therapy, only after confirming with a speech pathologist friend of mine that it was a good choice.
Also in February 2007, I met with the preschool directors to make sure they were ok with my enrolling the Elder into their program given the new information I've been given and the possibility of Aspergers. "Oh certainly, we've dealt with one before." But they did encourage me to go through with an official diagnosis so I have to give them credit for that. There's a silver lining for everything right? So we call to get an appointment with the "best child psychologist in East Tennessee," and we are told, "We'll call you in June to make an appointment." Not an appointment in June, but they will call me in June. Hmmm, it's February....busy guy....he must be good.

In March 2007, the Elder was evaluated for a feeding group for which he did not qualify because he happened to eat everything (or at least try everything) he was offered. Something that doesn't occur at home, but he happened to "perform" well for them, so as joeymom might say "No services for you!" This is the month we also started "brushing."

In April 2007, I am about to go mad in the "limbo state" of not know what in the world I'm doing and not sure what to think or believe about my son OR my husband. Who do I believe? Who do I give the hand to? Seeing how overwhelmed I was and it still being 2 months away from June, the OT referred me to another psychologist. One she had heard nothing about but someone else referred this lady to her. We have 3 sessions with her. The first one I was allowed to sit in on but I didn't realize that she was evaluating how he plays with me (she failed to tell me that). I thought I was just observing. So I didn't know if I was supposed to play with him in a playful way, an educational way, or what. No matter what I was not impressed after the first evaluation.

In May 2007, we were sent to a neurologist who said she saw no signs of brain injury nor did she see signs of sensory dysfunction. My hub was like WHAT? Fortunately he had a polo shirt with buttons and he walked toward the Elder with the buttons out and he just about wanted to jump out the window. The Doc: "Hmmmm maybe we will have him evaluated in 6 months."
This is also the month that we were hit with a gigantic baseball bat. No evidence of any ASD. not ANY. none. zip. nada. now what? We were tasked to stop reading Asperger books for both son and hub, given referrals for parent counseling and marriage counseling. I tried not to be offended. It didn't work.
We also had to stop therapy this month with the private group because insurance all of sudden stopped paying for it.

In June 2007, we finally got an appointment with the "best child psychologist in East Tennessee" as a second opinion. Not because we were convinced that he had ASD, but because now we had no idea why he was behaving the way he was and wasn't "outgrowing it." Something was going on and we just needed a solution, a confirmation of some sort that we either needed to be doing more, or that we were already doing all the right things. Even though his first impression was no ASD, he officially diagnosed him with Aspergers. Hit us like another baseball bat.

In July 2007, Maybe the hub does have it. For me, I was not emotional about the whole package deal I got. I was in "next step" mode. Reading all I could read, googling everything autism and aspergers, starting this blog as a journey journal. Productive in education, but back and forth between acceptance and denial in its applications to our family.
This month we also applied for services for the current school year with the KCS system.

In August 2007, my first cry and entry into the "autism community." Preschool was starting and I was very nervous knowing what I knew. I met with directors, prepared documents, burned CDs for each of them for resources. Everyone was positive and optimistic that they would be able to accommodate him. But the experience was not much less than disastrous and chaotic.
This was also the month of our first ASA meeting where I met live people who are going through exactly what I am. Still unsure of what I believed in as far as theories and such, I still felt like an outsider.

In Sept 2007, we removed (by request) the Elder from the preschool, had him evaluated by the KCS system, attended an Autism 101 class, and got the resource of an online counselor who was willing to diagnose the Hub and also a live person (for me). We started in early September with the online person who after longs days of writing our responses to 45 question surveys (one for each of us) said that he met NONE of the criteria. SHOCK. And the start of my second-guessing EVERYTHING all over again. Is my son really Aspergers? What if it is just this...or that... and the hub is just this...or that....?
Going to the live person the last week of September, I found myself swaying toward the "I don't believe my hub has AS, he's just an insensitive jerk that NO ONE else sees except for me." I was so desperate to find an answer and just feel sane and validated for just one moment, I held nothing back. Her response was "whatever is going on, we can handle it." Well that was nice and positive. She is Super.

In October 2007 (hey wait that's this month - boy do the days drag...), we got an IEP for the Elder - yippee skippee, on the 2nd, and an official diagnosis of Aspergers for the Hub on the 3rd, and the first day at the Special Preschool on the 4th. I think it was the first normal week I've had in 16 months. Our military schedule is working, (with the exception of yesterday but there was no real reason to blog on it since I'm realizing (from Super Doc) that I have to be sole overseer and General for now until the Hub starts his therapy), my Hub is making an initiative to read a book (Attwood), and I'm taking things less personally (Q-TIP = Quit Taking it Personally).

So things are looking up for us since the Hub's diagnosis. At least now we know which direction to go in, now that the dizziness of the diagnosis roller coaster has died down and we are trying to get our life back into a balance. Motivation can be hard just from the mere mental exhaustion, but everyday is a new day, and every day I learn something new, meet someone new, someone new finds me, and even though this too shall not pass, I'm creating a new normal.

Just one question...when do I get me some drugs????

4 Responses to "Misdiagnoses are really a pain (a summary)"

Maddy (visit their site)

You and me both dearie [the pills for us I mean!]. It certainly is a long and bumpy ride.
Best wishes

Bonnie Arnwine (visit their site)

Wow reading your post reminded me of our first year trying to get help for G. It is so hard denial, hope, fearing the worst and swinging between the feelings constantly.

Re drugs: I started taking Prozac. It helped me alot. Anyhow, my friends can't believe I talk about it so freely, but at this point all I'm concerned about is taking care of myself, my family, and Lord willing I can help others along the way.

Casdok (visit their site)

You do have to look after yourself.
Some things will get easier, and some things wont.

KO (visit their site)