A Bowl of Alphabet Soup: What's One More Diagnosis?

Well, it's official. We got the Triple A diagnosis.

AAA= Autism Spectrum Disorder/Aspergers, Anxiety, and ADHD

While we're at it we might as well add the others in. Sensory Processing Disorder, Obsessive Compulsive Disorder, and Exotropia. There that sums it up.

My son has ASD/ADHD/SPD/OCD/Anxiety/ Exotropia.

Hmm..Jacob is beginning to sound like a cup of alphabet soup with all these letters floating around.

Sunday night once the kids were in bed, my husband and I spent the evening each filling out individual evaluation forms on Jacob. If you've ever done this, you know how difficult it can be. It is emotionally taxing. It really forces you to look at the reality of how your child appears to others. There are no questions like, "Does your child love to snuggle?" or "Does your child like to laugh and giggle?" or "Does your child bring you joy and happiness?"

No, it's very clinical. And no matter how hard you try to not let your emotions get involved, it's hard to separate it all.

It really weighs heavy on your heart with questions like "My child acts strangely...Never, Sometimes, Often, or Always."

Circling "Always" was hard.

But even harder was reading the answers provided by Jacob's teacher. Somehow I was living in some magical land where at school Jacob acted appropriately and "normal" just like his classmates. Of course I'm not delusional. Deep down I know that Jacob's day at school resembles his day at home. He paces, he hums, he talks out of turn, he invades personal space, he laughs inappropriately, he touches everything, he never stops talking, he lays on the floor, he jumps, he dances, he sings, he never stops moving, he babbles, he picks at his fingers, he picks at his lip, he flips his shoes on and off, he makes silly faces to get a laugh, he talks about inappropriate things, he fidgets, he claps, he interrupts, he stares blankly, he talks to himself. He doesn't fit in.

So of course he acts strangely at school. I had just hoped otherwise. It was no big shock that his teacher also had circled "Always".

Then there are the friend questions.

"Your child makes friends easily."  This question I felt needed an asterisk * with "Please see attached sheet".  First pick the sentence apart. "Makes" sometimes. "Keeps" no. Sure Jacob makes friends easily. When we go to the park, he is always approaching the other kids there and inventing something for them to play, some kind of game or pretend play. He really is good at approaching other kids. And usually it is fairly well received. Younger kids always do well with Jacob and jump right in. Kids his own age, it depends. Older kids sometimes surprise me and welcome playing with him while some just look at my son like he is from a different planet. Even at school, Jacob is right there at recess playing with all the other kids. It's not like he is off on his own doing his own thing. Oh, no. He is right there in the thick of it helping orchestrate each kickball game.

If you were to ask Jacob he would say he is friends with everyone in his class. He'll refer to people he just met as his "friend". It could be a one year old or an adult, or the cashier at the grocery store if they give him enough attention. But Jacob has no idea when that friendship is not reciprocated. Or that someone simply talking to you does not make them your lifelong friend.

I know Jacob is friendly. I'm always telling him that people will like him if he has a smile on his face and says "hello". His teacher has confirmed that and said that Jacob always has a positive attitude. Just picking him up from school validates that for me, as kids from all grade levels are yelling "hellos" to him as we walk to our van to leave school.

But being friendly and having friends are different. Does he have friends? Maybe. Does he get invited over for playdates? No. Are other kids wanting to spend time with Jacob outside of school? Not really.

So the friends questions are hard to answer.

Some of the others are no-brainers. "Does your child seem to be driven by a motor?" Always. "Does your child vomit? Have fevers?" Really...don't they all? "Does your child worry?" Somewhere between sometimes and often, where a year ago it would have been Always. Wow, we've come so far.

But one of the hardest questions for me was "Does your child seem out of touch with reality". Where is "Depends on the day" for an answer?

Jacob's a smart kid. He knows a lot of facts. He remembers everything and notices everything. Is he out of touch with reality. Probably. That's a hard thing to say about your own child. But yes, it's probably the truth. A perfect example is sometimes he will talk to me about some cartoon character on tv as if he knows them personally. The other day he asked me where Team Umizoomi lived. And then we had the conversation about how they aren't real. It's just a tv show. And right when I think we have gotten somewhere he'll say, "But the Fresh Beat Band is real, right? Because you can go to their concert". hmm....we have so far to go.

Lately Jacob is all about recording everything. He wants a video camera so he can record and make his own baseball videos. But just because he doesn't have one, that doesn't stop him. With his foam bat and ball in hand, he is often found in the living room making a video in his head. "Stop. Delete." "Stop. Delete." he says over and over. He'd go on and on for hours if I would let him. "Stop. Delete." I've talked with him how life is not a video. You can't delete it. He doesn't get it. Instead he makes his video in his brain and if it doesn't turn out how he wants, he deletes it.

I hate that I even have to answer that question about my son. I labored over it for the longest time unsure. After much thought I came to the conclusion of "Often."

His teacher chose "Always".

 

Jacob scored high on the ADHD evaluation. In fact, his doctor said you only needed six of the questions to score high, and we had Jacob rated high on twelve of them. So we walked out the door with a prescription in hand, and another diagnosis to add to our growing alphabet soup. We have yet to fill the prescription, but my husband and I both know it is probably the best thing for Jacob. It's just scary and overwhelming right now. A lot to process and new information to learn. But we will get through it.

Walk a Mile In my Shoes before Judging

Usually I am ok with Jacob's diagnosis. I don't let it get me down. There's no pity party. It is what it is, and I try to be as honest and upfront with everyone I meet. Since the day Jacob was officially diagnosed, that is the approach my husband and I chose to take. Tell the world! Educate one person at a time! Gain acceptance and understanding for our son!

But for the past few days I have been in a slight funk about it. That is ever since Jacob's latest appointment with Dr. Two.

We hadn't seen Dr. Two for a few months. Her schedule had been already filled in, so instead of the normal 3-4 week span, it was closer to 8 weeks before we saw her.

The appointment was scheduled for the middle of the day, right over lunch hour. We had no one to watch the baby sister, so our only option was to bring her with us. I knew from the get go that this would be interesting.

Jacob usually gets a little goofy around his baby sister. He enjoys making her laugh and the two of them feed off each other. I love that they both are so fond of one another, but there are times when they both need to learn to stop goofing and act appropriately. Jacob can never tell the difference. This is a constant struggle for us, and it was no different that day in Dr. Two's office.

Right from the beginning, Jacob was in prime form. He was making silly noises to get a laugh from the baby sister. And he wasn't paying attention to Dr. Two. No matter what any of us tried, he simply could not ignore her and keep his focus.

So that was where we started. Dr. Two said it was good that the baby sister was there with us. It gave her insight to what really happens at home. We discussed Jacob and the baby sister horse-playing and not stopping when asked, and Jacob's inability to ignore her. We talked about how when we are disciplining her, Jacob steps in and gives his two cents because he doesn't quite understand those authoritative roles. She recommended they not play much together and to keep them separate, and suggested using playtime as a reward for Jacob. She said Jacob doesn't really "play" with her anyway. I completely disagreed with that as I feel they need to bond as much as possible. If anything, he is learning to play from her. He has done more pretend play in the last year than he ever has! Dr. Two talked with Jacob about ignoring her and being a good role model.

And then somehow it was as if the tables turned.

Dr. Two noticed Jacob fidgeting with his shoes and she turned and asked us why Jacob was not wearing the Converse high tops she had recommended. When my husband said we looked at them, but then I decided we didn't need them, Dr. Two looked to me and asked why.

I felt really put on the spot. I tried to explain, but it just seemed like I was making excuses. And maybe I was. But the real reason, I'm sorry Dr. Two, but there are bigger fish here that we need to fry!

See, the last time we had seen her, we were discussing Jacob being unable to put his own socks on. It was a battle every morning and it took forever to get them "just so". While discussing that, she noticed that Jacob would kick his shoe off and then put it back on. He does this all the time, and I assume at school as well. Over and over he'll kick his shoe off. Mainly when he is bored or anxious. My only concern with the shoes is that it breaks down the backs of the shoes faster and we end up having to buy shoes sooner than later. Her solution was to buy Jacob high top shoes that were double knotted and he would be unable to flip them on and off.

We did look at them. In fact, we had them in the cart. At the time, Jacob was doing roller skating in gym class and all I pictured was him being the only student in the class unable to get his shoes off or on without assistance. I didn't want my son to be embarrassed. I didn't want someone at his new school to tease him. I'm sure there are enough oddities recognized by his peers, I didn't want to add to it.

So sure. I guess, you could say I was enabling him. Protecting him from some future hurt that may or may not happen. I was just trying to make my son not stand out any more than he already does.

But that day in her office, when Dr. Two looked at me, putting me on the spot as if questioning my parenting, I stammered. I didn't know what to say or how to defend myself. And as I stammered, she went on about how I needed to be consistent. How I needed to praise Jacob and not give him mixed messages. That I can't be too lenient one minute and too strict the next. It was as if the flood gates were opened and I was fair game. I could tell she was angry about the converse shoes.

I was biting my tongue.

What I really wanted to say was "Really? Have YOU ever lived with a child with Aspergers? Do YOU know the daily struggles? Do you have ANY idea how truly exhausting it is? How there is never a chance for you to have your own thoughts when your child is around because you are constantly directing them. How having a minute to have a conversation with your spouse just doesn't happen! And don't tell me that I need to be consistent. I AM consistent! Aspergers IS consistent!Don't tell me I need to praise my son when I notice every little thing he does from opening a juice box straw on his own, to doing two rings of the monkey bars on his own, to shampooing his hair by himself, to not interrupting when I am on the phone. I notice EVERYTHING! And I tell him all the time how great he is doing. I'm NOT too lenient with my son. But like any mom, I hate to see my kid struggle. I encourage him to try new things! I want nothing more than for him to gain independence. Trust me, I could use the break! But I also can't spend every second of every minute directing my son, telling him what he is doing wrong or right, praising, rewarding, etc, etc, etc. I also have to and WANT to have a relationship with my son! So until you have spent a day in my shoes, I could give a damn about your converse hightops!"

Of course I didn't say any of that.

As I tried to defend myself, I said something about that I am consistent. That I do praise Jacob. And just that it is exhausting and frustrating at times. I said it quietly holding back tears as if I was being scolded like a child.

It was near the end of our session. It was then that she recommended getting Jacob evaluated for ADHD. We have talked about it before with her and with Dr. One (Jacob's psychologist). Dr. Two always says she believes that Jacob does have it. Dr. One thinks no.

Dr. Two handed us each evaluation forms wanting both my husband and I to fill them out separately. To which she added, "I'm sure we will see very different results." I was insulted. I knew what she was insinuating. I'm guessing she thinks I have my head stuck in the sand about Jacob. She couldn't be further from the truth. I want nothing more than to help my son. I've read every book out there, spent countless hours looking online for the right diagnosis and therapy, talked to others online to gain more insight.

And so we left, with forms in hand and a set for Jacob's teachers. On Monday we meet with Dr. One to go over the results. We'll find out if there is an additional diagnosis of ADHD giving him the AAA diagnosis that typically goes hand in hand. Autism Spectrum Disorder, Anxiety, and ADHD.

It's not that I am scared of adding another diagnosis. It just seems to be bringing back a lot of those familiar feelings prior to Jacob's Aspergers diagnosis. Hopelessness. Worry. Sadness. Frustration. So that's where I am. In a slight funk the past few days. I am NOT in denial. And my head is NOT stuck in the sand.

The Morning Reminder List

It started with just a comment from Jacob's teacher back in September. While picking him up, I asked how his day had gone, and she mentioned that he had been playing a lot of baseball with his pencil during class when he should have been doing his work. She asked if I could talk with Jacob about it, and I promised I would.

So for the next week, I hit it hard. On our way to school each morning, we discussed the rule of no baseball playing at school, and when and where it would be appropriate. There were promises of treats and rewards, and Jacob did great. Within a week it seemed he had it down and baseball playing was done at school.

But I continued with my morning reminder every day, right as we were pulling into the school parking lot.

And then I picked him up from school again.

"Well, we kind of had a problem with Jacob climbing the bathroom stalls today," his teacher told me.

I nodded as she told me the details about what had happened earlier, and knew I would be adding that to my baseball pencil reminder each morning. Who did my son think he was, Spider Man?

I wasn't shocked by the climbing of the stalls. It had happened the year before at his old school, and I should have known to have talked with Jacob about it before he began his new school. The thing with Jacob is, he can't transfer one thing to the next. Just because it had been a rule at his old school to not climb the bathroom stalls, he wouldn't put it together that his new school would have the same rule. No one had told him, so it was fair game.

So as we pulled in the next day, I began our little talk while driving on the street before the parking lot, making sure we had plenty of time to cover both the pencil baseball and the bathroom stall climbing.

Gradually in the last two months, more and more rules have been added to our morning reminder list.

Let's see....

No hitting friends, no spitting, no falling out of your chair...

The list was slowly getting longer week by week.

And then I got the phone call from Jacob's principal. It's never a good thing when the principal calls. Apparently Jacob had been "tooting" on some of his friends or just "tooting" in general to get a laugh. Yes, my son's developmental age is a little behind. Passing gas is hysterical to him right now. So that was an interesting conversation with the principal. Jacob got to spend the better part of the day in the principal's office doing his school work. Thankfully she is an incredible woman and very tuned in to Jacob and wanting to help him at all costs. She knew that a day of sitting and just doing work would be an impossible task for Jacob, so she would set a timer for 15 minute increments and if he did his work he could spend a few minutes with her looking at a book or talking. At one point she had him go an entire 30 minutes solid of doing work, and if he could do it they would sing a song together. And Jacob did it! I still laugh when I think of Jacob and his principal in her office singing "Forget You" by Cee Lo Green.

And so the list was getting longer, and our morning conversation was now starting as we turned into the subdivision of the school.

The next week added another. No showing private parts. EVER!

Yes, my son thought it would be funny to shake his naked bottom at a boy in the bathroom. Really Jacob! What were you thinking? (Again, why had I not gone over that this was a rule at his new school as well?)

When I asked him about it, he told me he was mad at the other student because they were laughing at him for something he had done. So we went over what he could have done instead and that showing your privates will only get you in trouble EVERY time! There was nothing funny about it.

Again, we added it to the morning list.

For awhile, the morning list stayed the same with no new additions. That is until last week.

"How was Jacob's day?" I asked his teacher.

"Great! He had a great day! But we did have to have a talk about him singing songs with the word sexy in them, and at lunch not pulling the outsides off his corndogs and calling them weiners."

UGH!!!!

So again, we added them to the list and had a lengthy discussion. The funny thing is, Jacob really has no idea what he is saying. He doesn't even say the word correctly. He says "EX-SEXY" instead of sexy. For the past month he has been walking around the house singing, "Heyyyyyyy EX-SEXY lady...". Oh yes, we are doing it "Gangdum Style" at our house.

And if it's not that song, he's singing, "I'm EX-SEXY and I know it".

So Jacob came up with alternative lyrics. He is now singing "I'm happy and I know it" and "Heyyyyyyy Silly Lady...". Both much better choices for a seven year old and school appropriate.

I probably should have squashed it earlier, but I figured it would be short lived like every other pop song, and since Jacob didn't know the meaning of the word, I figured it was just best to not draw attention to it. Now he is quick to point out any time anyone says the word "sexy" although he still doesn't know the definition.

As for the corndogs...he heard a friend of ours refer to hotdogs as "weiners" and thought it was funny. Again, Jacob just has no filter as to what and where things are appropriate. But even funnier is he thought it was in reference to weiner dogs!

And so my list for Jacob keeps growing and growing. We now start our discussion as we round the corner from our house heading towards school. We just finished the first quarter of the school year with three more quarters to go. Pretty soon we will be circling the block a few times in the morning.

I'm thinking by May we will be leaving an hour early and taking a drive on the highway to get the entire list discussed.