Happy Birthday, Little Bear!

We’ve been missing in action because Little Bear turnScreen Shot 2016-08-20 at 12.55.28 AMed TWO last week! We took him to Disney World to celebrate.
Disney has a special pass to let ASD kids wait in line without actually waiting in line. I highly recommend it for any family with a child on the spectrum. It was life-altering for us.

We actually almost missed Disney because he spiked a 105.8 degree fever on Wednesday night. We took him to the hospital. Twice. Luckily it was gone by Friday morning and all he had left on Saturday was a bit of a rash. We were good to go and we’re glad we went! The boys had a wonderful time on Saturday. Sunday was a bit stressful and we ended up cutting out early because both of our little cubs were exhausted from a long week.

So… happy birthday, Little Bear! May your life be filled with love, happiness, and success. Mama and Papi Bear love you with all their hearts. And probably Big Bear, too, although he doesn’t say it.



When you have a special needs child, one of the biggest challenges is learning to juggle your schedule and accepting that one parent must give up at least part of his or her career in order to accommodate that schedule. Since I work from home and have a relatively flexible job, it has fallen on me.

We’ve worked our way through denial and have accepted the reality of Little Bear’s diagnosis. We saw two weeks of fast and impressive progress, but the bad days remind us of the reality we’re facing. Yes, he is becoming more and more expressive with each passing day. Yes, he looks at us very intently when we play with him now. Yes, he now predicts what’s coming in almost every letter of Dr. Seuss’s ABC. But that doesn’t negate a diagnosis.

We had the ASD branch of the local Early Intervention group come out on Monday to do an evaluation and see if he qualifies for more services. We were sure they would be like, “Oh, he’s doing great! You have nothing to worry about! It’s just ADD. You’ll see.”

That was not the case. Not at all.

Little Bear was not in top form when the ASD people came. I had told Papi Bear to wake him up at 7, feed him, and have him ready to start the day. Papi Bear woke him up at 8AM and the appointment was at 8:30. He was still morning cranky when they arrived and wanted no part of anybody because he hadn’t eaten yet.

Throughout the observation, they told us all of the signs they saw. And as a mother, I naturally tried to explain them away. My heart knew they were right, but that’s just me as a mother trying to be a mother.

By the end of the session, he had been approved for an extra two hours of therapy a week, bringing us to a grand total of 3 and a half hours weekly. We still want more, though. His neurologist gave him a prescription for OT, PT, and ST. We’re in the process of talking with a private agency that handles the therapy for a friend who has a daughter who was a micropreemie triplet and has been very happy with all of her daughter’s therapists. They will definitely be able to provide OT, but they need to check to see how Early Intervention is charging his ST (he’s approved for Feeding Therapy) and what his maxes are for PT.

Papi Bear feels that this isn’t enough. I personally don’t know what enough is, but I would be happy with 1 hour a day every day, if we can get it. Even though it’s just playing, therapy is rough on him and after 30 minutes, he’s usually tapped out., The kid is two. Recently 2. Two to three hours of therapy a day is hard on a full grown adult!

Our other movement towards a better outcome for our son is changing his daycare. His now-former school used to be great. We enrolled his brother there shortly after Little Bear was born. It was a small, homey non-profit that really focused on being accessible to all types of families. We loved it!

I have no idea what happened over the past year, but it has taken a nosedive. There were a few small incidents. We were never huge fans of the two year old teacher, but we loved the one year old teacher and the three year old teacher. We figured she’d eventually get fired because she was awful in comparison. Honestly, I wouldn’t be altogether shocked if she contributed to the downfall of the school.

Last summer, the school was full. There were tons of kids there for camp and it was like walking into a circus in the morning. SO MANY CHILDREN. This year? I’d be surprised if there were a dozen kids in the entire school. The three year old teacher left and she hasn’t been replaced in 3 weeks.

Big Bear now goes to public school during the school year, but we put him in daycare over the summer since he didn’t qualify for summer school. By the end of the summer he was holding his poop in for 3 days at a time after he had been REALLY close to being potty trained when he finished public school in May. Last week I dropped him off at school and he told me, “Mama, no quiero cole. Quiero otro cole.” I felt awful having to leave him there, but we had no choice, since school doesn’t start here until the 22nd.

After a month of listening to my children saying they don’t like it there and Little Bear screaming when we left him, we decided something needed to be done. We went to a much more expensive school near Papi Bear’s job and decided to put Little Bear there. They said the next opening would be October 10. We paid the downpayment to hold our spot. He can only go 3 days a week now, but I’ll just reinforce his therapy those other two days while he’s with me.

After we told the old school that Little Bear was going to change in October, they said we still have to pay the $100 registration fee for the year or he can’t come back on the 22nd. We said, “Look. We know your enrollment has tanked. We’re not paying $100. You can either accept our money for the next six weeks, or we’ll just pull him and keep him home with us.” They said they could bring it down to $75. My husband was still not happy with that, so he went to the new school and told them our problem. They said they would be able to take him on August 29th. So we have one week where things will be difficult, but we’ll get through it. It’s better than dealing with them for another week.

And now I’m rambling because it’s 1AM.


We’ve had quite a busy week with Little bear. Both Papi bear and I have been working as hard as we can to get him on track developmentally. We read, we play pretend, we roughhouse with both our boys – whatever it takes to get Little bear engaged.

And it’s working! It’s working incredibly well.

This week he started saying a bunch of new words regularly: No, papi, “Gracias, Little Bear (except his real name),” uva, meow, the letters i, t, d, and z(eta). He’s using old words like bubble and ball more often. He repeats new words more often, even if he hasn’t incorporated them into his vocabulary yet. We see him on the cusp of learning and we’re thrilled by it.

He’s also growing socially. He’s starting to seek approval every once in a while. Not consistently yet, but sometimes when he’s watching TV, he’ll look up to see if you’re watching, too. He especially does this when it’s something he’s really enjoying. He’s done it a few times when playing with puzzles as well. He’s searching for approval and for us, that’s huge.

He’s starting to fight with his brother. Previously he just cried when Big bear bothered him. Now he defends himself by pinching, biting, or pushing back. He’s not doing it unprovoked – he’s learned that his brother feels pain, too, and it makes him stop hurting him.

Finally, Little Bear has found a new love. Kung Fu Panda. We rented the third installment last night and Little Bear was mesmerized. He’s always been a movie fan, but this was Screen Shot 2016-08-07 at 9.49.06 PM.pngdifferent. This was like his entire spirit lifted. He laughed, smiled, growled, and actively watched the entire film from the beginning until the end of the credits, and then went up to the TV and touched it when it ended because he missed it.

Ironically, it wasn’t the panda he liked. I mean the panda was cool and he laughed when he did funny things, but the villain… that was who he adored. He literally squealed with joy every time he came on screen. The action scenes had him literally at the edge of the couch in suspense. He enjoyed the third one so much that we finally watched the first one, which has been sitting on my Amazon Prime account for at least six months – there was a giveaway when Kung Fu Panda 3 came out and I downloaded it “just in case.”

I’m glad I downloaded it.

He loved it. The leopard? Oh god. He sat there growling at him every time he fought the panda. Growling and laughing. He was in heaven.

I think we have a lot of Kung Fu Panda in our future.

Reaching Targets

Today we went to Target with Grandma. You were crying and whining when I sat you in the cart. I thought you had anxiety. I put you on the ground and it turned out you just wanted to walk like your brother.

You were so good! You never went more than one aisle away. You ran down to the end, hid at the endcap and then looked around, laughing and giggling because mommy was far away. I said, “Little! Bye bye!” and you responded, “Bah-bah!” and blew me kisses. I started walking away and pitter patter pitter patter… you were chasing after me.

You and your brother wanted a ball. They were on clearance for $1.48. Grandma bought each of you one. You wanted a blue “bubble” just like your brother had. No way could mommy get you the white one instead. You wanted to be like your big brother – he’s your favorite person ever. Both of you ran ahead of us, chasing your oversized balls, laughing all the way to the checkout.

You made me feel much better about the day.

You were playing, you were using words, you were interacting with all of us, and you were responding to simple commands.

I’m very proud of you, Little Bear.

Testing 1…2…3

Today was our first appointment with the geneticist. She started throwing out all these Screen Shot 2016-08-02 at 11.26.56 AMsymptoms and possibilities, and we just answered questions about our family history as best we could.

History of seizures? No. In the family? No. What did your father die of? Heart disease. And your father in law? Pneumonia. Do you know of any person in your family with a learning disability? No, not that I’m aware of.

Lots of questions. No answers.

A form to take to the lab later today. Results will be back in three months.

Will we find out anything before then?

If something comes up on the exam, you’ll be called in earlier.

I hope the phone rings the day before to confirm the appointment. This is a doctor I wouldn’t mind getting no answers from.


I suffered from depression as a pre-teen and teenager and my only way of breaking through was musicals. I was completely absorbed by them. Sondheim was life. Jerry Herman was happiness. I made a sort of soundtrack to my life using songs from shows. Every single important moment that has happened to me has a matching song – no lie. I even had a breakup song broken up for the inevitable end of my relationship with my now-husband. Luckily, I never needed it.

Not to diminish the pain of parents who have lost a child, but this is the song that has resonated most with me as we’ve dealt with Little’s diagnosis. My husband and I haven’t talked about the diagnosis with many people. He just told his mother for the first time today and she hung up on him and cried for a half hour before calling him back. We’ve been very private about our pain. My only outlets have been this blog and two friends that I’m in a group chat with on Facebook. I have no energy to discuss it daily with my real-life friends or even my family beyond my mother and sister. So I keep to myself. I take walks. I cry silently. I cry out loud. And I hold my boys as though they were slipping from my grasp.

There are moments that the words don’t reach.

There is suffering too terrible to name.

You hold your child as tight as you can

And push away the unimaginable


I spend hours in the garden

I was alone to the store

And it’s quiet uptown.

I never liked the quiet before.

I take the children to church on Sunday. A sign of the cross at the door.

And I pray

That never used to happen before.


If you see him on the street, walking by himself, talking to himself, have pity…

He is working through the unimaginable.


There are moments that the words don’t reach.

There is a grace too powerful to name.

We push away what we can never understand.

We push away the unimaginable.


I fought to carry Little bear to 42 weeks against my OB’s advice. My first son had been a planned c-section and I wanted Little bear to be “natural” and “come when he was ready.” Little bear was never ready. He was finally induced at 41 weeks, 6 days and was born 33 hours later. Ever since his diagnosis, I’ve wondered if my bad pregnancy decision affected his outcome.

The neurologist told me no, it doesn’t seem so. He told me if he was born pink and crying with no signs of oxygen deprivation, if I had regular BPPs, if he was a normal weight, and there was no mention of placental inefficiency, I did nothing to hurt my child. Yet, I wonder. I want to go back and be induced on my due date. I want to know if it would change this pain our family is going through.

My husband needed some time alone last night to think and read. He went onto the CDC’s website and austismspeaks.org to read more about the disorder. He came back to me an hour later and said, “I think I might be autistic. What I’m reading sounds so much like me.”

My husband has told me often that he can’t remember his childhood or any unpleasant event from his life. He said it’s not a normal, “I don’t want to remember,” situation: He literally cannot recall his past and it caused him a lot of pain when his father passed away four years ago.

He has the ability to block out the world when he concentrates on something. He can easily go twelve, sixteen hours by himself working on a project without coming out to eat or drink. He is passionate, dedicated, and impossible to stop when he has something in his mind.

He has never been popular. He has “friends,” but he really wouldn’t be very bothered if he never saw any of them again. I was his first and only serious relationship. He’s the type of person who walks in a room and automatically assigns “roles” to people rather than deciding if he likes people or not. People are there for reasons, rather than relationships in his mind.

I told my husband, “If being autistic means that our little boy can be exactly like you, then I’m thrilled at the prospect.” Because there is nobody I love and admire more than my husband.