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.

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Look, Mommy! It’s Little Bear!

We were running around the playground playing monster. Mama Bear being chased by Little Bear and Big Bear, although Little Bear inevitably ended up behind and the chased. Lots of laughs and giggling, but then Little Bear tired of the game and decided to walk around and play alone, as he often does.

Screen Shot 2017-04-08 at 1.05.59 PM“That’s Little Bear!” I thought I heard a voice yelling.

Nah, it must be another Little Bear.

But I heard it again and again. And a mother confirming her daughter’s comments.

There was a little girl on the playground who knew Little Bear from Fancy Child Care Center. I introduced myself as his mother and talked to the child’s mother for ten or fifteen minutes. I apologized for my son’s disinterest in her daughter and let her know that he had ASD. She said she understood, although it was quite apparent from later comments that she didn’t. She revealed to me that her daughter had been one of his biting victims, although, seeing Little Bear’s delays, she didn’t seem especially upset by it. She brushed it off as, “She came home saying, ‘Little Bear was mean to me!’ and I told her that I know she’s been mean, too, and so have her friends.”

I explained about the ear tubes and their effect on his behavior. She asked who his ENT was because her daughter needed them. I gave her his name and information and she said she’d heard wonderful things about him. I told her how the fluid had affected his balance so profoundly as a baby that he didn’t walk until a week after they were placed. They were life-changing for him.

Then came the unsolicited advice and excuses, as it always does in these possible-friends situations. I expanded on his delays and she said she had read that children usually focus on one skill at a time, so maybe he was focussing on his gross motor skills rather than his speaking and social skills. She adjusted the amber bracelet on her daughter’s wrist as she explained this alternative fact mined from Google.

I didn’t want another mother to hate me and my child for his disability, so I, “oh, really?”ed while willing my eyes not to roll. Since I didn’t let them roll, I had to also try to fight back the tears that want to escape when I have to make the mother of a neurotypical child understand that my child is not neurotypical and will almost certainly never be neurotypical.

Her daughter tried to play with Little Bear. He would follow her when she ran, but he didn’t know how to interact with her. He just didn’t know what to do and it breaks my heart all over again.

But… in other news… today he said, “There you go” multiple times in socially appropriate situations. Also, he and his brother did an excellent job of taking turns playing a game on the ipad.

Waiting Game

The waiting game has begun. Little Bear did fine on his first day back to school. He was throwing toys, but he didn’t bite, pinch, or scratch anybody. I picked him up at 11:30 before naptime and he was exhausted. He slept from 12 until his brother woke him up at 3. I was really proud of his progress and held onto the hope that he’d make it through probation.

At the same time, I did still visit Special Needs Child Care Center to see what our options are. I have to admit, I almost cried more than once. Not because Little Bear is special needs, but because he was doing so well at Fancy Child Care Center and I felt like because his ear tubes fell out, they robbed him of a chance at having a normal school experience. Every time I mentioned the school’s response, my voice shook and the director would reassure me that biting is developmentally expected from even neurotypical two year olds and the school was out of line. They actually took their name and information to check if they claim to be ASD-inclusive so that licensing can investigate whether they did, in fact, make accommodations for Little Bear.

Special Needs Child Care Center is what Little Bear needs right now. I know it in my heart. I just need to get Papi Bear on board and that’s hard when he comes from another country and still doesn’t tell people what our son’s diagnosis is. I have no problem saying it… It’s completely obvious when you meet him and not saying the words doesn’t fool anyone. It just makes us look clueless.

This center is opening a new room later this month, but it’s already full. I asked to be put on the wait list. What else can I do? Cross my fingers and hope for the best.

Today was a failure. Three therapists had scheduled for this morning, so I’d cancelled his ENT follow-up since his therapy was so important. Two of them forgot they had put their Monday sessions on Thursday and the other one switched to the afternoon. I went to pick up Little Bear while she was there. She said he bit someone on the playground and he’s been doing better, but not the same as before. She’s wondering if maybe he just associates the school with bad behavior at this point. She pushed me towards home/special needs daycare. A short text conversation with his ABA therapist seemed to go in the same direction.

Now if only one of the special needs schools actually had a spot for him before August, that would be awesome.

To close out a long day, we went to Golden Corral to use my free birthday meal before it expires tomorrow. Little Bear had a meltdown when I gave him stuff he likes but doesn’t usually eat there. At one point I was getting his food and he was back at the table screaming. A stranger said to me, “Wow, that poor baby keeps screaming. I hope he’s okay.” Yeah, that’d be my kid. Thanks, though. As soon as he had a bowl of mac the size of his head, he was good to go.

What a week.

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.

Rejection

When I was a child, I was not very popular and I usually only had one close friend at a time. There was one point in my life when I had exactly one friend and I relied very heavily on her for emotional support. We did everything together in school, had sleepovers on the weekends, and occasionally played over each other’s houses. One day we were in 8th grade, sitting at the lunch table, talking like always, and she looked a little nervous. She looked away and said, “M… I think I’m going to go sit with some other friends today.” I said, “Um… okay?” And she left me there with the drawings
we were working on. She didn’t invite me to come with her. That was the first time I felt truly rejected by a person I trusted.

Little Bear started Physical Therapy in February of this year. He was an itty bitty thing, delayed in walking, delayed in crawling, delayed in everything gross-motor related. His muscle tone was low and balance has always been a challenge for him. We went to Early Intervention and they gave him 30 minutes of PT and 60 minutes of feeding therapy. His first therapist came twice and basically said, “Oh, he’s doing great. We’re going to put him on a maintenance schedule.” Her maintenance schedule was coming once a month. He did not improve in that time, although her cheery demeanor made me think he was almost normal.

By April, she was already dodging my calls and cancelling sessions. I called up my coordinator and she was livid that she had changed his therapy hours, let alone decided he was “cured.” She was quickly replaced and the new therapist was wonderful. It was the first time we’d been left so suddenly, so the sting was forgotten once our excellent new therapist started with our little bear.

July rolled around and the events of this blog occurred. Little Bear received his diagnosis and we began the journey into therapist land. We received an agency recommendation from a friend whose toddler had severe delays related to being a micropreemie and spending two years with breathing help. We knew any recommendation from her would have to be the best of the best.The OT was excellent. From the very first day, Little Bear was interested in her and loved being in her company. His second PT was equally enjoyable and suddenly we had about ten hours of therapy a week, making Little Bear’s progress grow in leaps and bounds. As parents, we were so proud of his progress and were beginning to see a light at the end of this dark, endless tunnel.

October rolled around and the PT told us that she was going to begin sending her PTA to do Little Bear’s therapy and she’d come and do progress checks. We were fine with it, since all of our therapists up until that point had been excellent and we felt secure that the PTA would be the same. We planned a Saturday visit after a weather emergency in the area cancelled our first appointment.

The PTA came to our house wearing ill-fitting scrubs and shoes that were meant to be regular shoes, but she had stomped down into flip-flops. Her hair wasn’t completely combed and she gave me a feeling that made me uncomfortable with her around my child. Papi Bear was also there and he raised an eyebrow when she came in. Papi Bear goes on first impressions and I knew this woman wo
uld have to be a brilliant therapist in order for him to allow her to come back to our home.

She was not a brilliant therapist. She essentially just chased Little Bear around for 60 minutes, repeating over and over again how cute he was, and at one point put him in her lap and kissed him. That was the last straw for us. When we closed the door behind her, my husband literally said, “She is never coming near our son again.”

We told the agency we were not happy with her and we’d like a different PTA. The PT responded that she was off for the Jewish holidays, but she’d take Little Bear back on as soon as she was back and she’d find a suitable PTA as a replacement. Two weeks passed… And by two weeks, I mean two weeks after Rosh Hashanah had ended. We received no update and no new schedule. I called up the owner and asked when we would be starting again. She called the PT and she said she didn’t have time to take Teddy on and she was dropping him. We were devastated. Two hours a week of therapy gone. The company told us they would find someone else, but here we are two months later without a replacement. I’ve started looking on my own at this point.
We continued on their wait list for an SLP. We finally got the call in November. She came on a Saturday morning and seemed very friendly and professional. We went into Little Bear’s room and I sent Papi Bear and Brother Bear to get lunch so there would be no distractions. Little Bear is never in the mood to be evaluated, but he was even less so that morning. He wouldn’t do anything she said and he kept biting me. She said she understood – it was his first time meeting her and he was understandably distracted. He was not happy and not cooperative. He just wanted to play peekaboo on the bed and roll his trucks around. His interest in her test was nil.

After she finished the evaluation, she told me her availability and it worked perfectly with ours, so I was very happy to hear it. She shook my hand and said she looked forward to planning our sessions soon. She would not answer any questions about where she saw him developmentally. I closed the door expecting her to call me within a few days to get started.
She never called.

The agency called more than 2 weeks later and said she would not be taking Little Bear on because he was “aggressive.” She was not comfortable woscreen-shot-2016-12-02-at-8-11-29-pmrking with a child who scratches, bites, and cries when frustrated. My immediate response was, “Then why on earth would she even bother to waste my time and money evaluating my autistic toddler?” A neurotypical toddler bites, scratches, and cries when frustrated, so I would imagine a “professional” would expect a child with an ASD diagnosis to have these traits as well. On top her label, this chart shows where she ranked my little bear. 15 months old. My Little Bear has a vocabulary of around 100-150 words, even though he’s not a big talker. He used a three word sentence in front her repeatedly (I see you) and he knew all his colors, shapes, numbers, and letters with her.

The other rejections bothered me, but this one broke me. My son was labeled aggressive. My son was labeled as being half of his developmental age. Were his other therapists lying to me? The agency told me she had spoken with his OT before taking this decision, so I assumed they may be. I showed the evaluation to every therapist he has and they all disagreed completely with what it said. It made me feel a bit better, but now I just felt my child was the victim of discrimination rather than having been misdiagnosed. I made sure her agency knew I felt this was a very discriminatory practice. As his ABA therapist said, “Any therapist who takes on a child with ASD should expect to be bit, scratched, spit on, and screamed at. It comes with the territory.”

Little Bear has also been in a new daycare since late August. He loves it there and we love do, too. It’s more money than we’d like to spend, but we think his socialization and education are worth the investment. He’s in the 2-2.5 year old room with 20 other kids and 3 teachers. He seems happy there.

Over the past month, there have been a number of biting incidents. We’ve realized that Little Bear knows that biting gets attention and he’s been taking full advantage. We’ve attempted to address it with cheweys and other actions, but nothing has worked so far. Usually he comes home with a note saying he’s bit a child at least one of the three days a week he goes to school.

On Wednesday they informed us that they would be putting him on probation. He has one week to stop or he’s going to be kicked out of the school. They told this to Papi Bear – originally saying that would be his final week, but Papi Bear was able to negotiate one last try. The owner claims 4 families have already left because of him. I don’t know how much I   believe that, though. It’s a 2 year old classroom and unless he’s biting one child over and over again – which they said he isn’t – then I don’t understand what parent in their right mind would pull their child from an excellent school based on one or two bites. Both of my children have been bitten in school and my thought is, “Well, they’re in a room full of  2 year olds and 2 year olds bite.”

Little Bear being threatened to be thrown out really broke me emotionally. I cried buckets when Papi Bear told me. I want Little Bear to stay there, but I don’t want to be in a perpetual state of fear that he’ll be expelled. I sat and thought on it a long time. His OT recommended special daycares for ASD children. One is 30 minutes away going in the same direction as traffic. The other is $900 a month for 3 days a week plus a $600 registration/supplies fee. Neither is within our means. Today his ABA therapist and I came up with a possible solution. Once he has been added to our private insurance, we’ll start him on 20-30 hours of ABA a week. We’re going to ask the school to put him back on the wait list to give him a few months to work on his problems. When he goes back the ABA therapist will be with him in the classroom and prevent him from biting. We’ll also start working with picture cards for him and see how he does with them.

I feel confident that he will improve. We just need to get the right team together that believes in him.