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.
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