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.

Advertisements

Penciling in Life

Last week Little Bear was approved for therapy through our private insurance to add on to his Early Intervention therapy. At the moment, he has 9.5 hours a week. We’re still screen-shot-2016-09-18-at-11-25-44-pmwaiting on an eval for private speech therapy, possible OT through Early Intervention, and a possible doubling of PT through Early Intervention. All in all, he may end up with 15-18 hours a week by the time we finish scheduling everything.

Little Bear is doing extraordinarily well in his new school and every day we see him more and more eager to go to class. He cried for 15 minutes after we left him on the first day, but Papi Bear said he just goes over to his seat and sits down with his breakfast when he leaves him now. His new PT told me she observed him for 15 minutes before she started her therapy with him on his first day on Thursday. She said he is very attached to the main teacher in the classroom and he likes to hold her pants and sit in her lap during circle time. The same teacher has told me he’s the sweetest little boy ever (except for the pinching) and that she adores him, so I’m glad he’s found a teacher at school that he can find comfort in while he’s away from Mama and Papi. We’re also thrilled to walk in at the end of the day and find him running around on the playground, rather than in a classroom or watching TV.

Today was a special day. A milestone day. Today was the day Little Bear picked up a remote, held it to his ear, and said, “Hewwo? Hewwo?” And then gave it to Mama to listen. Today was the day Little Bear truly played pretend and his Mama Bear’s fears lowered down one more notch. He can play pretend. My Little Bear can play pretend!!

The fears are still there. We still worry about the future. We still worry about the present and about the things we may have done to cause his disorder. We don’t, however, feel the terror that we felt back in July. Our terror has been replaced with hope: the hope that Little Bear will have the capacity to live a productive life in society and function as someone who is simply “different.” We’re okay with him being “different.” We’re both “different” ourselves. We just don’t want him to ever feel like he’s a burden to us or his brother. That is what we want for our baby boy.

And every day that goes by fills us with more relief that that will not be his case. We’ve passed the 3 week mark since Little Bear’s urine sample was given. The geneticist said that if he had something concerning like Fragile X, we would be called in earlier than our November 1 follow-up and the tests generally take 2 weeks to get back. I don’t want to say we’re in the clear for serious genetic conditions, but the stress has definitely gone down now that we’re heading towards a month since the second test was turned in.

For now, we’re just trying to pencil in life between therapy. Deep breaths and away we go towards the prize: our son reaching his full potential and finding coping mechanisms that work for him.

Early Intervention

As Little Bear’s progress continues, our fears have slowly gone from high flame to a simmer. We’ve seen the neurologist, the geneticist, three physical therapists, two occupational therapists, a speech pathologist, and we have appointments with two ABA specialists at the end of the month. At first each new evaluation was a terrifying prospect that both Papi Bear and myself feared the night before. We knew our hopes and dreams for Little Bear would die a tiny bit more as his diagnosis was confirmed yet again.

Yet now, a month and a half after his initial visit, our fears have reduced to such a level that we’re almost happy to see new evaluations. Each evaluation he has seems to be less extreme than the previous one, showing us the obvious success that early intervention has had on our son.Screen Shot 2016-09-07 at 12.03.36 AM.png

For example, when we initially filled out his survey, we said he rarely made eye contact. This is no longer true. Little Bear doesn’t make normal eye contact by any stretch of the imagination, but he comes up to us and looks in our eyes spontaneously, always looks at us  when we’re playing with him, and he’s even begun to look for approval after completing a task. These are big milestones to our family and we’re very proud that he’s been able to make significant progress after just a few weeks of therapy and work with his parents.

His vocabulary upon diagnosis was under two dozen words, but is at least twice that now and every day he seems to add something new. He knows his shapes, his letters, and his numbers now. He can name three body parts, a few animals, and he makes his likes and dislikes known through the word “no.” This is absolutely thrilling to us as parents, since just a few short weeks ago all he would say regularly was “leche,” “ball,” and “bubble.” Now he’s actually communicating with us.

Early Intervention is so commonly ignored by parents for whatever reason. I, personally, am a huge fan of taking advantage of it. It changed the outcomes for both of my boys and has put them on a direct path to success. I urge everyone who has even the slightest fear about their children being behind in anything to have their child evaluated. There is absolutely nothing to lose and an entire world of good that can be gained.

New School!

Little Bear started at his fancy new school that costs a lot more than his not-so-fancy previous school. While we loved the one year old teacher, we always despised the two year old teacher and with a special needs kid and the good three year old teacher gone, the decision was made for us. We were done; we were ready to move on.

Little Bear’s new school is a breath of fresh air. The reports are more detailed, the teachers are more professional, the facilities are incredibly well-maintained. Not to say his old school was badly maintained – it was just an older building and it was showing its age, while this one is a new building and also shows its age. The playground at this school looks like a brand new city playground and impressed Big Bear so much that he labeled it “No Little Bear cole. Big Bear cole.”

His teacher said he doesn’t specifically play with other children, but he plays near them and rarely goes off into a corner on his own to do something. She said it seems that he likes being around others, which is very different from how he was perceived by his previous teachers. As his parents, we were thrilled to hear that he’s no longer avoiding contact with other children. Honestly, that’s all we want for him from this school: socialization. And we may be biased, but we both think we’re already seeing him improve a little bit, even though it’s only been two days. When we pick him up, he’s usually babbling to himself with new words, rather than quietly playing alone and when we’re at home, he’s usually in a much better mood for dinner than he was when he was at the other school. We decided we’re going to wait and ask his PT what she thinks in another week or two, since she’s seen him at both schools.

Little Bear has been talking a lot more lately, which has been easing a lot of the anxiety Papi Bear and I have felt. He calls Papi Bear “beh-beh” consistently and he’s started to say “Mama” every once in a while. He always asks for leche and agua by name, his favorite toys have names, and he tries to label things he doesn’t have a word for yet. For example, when we did his 2 year old photos last week, he called the balloons “bubbles.” Before he would have just grabbed at them and made no attempt to associate a word or sound with the object.

We’re going to see about changing his SLP soon. Although we love her as a person, but we don’t feel he’s getting anything out of the sessions. All we do is sit there and do puzzles and blow bubbles, which does not make for productive therapy. He learned the word bubble on his first day, which impressed us since his speech had completely stalled. He has yet to repeat that early success, though. His PT has taught him more communication skills than his SLP and I have to go to the hospital for the SLP while the PT comes directly to the house. The PT gets down on the floor and offers him things and makes him say “mas” or “more” or “mine” before she’ll give it to him, even if he gets uncomfortable with it. She does a deep massage on his arms and legs to calm him before she puts stress on him and she does it again once he’s done. Even though she doesn’t speak Spanish fluently, she’s made efforts to learn the Spanish children’s song that we use to calm him down. He trusts her, he enjoys her, and she challenges him. I wish we could have a half hour with her every day, rather than once a week, but unfortunately she doesn’t accept our insurance so we only get what’s provided through Early Intervention.

We have a few more evaluations coming up this week. OT is on Thursday and then he has another PT eval on Friday through our insurance. We’re trying to get as many hours as we can this year so he is prepared for regular public school preschool next year. Everyone has told us they see promise in him, so we’re still holding out hope that he can integrate and be in the classroom next to his brother. We’re keeping our fingers, toes, and everything else crossed. We’re hoping this new school is just what he needs to help him learn how to be with other kids.

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.