Nothing at all or way too much?

A few weeks ago, we had a play date with new friends. The other child is also on the autism spectrum. His mom said something that really stuck with me - kids on the spectrum are sweet, innocent in a way that other children aren't. She said that she really loved that about her child.

I kinda shrugged it off, agreed but then talked about something else. It made me uncomfortable. I'm not sure why. Maybe it was something about finding some good in all of this - the behavior management, the food restrictions, the insane amount of effort it takes just to get through a day. Sometimes you're just too tired to find any good, or afraid that talking about it might make it go away.

As the days went by, I continued to think about what this mom had said. In fact, I couldn't stop thinking about it. I thought about all of the kids I knew who were also on the spectrum, and was struck by this commonality in all of them. Maybe sweetness isn't the right word - it's more like a purity of heart. It's certainly that way with my Diego.

If you haven't spent time around kids on the spectrum, a common misconception - even among autism professionals - is that spectrum kids don't want to make emotional connections. Nothing could be further from the truth. Our kids want desperately to connect - sometimes they just don't have the tools to do so. Some of the obstacles that stand in the way can be low language skills, visual or auditory processing disorders, social anxiety, sensory integration challenges, or difficulty with executive functioning (poor impulse control).

Recently, though, I read a study that got me thinking about how my son interacts with others and what gets in his way. Diego is the most loving child you might ever meet. He is sweet and empathic at times. While at other times, it seems there is a complete emotional disconnect. If he's confronted by another child's emotions Diego may internalize them as his own - insisting that he's the one that is angry or hurt. This of course, can upset the other child - but Diego is actually over-empathizing. He really feels the other child's emotions as his own. It's this inconsistency that affects relationships. And that's where the study comes in.

As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.

“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.”  (http://tinyurl.com/pajrrk)

And of course, if you are overwhelmed by emotion - it is easy to just shut down. Imagine if 24-7, you always felt like the dial was up to 11. Imagine the coping mechanisms you'd resort to... tantrums and withdrawal don't seem that far off. 

The tricky thing is that sometimes you just can't know when the hyper-emotions will pop up. Last week Diego and I were on the subway and a man on the train was asking for money to buy food. Naively, I asked Diego if he was willing to share the snack we had in our bag with this hungry man. Well, that launched us into a very intellectual discussion about why the man was hungry, didn't have a job, why, why, why... my mistake.

Later on, Diego was crying. We had already been home for an hour or so. When I asked him why he was crying, he said it was because the man on the train was hungry and had no one to take care of him. He wanted to go back and give this man his snack. It broke my heart. It also reconfirms in my mind, that children on the spectrum are capable of so much more than they are given credit for - and that truly overwhelms me. 

what's in a name?

I started this post nearly two months ago.

We had a diagnosis - combined type ADHD. Well, that's in addition to the SPD - which is not generally recognized as a diagnosis. I was ok with ADHD.  I expected it. But then there was another...

Aspergers.

When you're pregnant, there are always things you worry about - sometimes irrationally. We have a lot of neurological issues in our family. I worried about my baby being born intersex (irrational) or having Autism (not so irrational).  And now, for now, Diego is on the spectrum. His diagnosis could change at any point - even in just talking to one clinician over another. There are so many comorbid symptoms with neurobiological disorders  - it makes diagnosis really challenging.  He does have AS traits, though they're not severe. It could be that the sensory issues are causing the ADHD issues. Who knows. Is it the chicken or the egg?

I was ok for a bit after I found out. I told my self everything I was supposed to - the diagnosis doesn't define him, he's still the same kid, his issues are still the same. Nothing had changed except we had something to call it. Until I had to say it out loud. That's when the uncontrollable sobbing began.

It's been a few weeks. I can talk about it now without crying. And while I do have those flashes of sadness from time to time, most of the time I am just so in love with my sweet little boy - there is very little room for sadness.

Thanksgiving

I used to hate Thanksgiving.

For the life of me, I couldn't understand why we would celebrate a fairy tale, while ignoring how the indigenous people of this land suffered at our hands.  When it was my turn to say grace at the table, I always said a prayer remembering the people we displaced, segregated, dehumanized in the name of our own "freedom." Needless to say, I was the downer at the table.

Many, many years later, I am still not crazy about this holiday. I would rather we have an Indigenous People's Day or a Harvest Celebration and just be rid of these holidays that discount the experience of those who were here first.  But, I have been able to find personal meaning in this day as I become more aware of the politics of food, and the importance of supporting local farmers. I am thankful for my local CSA and the bounty of food that we have been blessed with this past season, despite many challenges. I can celebrate the harvests of the farmers on Long Island who provided my family with fresh, organic produce over the past six months.

And there's the other part of this equation - my family. I can finally feel real thanks and appreciation for family. Growing up, my family life was challenging. So while I did love my family, we weren't close. Today, though, I have that feeling of true gratitude and unconditional love. I owe that to Diego - my sweet baby - and all of the challenges that have come along with him.

Diego has Sensory Processing Disorder, which in general makes me alternately crazy and sad. But SPD has actually given me a gift. To help Diego, I have had to slow down in a way that would not have happened with a neurotypical child. It was forced upon me. I had to slow down so he could be ok. When you can do this, and really meet your child at their level - special needs or not - it is an amazing gift, an opportunity to understand love - to truly give love to another person. However I have had to get to this place, to this bond with my child, I can honestly say that I am grateful.  And that is what I will celebrate on Thanksgiving.

Zyrtec = One Crazy Kid

Yesterday, I took my son to the doctor. He has had a cold since he started back at school again in September. I have taken him now to three different doctors. All the same diagnosis. It's a cold. Well, thanks I already knew that. At least the doctor we saw yesterday told me to do something more than saline spray.  Now, I don't like medicine. I am anti-medicine most of the time.  But nothing seems to he making a difference in Diego's cold. So, now my options are antihistamines, antibiotics, or albuterol.

I decided to start with the antihistamines. (I had already given him benadryl with little to no effect.) As I stood in CVS weighing my options, I took Diego's food sensitivities into account. I chose dye-free, sugar-free zyrtec - for indoor and outdoor allergies. I figured I had all my bases covered. So, off we went to our lunch date - a mama and the light of her life.

As the day went on Diego became antsy. He was snappy, almost obnoxious. He is not a kid who answers back unless something is going on with him. I assumed it was because we hadn't been to the playground. We got through the day and I was glad for bedtime.

Why...

The psychologist I spoke with this week, told me to make an appointment for my son with a pediatric neurologist. She said that the episodes of zoning out could be petit mal (absence) seizures. I’ve been up and down emotionally in handling all of his issues. Things aren’t too serious; let’s face it, it could be much worse. But since I made the neurologist appointment, all I feel like doing is crying.

I shouldn’t be surprised with all of the neurological issues in our family – adhd on both sides, depression, anxiety, tourette’s, dysgraphia – I thought I had prepared myself for the reality the Diego might have some challenges. I’m thankful it’s not more serious. But I just can’t seem to wrap my head around the fact that this is his reality.

My beautiful, sweet, and oh so smart boy – why should he have to deal with these things?  Why can’t his body stop moving, why can’t his father pick him up for a hug, why can’t I get a picture of anything but the back of his head? Maybe it’s because we’re moving towards getting a true diagnosis for him, that I am feeling so sad for him. Sad for us. His life won’t be what I envisioned. I’m not talking about some fantasy that my kid will be the president or a famous doctor, or anything like that. I never wanted to plot out his career path. I’m talking about a life where living up to his potential isn’t a daily struggle, where he can do things that other kids get to do; have a spontaneous, whimsical day; eat pizza, be able to sit down and read a book.

I know that I'm grieving. I want him to have the world at his fingertips. Everything is just so much work. Even simple tasks. Go get your shoes. Time to go. Walk to school. I know life isn’t easy. But childhood should be. And for my beautiful boy, it is not.

Diego's Birth Day

Somewhere around 2am on August 7, 2005, my water broke. My husband and I had just had our final round of pregnancy sex. When I got up to go to the bathroom, I felt a small pop, and then a stream of warm liquid. It was much more then a trickle, but not the gush I was expecting. I went to the bathroom to see what was going on. I cleaned myself up a bit and then went to tell Jim and call the doctor for advice. I never expected my water to break first.


When the ob called me back, she asked about my contractions – which were maybe 10-12 minutes apart - and pretty mild looking back on things. She suggested I try to get some sleep as I’d need my energy later. Of course I felt too excited to sleep, but I did lay down for a while. It was about 3:30 am. I must have dozed off, because the sun was up when I got out of bed. I took a shower and got dressed. My contractions had slowed down by then and I was getting antsy. I went to the kitchen and started to make the birthday cake for our son who I hoped would be joining us very soon. I had read about a birth-day cake in a book called Birthing from Within and it struck me as a really nice tradition to start for my family. My husband looked at me like I was a little wacky, maybe he thought I was kidding when I first mentioned it a few weeks prior. Either way, it took my mind off of the anticipation of the next contraction.


Throughout the day, I paced around the house, watched tv, sat on the birthing ball. I thought about going outside, but really didn’t want to while amniotic fluid was leaking out of me. Looking back on things, I’m sure it would have been fine. Everything seems much more dramatic while you’re actually in labor. (Add that to the list of things people should tell you about child birth…) Of course, without a strenuous walk, my contractions were not progressing. While my husband watched what seemed to be endless amounts of Dave Chappelle, I started to loose it. I was becoming very cranky. I can’t remember if I ate anything, though I’m sure I must have. I drank water, juice, and tea. I packed and repacked my hospital bag and tried to read. The day just seems like a big blur now.