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.

Advertisements

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.

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!

Cultural Differences

Papi Bear and I are from different countries. I’m American and he’s South American. We have much in common, but our upbringings were very different and our views on childrearing often butt heads when it comes to topics such as discipline and Little Bear’s autism treatment.Screen Shot 2016-08-22 at 11.06.53 PM

Papi Bear accepts the diagnosis when we’re with the therapists and doctors. He is more eager to say his response to speech is severely deficient than I am. He is less likely to explain symptoms away than I am. He is the one who really pushed for the neuro consult to begin with. For all who see Little Bear in a clinical setting, Papi Bear is the one who accepts this reality most firmly.

Me? I accept the reality of my son having autism. I can now say it without crying. I can go to his appointments without having a panic attack when they say “autistic” and point out his deficits. I am, however, his primary caregiver and I do see differences between where he was when we started a month ago and where he is today. I also see differences between how he is when we’re alone, how he is with both parents, how he is with his brother, and how he is with therapists. He may be babbling nonstop all morning with me, but when he’s being evaluated or working in therapy, maybe one or two words will come out. He is also much more verbal with me than he is with my husband. When I lay in bed with him, he’ll touch every part of my face and whisper, “nariz…. nose…. ojos… eyes…boca… mouth,” and then wait for me to lay on my stomach and then he’ll climb on my back and fall asleep. I know a different Little Bear than the rest of the world.

Today my husband arrived home from a weekend trip to his country. We were discussing Little Bear’s progress over the past few days. He said he definitely agrees with me that Little Bear does better in the morning than he does in the afternoon/evening and that he is understanding more directions and commands. He was also very impressed that he walked across the entire house to bring him an empty apple sauce pouch and say, “Gracias,” when he gave it to him.

We discussed where we see deficits the most. I told him I see some social deficits for sure and also some minor sensory ones. He asked what I meant. I told him I notice that when he leaves his very-dark room after nap and walks into the living room, which is very bright, he will sometimes put his arm above his eyes for a few minutes until his eyes adjust to the difference in light. I also mentioned our recent trip to Tusker House at Disney World for a character meal. Both of the boys were tired, Teddy was just recovering from roseola, and the combined stress of not being 100% with high noise levels and lots of people was just too much for him to take. He freaked out and wouldn’t eat a thing. It was a very stressful experience for all of us and he pretty much had to eat in our arms in the buffet area because he would cry every time we were in the room with the noise and people.

I told my husband I had asked some moms of autistic children what they do when they go to Disney and their kids have sensory overload. One woman said, “My son wears noise-cancelling headphones and has the added bonus that he can listen to the same song over and over without bothering the people around him.” I thought that was a wonderful idea and so did all of my friends who work with autistic children or have one of their own.

My husband’s response was, “No. That’s a horrible idea. He has to learn how to deal with it. He’s not going to wear noise-cancelling headphones when he’s 20.”

To which I responded, “Maybe he will. We don’t know. When he’s 20, he’ll most likely have other coping mechanisms. For now, he’s 2 and he doesn’t know how to cope with the world around him. I want him to be comfortable in public.”

Husband doubled down. “No. He is not going to wear headphones. Just because you read something on the internet doesn’t mean it’s a good idea. We don’t even know if he’s autistic yet. They’re still testing. It still might be something else. But no matter what, we need him to learn how to be as normal as possible. He needs to figure out how to deal with it. He’s not wearing headphones ever.”

At that point I said, “But that’s the point. He’s NOT normal. He needs accommodations because he’s NOT normal. He’s autistic. And he’s two years old. He doesn’t know any other way of coping at this age. He is not normal and we can’t treat him like he is to the detriment of his mental health.”

And that’s when I left the room and silently cried alone. My son is autistic and he is disabled. He needs accommodations that make him comfortable. Would we deny a paraplegic child a wheelchair in an attempt to have him appear normal? Would we deny a deaf child a seeing eye dog in an effort to appear normal? A hard of hearing child a hearing aid? A nearsighted child glasses? Our child is no different. His father needs to understand his disability and realize that this isn’t a small learning disability that can be overcome with extra tutoring or no time limits for tests. It is something he will deal with the for rest of his life. I refuse to make my child suffer anxiety and mental anguish in the name of appearing “normal.” Besides, we’re in 2016. It’s pretty normal to wear headphones at all times in public anyway. Nobody would know he was using it as a coping mechanism. They’d just assume he’s listening to the Wiggles.

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.

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.