Papi!!!

Little Bear has been going through a Papi Bear phase lately, but it has always hurt Papi Bear that he doesn’t say “Papi” (or Mama, for that matter). He’ll say it when he’s not around, he’ll say it when he’s gone, but he never says it to him, and that’s what really matters to us.

Today we decided Little Bear would come home from school at 11:30, because it seems that most of his trouble happens in the afternoon. Papi Bear dropped him off at 11:45. I opened the door and Little Bear smiled at me and said, “Hi!” I said, “Papi! He said hi!” Little repeated, “Hi, mama!” and giggled as I took him out of his car seat. I held him up to the window and he pointed at Papi Bear and said, “Papi!”

Me: “Dijo Papi! Lo escuchaste?!”

Papi Bear: “Parece que si, no?”

LB: Papi! Papi!

Papi Bear almost cried. I could see the tears as he said, “Por fin, hijo. POR FIN!”

And then LB proceded to have a complete meltdown because Papi Bear had to go back to work. Five minutes screaming at the door, “PAPI! DADA! NOOOOO!” I opened the door and he ran to the end of the driveway and looked for his Papi, screaming because he wasn’t there. I dragged him back inside and called Papi Bear through FaceTime. I handed Little Bear the phone. Little Bear calmed down. They “conversed” for five minutes and LB kept his own face visible the entire time. When Papi Bear said he had to go, Little Bear said, “Muah, Muah, Muah! Bye Bye!” and blew kisses to his Papi. He didn’t cry at all when he gave it back. He took his milk, went to bed and is now napping happily.

And Mama Bear and Papi Bear are both so happy with their little boy’s new milestone.

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Gifted

When I was a child, “gifted” was a bad word to my mother. I was labeled as “gifted,” but she refused to let me take gifted classes. After a year of repeatedly telling her how much more advanced I was, my mother relented and let me take gifted English/Writing. I have very few memories of second grade, but I remember that class and how much I loved it. I wish my mother had allowed me to take other classes as well. I promised myself that when I had children, I would never stop them from reaching their full potential through gifted courses. Now, as a parent, I just want my child to mainstream and have a fulfilling life.

Little Bear is 2/3 of the way through his probation period and has had exactly one biting incident – and it was in retaliation to another child scratching his face to take a toy, so we forgave it. He was also bitten pretty badly by another child in the classroom, but the teacher didn’t notice, so we have no idea what happened there. A sigh of relief is being breathed all over our household. We hope that he can stay in school because he needs it.

screen-shot-2016-12-19-at-1-30-44-pmLittle Bear’s communication is progressing rapidly. He’s learning lots of new words and starting to use signs consistently for words he’s unable to say clearly yet. He’s learned a lot of new words from the youtube station “BabyRadio” and makes the noises for the animals whose names he can’t say. He’s using the signs for more, bye bye, hello, again, and all done consistently and he’s constantly throwing in new signs that I have to ask friends who are hard of hearing to interpret for me.

Watching him grow and mature makes me thrilled beyond belief, but I still mourn the fact that he isn’t where other children his age are. While other moms compare how advanced their children are, I continue to be proud that today he followed most of the directions I gave him, even though he didn’t answer any of the questions I asked him.

I wish my life followed this e-mail that I received from Baby Center. I would love to be concerned about what area he’s “gifted” in, but instead I’m celebrating the fact that he clearly yelled for “Papi” on Sunday when my husband was the only one who hadn’t gotten out of bed yet. It was the first time he had clearly called for either of us multiple times, which brought Papi Bear close to tears. We realized that Little Bear does, in fact, know us as Mama and Papi, but he hadn’t realized that calling those words would bring us to him. I think he might be starting to understand the concept now, which is another milestone we’ve been waiting a very long time for.

Our child may or may not be gifted. We know he is a gift to us, without a doubt. Our life now is preparing our child to communicate effectively and make him smile with us. It’s piggyback rides and BabyRadio. It’s eating and stuffed animals. It’s realizing that the small things count and thinking maybe we’re lucky to get an extra year of baby phase with our boys. They grow up too quickly and we get to make it last a little longer.

Two Magic Words

There are a few moments that every parents holds their breath waiting for, knowing that that moment will forever change the relationship they have with their child. The first step. The first solids. The first time sleeping in their nursery. Perhaps the most eagerly awaited milestone is hearing your child say “mama” and “papa” with intention. When you have a child on the spectrum, this moment may be years off.

Little bear started talking on schedule. His first word was “all done.” He also picked up “high five” “ball” and “leche.” But no words to refer to Papi Bear or myself. We pushed him, urged him, prompted him, with no result. Our best outcome was the nonspecific “beh beh” to refer to either of us in times of separation anxiety.

Today I took Little Bear to the grocery store. He didn’t want to be in the car anymore and was getting whiney. I pulled into a spot and checked my phone for a moment.

Mama

No. I must be imagining it.

Mama!

I wasn’t. Little Bear called for mama for the first time ever.

Papi Bear said he called him Papi clearly today when we left him alone with his OT for five minutes and he wanted him to come back.

One day at a time.

Oh, and his brother got a car bed today. He called it vroom vroom.

Family talks

Papi Bear and I talked about the other night and tried to see the issue from both sides. He started off by saying he absolutely did not mean to imply that he doesn’t believe our son has PDD or autism. He said he accepts the diagnosis and is not in denial. His intention was to say that he feels using earphones would push his therapy back and/or keep him from advancing towards different coping mechanisms because, in general, he does not have sensory problems when it comes to noise.

I explained my side of the issue. First, our son is two years old. While we are starting interventions early, the fact remains that…. he’s two years old. He doesn’t understand things on the scale of an adult. While we hear a loud mix of background noise, he may be focusing in on individual conversations and it’s overwhelming – especially at an age where he’s just starting to grasp language himself. I tried to explain the concept of an autism meltdown to him and how removing him to walk around the buffet area is not curing it – it’s just improving the situation for five minutes and then throwing him right back into the torture afterwards.

We came to a truce at the end. He understands where I’m coming from. I understand where he’s coming from. He said he’s okay with it in extreme situations such as what went down at Tusker House, but not when he’s just a little cranky, such as when we go to IHOP or Denny’s. I’m fine with that. When we have a normal family dinner out, he usually can walk him around the restaurant, come back, and Little Bear will eat his food with no problem.

Today’s new achievements:

Little Bear was extra cranky when he woke up. I think he’s going through a growth spurt because he slept like crap last night and he usually sleeps like a rock. He also got up earlier than usual. So instead of doing our normal language work in the morning, we went to the park to work on our climbing, as per PT’s orders. There was a little girl there who looked like she wanted to play with Little Bear, but he just ran right by her. He smiled at her a few times, but in general, he didn’t care. This is one of his strongest symptoms. We’re hoping this will improve once he starts at his new school on Monday.

He started to sit down around 10AM because the sun was getting stronger and he was hot. We went to the science museum to visit the otters – his best friends in the world. They were busy fighting and only occasionally came out near the glass. However, every time they did, he went CRAZY! Laughing, smiling, jumping, running alongside them at the window. He adores those otters. He did a lot of pointing at the museum – mostly towards where the otters are.

He took his nap afterwards and woke up in a pretty good mood. He saw I was working and immediately closed by computer, telling me, “Ah dah,” which means, “All done.” He started playing with his stringing beads and he started counting, “nuno… doh…. tre…. cato!” (uno, dos, tres, cuatro). He picked up one of them and said, “circulo.” He’s said circle and circulo before, but he followed it up by saying, “yellow.” And it was, indeed, yellow. Grandma said he said green today, too.

Later in the day, I got a call from Papi Bear. I put him on speaker. He picked up the phone off the table and, for the first time, held it to his ear and started saying, “owa? owa? alo? alo?” Even after Papi Bear hung up, he still picked up my phone every time he saw it and said his form of hola and hello into it. I was THRILLED by this development!

Also, we finally have his ABA therapy planned. He starts on September 28th.

Great things are happening for Little Bear!

Ramblings

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.

Guilt

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.

Acceptance

My husband and I didn’t really talk about Little bear when he arrived home from his trip on Friday late afternoon. I was excited because of the progress I’d seen from working so hard with him. He was answering to his name one in five times (twice as often as before), he was pointing to a few different items in books, and he was making eye contact a little more often. The world seemed rosy on Friday night.

Then today happened.

Little bear was cranky the entire day. He woke up early, went to nap late, and we had to wake him up around 5:30 so he wouldn’t sleep into the night. He didn’t want to be apart from mama, but neither did his brother and it was just a non-stop day of fighting and arguing between them.

We finally got them to bed around 8 and my husband and I sat down in the bedroom and pulled out our external hard-drive. Big bear had been speech delayed, so we wanted to see where he was a few weeks before his second birthday. He’s close to normal now – he has a few quirks, but nothing hugely concerning.

We watched for about half an hour. Big bear was saying about 4 words with regularity at two, which is about on par with Little bear. There were differences, however, that cannot be ignored.

Big bear’s words were: mama, dada, gata, caca.

Little bear’s words are: ball, bye-bye, leche, all done, up, beh-beh (used when mama or dada leaves)

Big bear’s words were words that communicated with the living beings in his circle. Little bear’s are things he likes or things that get stuff done.

The other difference was saw was the communication with us. Big bear constantly looks back at the camera for approval. Little bear just does his own thing. He rarely searched for approval. This sealed the deal for my husband and I.

We hugged. We cried. We did what-ifs. We talked about scenarios. We talked about treatments. We blamed each other. We blamed ourselves. We blamed the world. We cried some more.

Then Little bear woke up. I just held him and cried for another ten or fifteen minutes. We tried reading with him and the problems were so obvious that we would have to be blind to ignore them.

Little bear is autistic.

He isn’t untreatable. He isn’t suffering in his surroundings. He’s just trapped in his mind more often than not. We’re just here knocking on the door, hoping he’ll answer, even if it’s just for a few precious moments.

We put him back to sleep. He wanted his mommy and papi to be with him. It breaks my heart that my son wants me to be with him all the time, but he can never come out completely to be with me.

It just isn’t fair. But then, no disease is fair and no parent should ever have to go through this type of pain with their child.

All I want is for my son to be independent and happy. That’s all. I hope, as a mother, I can give that to him.