The stages of grief

I’ve been in the acceptance phase of Little Bear’s diagnosis for a long time now. I spent weeks crying, blasting my self-soothing music, crying, “Why my son? Why my baby?” at absolutely no one. I mourned his differences as if I had lost a child. I did lose a child. But in losing the child I imagined he was, I began to meet, love, and adore the child he is.

This morning we started our homeschool sessions. I think everything went well except for table time. We definitely need to work on table time. His ABA therapist came at ten and he did a wonderful job reading books with her and taking breaks before transitioning back to his assigned activities. She gave me ideas on how to organize his day and get him to do what he needed to do. When she left, I felt very positive about his future. He knew at least two words on every page of the Dr. Seuss ABC book, he named my sister, my mother, and my mother in law and he asked for food every time he wanted it. To me, it was a very successful day.

I filled out his transition papers for preschool. I requested a special needs school with complete knowledge and acceptance that this is what my son needs. It was a good day.

My husband has also gone through stages, but today was not a good day for him. Little Bear was rolling his head back, not answering to his name, and being generally disinterested in anything my husband said or did with him. On Mondays and Wednesdays I teach at night, so I wasn’t there to help get him back on track or figure out why he was derailed at dinner/bedtime.

I came home late from work. I had papers to grade and tests to write and I always work more efficiently from my office or a classroom compared to my home. I came in and my husband was on the couch, classical music playing, feeling very down. He had been reading about ASD and was full of questions, the biggest one being: Why our son? Why our family?

He broke my heart more than once during the conversation, although I didn’t tell him. The first time was when he said he didn’t want to have any more children because of the risk that another one could have ASD. I very much want a third child and Little Bear isn’t confirmed ASD yet. He has ASD-like symptoms, but his neurologist is heavily leaning towards delayed myelination. Since delayed myelination isn’t genetic, I see no reason not to have a third child. I want a third child. I very much want to have a third child in the next year.

As he kept saying what pre-occupies him and what scares him and what his fears about the future were, I tried to remind him repeatedly that our little bear is not a lost cause. Looking at where he should be cognitively, he hits every single milestone except following two-step directions. When looking at what a 3 year old does cognitively, he does everything except turning a doorknob and playing make believe. His delays are purely linguistic and social in nature. I have no doubt Little Bear will eventually mainstream once his language skills take off. How easy school will be for him is another question. My husband doesn’t seem to share those feelings. He fears Little Bear will be in a home and need constant care for life. I just don’t see that happening. His language was at an 11 month level 6 months ago. He tested at 18 months two months ago and he has gained an avalanche of words and phrases since then. He’s potty training on schedule like a neurotypical 2 year old. In other words, he’s making progress.

That wasn’t the moment that broke me, though. I asked him if he’d rather an autistic Little Bear or no Little Bear. The obvious response should be, “Autistic Little Bear.” His response was, “Please don’t ask me that.” My heart broke in that moment. My heart shattered into a thousand pieces because, while I’d love Little Bear to be able to walk through this world as comfortable as possible, the idea of this world moving on without him is a possibility I would never want to consider.

Then came the argument of secrecy. My husband does not like to tell people Little Bear is autistic. I tell people all the time. I really don’t see it as a big deal. I tell family. I tell strangers. I tell anyone that wonders why my 2.5 year old acts like an 18 month old. I think it’s better to be honest and have them treat him with kindness and empathy than have them think we’re awful parents. My husband has not told the vast majority of his family. He says, “I don’t see why they need to know. It’s private.” To me “private” means “embarrassing.” His family is “private” about anything and everything that can cause discomfort. I am not. This is a continual collision point in our marriage and I see it continuing to be so as we move forward with Little Bear’s treatment.

So now we’ve gone from having a venting conversation to not talking because I’m too public about Little Bear’s diagnosis. And that, too, breaks my heart.

Advertisements

Ear Tubes

Little Bear got his shiny new ear tubes put in yesterday morning. We were up bright and early, before the sun, and before Little Bear knew what hit him. We got to the hospital, went through registration and hung out in the pre-op room for a good hour, watching cartoons, playing on the ipad, and taking trips around the floor in their wagon. He started to get antsy towards the end – mainly because he realized I had a muffin tucked away in my purse, but luckily the CRNA came in with something to calm him down. When he was starting to feel the effects, they pulled out a phone, put on Baby Shark for him, and started to wheel him away. He was halfway down the hall before he realized I wasn’t with him.

The surgery itself was about 30 minutes from when they took him in to when they called me to recovery. Little Bear licked a popsicle, drank a cup of juice, and waited to be cleared. Little Bear was increasingly insistent that he get up and move, but he was still really woozy from the anesthesia. They said we could leave without seeing the doctor and that I could call later on for any information that wasn’t on the papers. This wasn’t our first rodeo, so I wasn’t too concerned.

When we got home, the improvement was immediate. Little Bear was listening. He was babbling. He was saying words. He still was far from where he was before the tubes fell out, but there was definite improvement. I put him down for a nap and when it became clear that he wasn’t going to take one, I went in and he said, “Hiiiii Mama. Hiiiii.” He’s never done that before. Usually he just says bye bye, but socially too late. Seeing him give  a social greeting at the correct moment, made me feel wonderful. He said peepee and caca when he was practicing on the potty. He followed simple directions again. I started to get hopeful.

Then I talked to Papi Bear, who had spent his morning in a meeting with Fancy Religious Child Care Center. He’s on probation for a week, starting on Wednesday. Papi Bear and I had already decided that we’d pull him after next week as it is, but this confirmed our feelings. Apparently Little Bear was biting his teacher and it hadn’t been reported to us previously. They suggested we look at special needs schools.
I think we’ve arrived to the point where that’s where we’re headed.

Papi Bear and I had a long conversation about it last night. He’s afraid to put Little Bear into a school where kids may be behind him. I had to make him realize that Little Bear is behind. Almost a full year at this point. He wanted to make comparisons with his older brother, who has an IEP right now at age 4. I showed him videos of Big Bear when he was 2.5. That’s when it hit him. That’s when he realized our son is severely delayed. At this age, Big Bear wasn’t saying full sentences, but we have one where we went to the zoo, and he pulls my husband over to the camels and says, “Mira! Camel on the ceiling! C C C!” Little Bear occasionally pulls us towards things, but not with the same eagerness and awe that Big Bear did at the same age.

Little Bear has improved since his tubes went in. He has only bitten me when he’s cranky from being hungry or just waking up. He’s still hitting. He actually pounded his brother over the head repeatedly with a small plastic baby ball today because his brother took his soccer ball. Of course this happened in the middle of a store. That I was doing a mystery shop at. Because that’s just how it goes when you’re the mom of two toddlers, one of them special needs.

Little Bear has been speaking more, singing again, daring to say new words, and dancing along with all his favorite videos on PinkFong. He speaks louder and more clearly. When I repeat one of his approximations in the correct form, he tries to correct himself. It’s an improvement. It’s a step towards where he was a month ago.

At the same time, I’m not sure how to handle school. He’s on probation already. They suggested trying maybe just the mornings for now, but he’s in school mainly because I’m teaching a night class on Mondays and Wednesdays until the first week of May. After that, I can pick him up without any problem and have him home before nap time.

I called every special needs school in the area today. None of them have space for him. One has a long shot space for him in the third week of April. They’re opening a class in his age group, but it’s already fully pre-registereScreen Shot 2017-04-04 at 10.43.05 PMd. He’s on the wait list. If you’re the wishing on a star type, please ask the stars to give him an extra push of luck to get in. I’m touring the school tomorrow and preparing for the emotional rollercoaster of acceptance that will come along with it.

Papi Bear and I have to decide tonight whether he’s going back to school tomorrow. He’s done so well the past two days. I see improvement and I’m absolutely terrified that it will go down the drain if we send him back to school. The special needs schools are not a problem, since he’ll almost certainly transition to one in August anyway.

We have a long discussion ahead of us tonight.

Little Bear… I hope whatever we choose is the best option for you. Always know we’re doing our best to give you the best possible outcome in life. We love you.

Transitions

If Little Bear could stay in one area and do his thing and then move to another area of his choosing at a time of his choosing, he would be the happiest little bear in the world. However, the world – and, more specifically, school – does not work that way. Little Bear struggled and dealt with it at Fancy Child Care Center and was starting to show huge improvements in his socialization and participation. He went from a year behind to about 6 months behind. He’s been at Fancy Religious Child Care Center for two weeks now and he has tanked.

We don’t blame the school or the teachers – not in the least. They’ve been nothing but wonderful to us and to him. They keep in close contact through messenger and send us daily pictures and videos. It’s really a phenomenal school that we’re very excited to send our older son to over the summer. However. HOWEVER. Little Bear… not impressed. At all.

He throws toys, snatches them from other children, refuses to participate, and doesn’t want to play with other kids. He’s basically just mean. He’s even been less cooperative with his therapists since leaving Fancy Child Care Center. He’s begun to bite and scratch more often, too. Even at home, he bites me at least once a day in sensory-seeking or attention-seeking ways.

The cause… well… we’re not sure. It could very well be the ear tubes falling out. I can’t imagine how it must feel to be dizzy and hear everything like you’re underwater. And to combine that feeling with a new school where you don’t know anyone and are not familiar with the routine… That’s difficult. I know he’s struggling. I see him struggling. Before I’d always take him every day we paid for, even if I wasn’t working. I knew he’d get the benefit of circle time and playground interaction. Now, I keep him home and we go to the park together instead. Every day I worry about getting a message about him biting another kid or snatching toys or just generally misbehaving.

Papi Bear and I had a long talk about it last night. It came down to this: We put Little Bear into school for socialization. He is not socializing. He actively avoids other children as much as possible. We don’t know if it’s him who is regressing or if it’s the transition that’s tough on him or if it’s the hearing issues that are making him irritable. Our final decision is that we’re giving him two weeks post-op to improve. After two weeks, we’ll meet with the director, the school’s counselor, and one of his therapists and decide if there’s been improvement and, if so, what can be done to help him along. If there isn’t improvement, we will pull him from the school and I will change my work schedule from 830-5 to 1030-7/1130-8 and begin to homeschool him in the mornings and schedule his OT and SLP in the afternoons while I’m working.

We don’t think Little Bear has regressed into a closed-off state. He’s not making as much eye contact, but when you get up in his face and start sticking your tongue out or playing with him, he’s back to normal. When he’s in the dark, he’s actually really playful. Every night this week we’ve had to go into the boys’ bedroom and yell at them to get to bed because they’re both in Little Bear’s bed, playing, tickling, and laughing. We’ve seen his little personality come out. We know he’s a social kid, albeit a bit awkward, but so were (are) both of his parents. We just need to get him in a situation where he’s getting the attention he needs in order to thrive.

And that’s where we are. We’re at a point where Little Bear will take the lead and show us what he needs. If he needs Mama Bear to make a homeschool for him for a few months, so be it. If he shows us that it was completely the tubes and he’s back on track once they’re in place, then we’ll stay in Fancy Religious Child Care Center. Whatever is happening, we’re very glad that his school has been extremely supportive and not accusatory towards us. That goes a long way when your child has special needs.

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.