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.

Advertisements

Today

some days are harder than others.

other days are impossible.

the seemingly impossible possibility that little bear will not have a normal life shatters my heart.

Today it hit me harder than usual and I cried for the first time in months. Luckily the lights were out so papi bear couldn’t see my tears.

When autism is enviable

Two years ago, shortly after Little Bear was born, I became active in an online group for evidence-based birth information. I started chatting with a girl that was living in the country my best friend was born in and who had given birth to her first son in another country in the same region. Since she was living in Latin America and I was married to a man from Latin America, we had common interests and became occasional chat buddies.

When she became pregnant with her second child, our conversations moved towards sewing. She and I had both recently begun classes and we both used cloth diapers with our children. She was tight on money, so I sent her a box of cloth wipes that I no longer had a need for. She showed me her progress on diapers she was making for her second little boy, proud of the improvement she was making on each one.

In August of last year, our lives and our friendship took a dramatic turn as I dealt with the diagnosis of Little Bear’s autism and she dealt with her son being born with severe illness that was not immediately defined. At first they thought Down’s Syndrome, then they thought it was a heart defect. The newborn was airlifted to a larger hospital and mom was left with no answers and a thousand questions. I was similarly flailing for answers with Little Bear’s diagnosis. She was one of my anchors and I’d like to think I was one of hers. It was like we were both swimming in a sea of uncertainty and we were grabbing towards each other’s hands, hoping neither of us drowned.

Then, in November, we both received answers. Little Bear might not be autistic. He might actually have delayed myelination and outgrow many of his symptoms. We would repeat tests in a year to see. It was like a lifesaver of hope had been thrown to us and we saw so much improvement from his therapies, that we suddenly felt like we were coasting by.

Screen Shot 2017-03-16 at 11.52.03 PMMy friend also received the answers she waiting for, but it was no life preserver. No, she was thrown a pair of cement shoes: ARPKD. Her son had a genetic defect that had no cure. He would not live to adulthood. Possibly not even past early childhood, given the symptoms that were already evident at birth. Her world crumbled around her. Her boys’ father was no longer in the picture. Her baby was going to die. She felt that she was leaving her older son with nothing more than an absent father and a dead brother. My heart broke in two for her.

She took her older son to be tested last week. I waited anxiously for the results. I was certain he was fine. He was already four and asymptomatic. There was a 75% chance that he was carrying healthy kidneys and healthy genes. She texted me on Friday night with the results. Her older son was also affected. Both of her children would die before they were 21.

My heart broke into a thousand pieces for this friend. I’ve never even heard her voice, but I sat in my car and cried buckets for a woman I’ve only chatted with. I cried for a mother who would lose her entire world in one decade. I cried because I want to continue to hold her hand through this, but I feel that she may end up resenting me and my “problems” with Little Bear. My Little Bear who will one day be a Big Bear and have a completely normal life expectancy. We were two mothers navigating the waves of emotion that accompany the unknown medical diagnoses of our children and one of us was left with a non-neurotypical child and the other was left with two terminally ill children.

The guilt. I feel so much guilt. I have no reason to feel this guilt, but yet I feel it because I don’t think it’s fair at all for a mother like her to have to suffer through this. I feel it because I’m still upset about Little Bear, but Little Bear is growing bigger and stronger while her boys will eventually grow weaker and lose their kidneys. It’s not a fair friendship. I won the freaking lottery of problems compared to her. The goddamn lottery.

I put her in touch with another internet friend who has a son with a mitochondrial disorder. Her son’s life expectancy is similar to the poor mother who will lose her two boys. She has also already lost a child due to a surrogate who didn’t have a c-section early enough when there was a labor complication. She has become the new hand to hold for my online friend. She knows the drill. She also guides me on how to talk to this friend so that she doesn’t feel like I’m babying her or ignoring her.

Autism is a difficult disorder to deal with. Trying to peak into my son’s world and mind can drive me to tears at times. However, there are more and more moments when I feel like he’s left the window open – maybe even the side door – and I can see inside and really know him for a few moments before it closes again. I feel like there’s hope that one day he might invite me in for a conversation and we will know each other. This will continue until I depart this earth before him, as it should always be.

My friend has two children who are neurotypical in every sense of the word. They are happy, active, “normal” children with not a worry in the world. Happy, active, neurotypical children who will have to come to terms with their own mortality before they even begin to live.

I feel so guilty that I lucked out and got an autistic son.

Fancy Child Care Center

Fancy Child Care Center* kicked Little Bear out for biting.

Fancy Child Care Center put him on a two week probation for biting in December of 2016.

Little Bear did not bite from the day the probation started until the first week of March.

Fancy Child Care Center’s owner thinks my son needs a “special school” and “one-on-one attention.”

Little Bear’s therapists and neurologist thinks he needs a social atmosphere and that he is thriving with other kids.

Fancy Child Care Center told me that the owner’s 23 years of experience was more valid than that of his ABA, OT, PT, SLP, and Neurologist.

Fancy Child Care Center said Little Bear bit a child on Thursday at 10:15. Little Bear had both his ABA therapist and his new SLP there for an evaluation at 10:00.

Fancy Child Care Center has been reported to licensing for not providing me with a report when my child was bitten. They will most likely be cited because they didn’t ask me to sign any of his incident reports since November.

Fancy Child Care Center did not feed my son adequately, which led to his behaviors.

Fancy Child Care Center is classist and didn’t want a non-perfect child ruining its perfect reputation.

Fancy Child Care Center will not define my son.

Fancy Child Care Center will not define me as a mother.

Fancy Child Care Center will make me smarter about who I trust my son with in the future.

Fancy Child Care Center can kiss my ass.

 

*not the real name.

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.

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.