parenting – That ASD Mom

The Struggles Continue

The struggles continue. We have started them on meds for ADHD and now I have to find some form that both will take for other meds; melatonin and iron. Iron is for the girl as she doesn’t eat meat (or fruit, or veggies) and the doc worries that she may be anemic. Not a good thing for anyone, but especially with her heart condition.

Melatonin is for both, but mostly for the boy who has anxiety issues and is back out of bed at least 3x a week. He will come down and say that he is scared and the reasons range from a video he saw, to worrying about death and dying (what will happen to him if I die, worrying about the aging grandparents…) and the new one is worrying about his sister as she doesn’t finish all of her food some days.

*Sigh. Let mommy worry about that, and you worry about getting enough sleep so that you aren’t grumpy or sleepy at school tomorrow … is usually my response.

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Our province is also going through a period of rain storms that have caused flooding in the main farming area of our province. Many have been forced from their homes and need to rebuild only to have more rains come. Stores are empty in areas due to stocking and access issues. Gas is rationed. Borders issues with the States. The list goes on.

In the midst of this, I have actually put up the Christmas decor, which is a significant feat for me as I usually don’t like it, don’t want anything to do with it, … I tolerate it and the commercialization of the season. I guess this year I needed something to look for , to hope with. Despite my child’s greed about presents, we have determined that our kids have too much stuff and there will not be an abundance of gifts this year from us or Santa. We figure there is enough from grandparents, etc to add to the piles.

Hubby has asked if he needs to buy something for me or if he “has already done this” *wink (meaning have I bought something and told him that was what he got me). I told him, you got me a new TV so there is that. I was getting annoyed with squinting to read the subtitles from the other end of the room, so we got a bigger screen and it is a smart TV, so it now has only 1 remote instead of 2, and more apps on the TV whereas we had the Firestick (amazon) in the basement where I hardly went. I have discovered shows that I watched in the 80s or have wanted to see but didn’t have the time or platform for it.

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There has also been protests at the BC legislature about changes to the funding for special needs. Currently most autism funding is through the BC gov’t from the Autism Funding Unit. There was an announcement about funding changes to create hubs instead of the current direct funding we currently have. AFU should be increased in amount has been a long said critique. Instead, BC has decided that in order to provide access to services for the various disabilities, diagnosed or otherwise, they will pool it all into hubs. This model has been used in Ontario and has been criticized for increasing wait times to gain access to services. My issue is that information is vague; no budget listed, no information about WHO will determine WHAT services are to be provided, or their credentials to make this determination. In trying to help the masses, I worry that they will hurt more than help. So to that end there have been protests and one will be on December 3, the International Day of Persons with Disabilities. I’m torn. I know that I should go. I also have been thinking that I should join the letter writing campaign (to my MLA) about this, but frankly I have little energy for all of this. I’m trying to put my finger on it, but it is reminding me of when I was working in healthcare and they talked about the demoralization of the staff. I think that is it, or the closest thing that I can think of to describe this feeling. The fact that I have to fight so hard for basic access to things that have been deemed essential or fact. It takes so much energy to advocate for things, and it is so far out of my comfort zone that I worry that I will make a horrible faux pas and thus screw my chances (and my twins’) for getting what services are needed.

Backing up a bit

So upon review of the background story, I apparently didn’t get too far to explain about my little warriors. “Heart warriors” seems to be a term used in the facebook groups that support patients and mostly, parents of children with cardiac issues. So after we took them home from the hospital post heart surgeries, we have continued to go to followup appointments at the local children’s hospital. M, the boy, doesn’t need to go as often as his sister, L, since he hasn’t had any corrective procedures aside from the angioplasty at 2 months.

When the children were about 15 months, we moved to a new home. We had run out of space in our 3 bedroom townhouse. They shared a room and with 2 cribs and a dresser in there, it was crowded, with barely enough room to put them down on the carpet to change their outfits. The “play area” of our living room was a 4×4 space and they were ready to move around. So we moved further away from Vancouver BC to Surrey and live in a large house at the bottom of a cul de sac.

While we were adjusting to the changes that come with a new area, separate rooms, MORE stairs, and a big playroom, they were moving from crawling to charging around and even climbing things. It was a few months after their second birthday, that it was suggested that we might need to get them assessed for OCD or Autism. I was livid! It was hard enough to deal with the twins as it was, plus I had worked in the healthcare industry for over 15 years and I knew what OCD was, and this was NOT it.

At the time, it was enough to deal with having twins and trying to get them to eat, potty train, their cardiac health status, and my inexperience in general with the whole parenting thing that contemplating that there was MORE stuff wrong with them was just not an option. I forget exactly when I finally agreed that it was worth looking into, but in the end, we got our children assessed for autism. My daughter was not non-verbal, but rather unable to express herself, to articulate as per her age level. We got the official diagnosis of ASD for my daughter when she was 4; on the first day of preschool. So I opted not to send her, but sent my son. Of course, there were signs with him as well, and his ASD diagnosis was confirmed the following summer.

I had worked in healthcare for over 15 years but this was a whole new world for me. I had to learn new terminology for not one but 2 medical conditions. I had to then learn how to navigate the support systems for getting the “proper” care for my warriors. At the time, I was also a part of a twin mom group. I had to quit as “we get it, we have twins” wasn’t cutting it for me. Yes, you have twins, but a) you aren’t me b) you don’t have high needs twins c) you have your own issues that you aren’t able to give me the support that I need

I understand why so many people turn to social media for information and support. This way you can pick the group that fits your needs and you can pick and choose the information that you want/need to read. Also you can leave a group (facebook) when you want/need to. So I turned to social media and specifically facebook to help me navigate this new world in a new province. Even though I had lived here for a decade, the “system” of support was foreign to me. I knew who to ask or where to look in the areas where I grew up, but not here.

More conversations with my kid

This morning, I was woken up by my daughter crawling into my bed, (past 7!! wow!) She climbs in and starts talking.

“Just a minute sweetie. Mommy isn’t awake enough to focus yet.” Pause. “Ok what was that?”

“When I am a teenager, I will have to get a job.”

“Ok. Yes, that might be a good idea.”

“I will have to get a job, but I don’t know what I would want to do.”

“My first job was washing dishes. Later, I worked in a fast food restaurant.”

“Yes, I could get a job in a restaurant. Washing dishes.”

I don’t remember how we got to it, but inevitably we got to her passion. “I would work as an animal rescuer. And have spy glasses that will scan to tell me where the animal is. Then I would look in a house to find the animal that we are looking for. But not that house, it has a dog. We aren’t looking for the dog.”

(Then she starts to explain her ideas of animal rescue that are based on the Diego cartoon. I have tried to explain to her that the job isn’t quite like that… that there is no scanner to find the lost animal. The conversation then went on…)

“But if a bear was caught in a trap, I would make sure to tell him that I am not going to hurt him. I have to make him my friend before I get the trap off of him.”

“You know, I have friends that work as animal rescuers. Sometimes, it is dogs, other times it is horses or snakes.”

(Nope, she then went on about needed Diego like equipment…. smh.)

It was too early in the morning for conversations about her future and me trying to find language to explain reality. Luckily, she then asked about breakfast so I sent her downstairs.

Conversations with my ASD kid

Conversations with my ASD children are interesting. My daughter will leave you scratching your head afterwards as you ponder her train of thought.

She has beautiful, long hair as I did when I was a child, but she HATES letting me brush it. It is true that I am hard on my hair and rip it out a lot rather than gently tease the tangle out. To that end, I have to comb my hair in the shower with conditioner to get tangles out of my hair and I do the same for her. As my hair is curly, I often wet it to comb, then my curls just happen. L has seen this and insists on a spray bottle for brushing her hair as well.

So we were in my bathroom trying to tame her hair when this conversation happened.

“Mommy. Am I girl or a boy?”

“You are a girl.”

“How do you know that I’m a girl?”she says, as she pulls down the front of her dress, exposing a nipple. “Because I have these?”

I pull up her neckline, and answer.

“Because you don’t have a penis. Boys have a penis and girls have a vagina. You have a vagina. But you may feel like you are a boy at times…” (I wasn’t sure where this was going and wanted to be open to the whole gender vs. sex thing if necessary.)

“Oh good. Now I just have to go find a boy that I like and he likes me and then these will grow and we will be a family. ” (um, I think this is what she said. I am hearing impaired eh?)

“Uh, yes.” I say. “When you get older, you can find a man that you love and who loves you and then we will see.”

Okay! She says. I have finished her hair now, so she leaves.

Later, I told her BI (autism tutor) who responded with “awesome!” I assume because my daughter’s train of thought is fascinating to her, and also because it means that she is thinking about these things.

Meanwhile, I dread PMS as she is moody enough as it is, and having to explain puberty to her when she gets older.

COVID19 updates – Demon child

A Little Girl Looking Mad And Furious (With images) | Teacher ...

It is horrible to say this but “demon child” resurfaced. Even though I reiterated numerous time last night, my daughter was “very mad” and acted out that I had put the timer back on the IPad. It is Tuesday, so a regular “school” day, thus the timer goes back on. A few months ago, I learned about screen downtime. It starts from 7 pm to 7 am. So in light of their resistance, I extended the time to noon. So in the mornings, there is no access to their beloved minecraft, save by password input. There is unlimited access to school related apps though.

My daughter was not happy about the return to school work mode and screamed at me like the “demon child”.

“I. AM. MAD!”

“Yes, I see that.”

“I get mad when you don’t give me what I want.”

Get used to it kid. When she first started getting mad this past year, with the yelling and screaming, and some hitting, I was actually amused. I remember reflecting that I must have been horrible to my mother and this was karma. So I wasn’t actually upset when she first said that she hated me. My BI said that when they get upset at us, that 1. it means we are doing our job. 2. don’t take it personally.

Last week, I was so done with the yelling and screaming (about school work) that there were maybe 2 times that I nearly cried. I think that if hubby wasn’t home during this quarantine, that I would have.

As for my “demon child” daughter, I’m sure that some people who know her would be shocked to meet this version/persona. I dread the teenage years or when she gets PMS.

Life with Autism

Ever have those days when you think you are finally turning the corner? Finally getting the hang of things? Life has calmed for a bit and then, autism rears its ugly head. Or maybe it is just parenthood, I don’t know, these are my first and only children.

Lately, our son has had issues at night. Specifically, bedtime. Yes, I know that every child tries to delay the inevitable, going to sleep; heck, I’m sure I had a few antics up my sleeve at that age. There are times when I can’t tell is autism and what is normal childhood issues. My son has OCD as well as autism. This manifests itself in a rigid resistance to change. (I suggested that we go on a fun trip, maybe to Disneyland. He replied no, because 1. he has to get in an airplane, 2. it would take so long to get there 3. “I don’t like costumes and I would hide behind my mom.” [This last one is a funny statement, because he was speaking to me…. about hiding behind me.] So even though his twin sister would love the experience, and try to squish the life out of all the characters, this is a trip for the wishlist.)

Often after he has been put in bed, we will hear from the top of the stairs, one of the following; “I’m scared”, “I was thinking of places that I love that we don’t go to anymore” (with tears), “I thought of something creepy”, “I thought of something scary”. His father gets more aggravated by this than I do. Our response is “what would you like us to do? it’s your brain.” He usually just wants a hug, which is fine. But then he starts to talk, and then it is 10 or 15 minutes later. Or he wants someone to come with him and rub his back. This is hard for me because of a number of things; He is my little boy (yes he is 8, but he won’t be soon.) and he will only be little once. I recall the memes about “cherishing the moments” because they will soon be gone, or is it you want them to remember you and their childhood well, and then I feel conflicted. Do I “coddle” him in this or do I draw the hard line and send him off? He has to learn to deal with this himself as I will not be around forever.

So my ABA home team says to ignore and send to bed, but the mother in me says to be gentle with him. Don’t want to scar him for life, especially given his anxieties. *sigh

These “I’m scared” or “I’m thinking of..” moments have been happening more regularly these past weeks. Is it just because, as the school principal mentioned in a meeting yesterday, that this is the time when a lot of kids unravel, or is there some other stressor that I need to look for? The fact that he has anxieties (associated with the OCD) doesn’t help. I have read in a lot of my facebook groups about some ASD children needing medications for their anxieties, to help them process, or sleep. I hope it doesn’t come to that because neither of them will barely take something for a cough, let alone a daily dose of anything.

Last week, my child was sobbing in my arms because he was afraid of becoming an adult because he didn’t want to leave our home. In fact, my birthday card from him said just that. And ONLY that. “I love you and I never want to leave our home.” I had to console him and tell him that we aren’t planning on making him leave. Some people want to leave and do so at age 18, which for him is another 10 years. I didn’t leave my parents house (FINALLY! as my father would put it, after my coming and going from schools) until I was 28 and moved here to BC where I have been ever since. So that is another 20 years. You might feel differently in 10 or 20 years, but you are welcome to stay here as long as you need.

Such big thoughts from a little man.

I measure every Grief I meet ..

I have been reading a bit since the start of the year and have finished book #3 of 4 that I picked up from the bookstore. The last book was called “The Two-Family House”, a debut novel by Lynda Cohen Loigman. I won’t do a review here but wanted to talk about a passage that I found in the book on page 183. In this scene, an older aunt is talking to a eight year old girl. (from a poem by Emily Dickinson) page61-1024px-Emily_Dickinson_Poems_-_third_series_(1896).djvu

“… I found a special poem that helped me feel better. … I don’t remember all of it, but the first part goes like this.” Aunt Faye cleared her throat and closed her eyes. “I measure every Grief I meet, with analytic eyes — I wonder if it weighs like Mine — or has an easier size.”

“I don’t understand.” (eight year old)

“It is difficult to understand, isn’t it? Of course everyone has their own ideas, but I think it means that everyone has some sadness in life. Maybe someone they love is sick or died, or maybe someone they love did not love them back. Maybe they don’t have enough money for something they really need. For me it was that I couldn’t have a baby. But for another person the grief could be something different. Something they wish they did or something they wish they didn’t do.

We always think our own grief is the worst — worse than everybody else’s. But the truth is, we never know for sure what the people around us are feeling. I have had some bad things happen, but then a lot of wonderful things happened to me too. An awful thing happened to you yesterday. But you mustn’t let it ruin the happiness that lies ahead for you, dear.”

This passage stuck with me as a reminder that as individuals, it can be hard to share what is in our head/heart. Grief is not just related to death, but also to loss. Death is hard for a lot of people to focus on because it is the final loss. Once someone is dead, there is no coming back, no replay, no next time. What we have done or said is how it is and we can’t change our relationship with that person. The impact that they made in our life is still there, but it is missing from our world now and we can’t get it back.

Grief also comes from considering the losses of life; the loss of hope, a dream, a change of plan. When one is ill, we consider all the things that we cannot do or how life has changed “from before”. Physically we are not able to do things, must change our eating habits (diabetes, heart conditions, etc), and our lifestyle must change. The same can be said of parenting. When my babies were born, it was the greatest joy. When I was told that my newborn daughter had a lifethreatening heart condition and she needed risky surgery, I was terrified. When they told me that not one, but BOTH of my twins had autism, I mourned. My grief focused on the loss of a dream. Now some parts of the parenting dream had to change. The stigma of them being “different” meant that there were/are likely some things that they will not achieve. Can they join a team and play sports? Can they become a star athlete? a president? a successful worker? I had to let some dreams die. I had to let the dream that I could go to parent groups and relax, and be an average soccer mom.

The main point of this passage was We always think our own grief is the worst — worse than everybody else’s. But the truth is, we never know for sure what the people around us are feeling. As a person, we can be self-focused, or inner focused and lose perspective. The fact that something happened a certain way has affected me this way, or the fact that something didn’t happen can affect me a different way.

When death occurs, people often don’t know what to say. When I was working in healthcare, my speciality was grief related to chronic loss. (Geriatrics, dementia, and renal diseases) I was often asked to give talks about grief. I remember being asked about what to say or do. I responded with “I’ll tell you what not to say, don’t say (platitudes. I hate the platitudes) “it was his/her time”, “they are better off now”, “they are at peace, no longer suffering from their illness”…. and especially, don’t say “I know how you feel.” Yes, your dad died and my dad died, so I know what it is like to lose a father, or yes, our children both have a heart condition, or both have autism, so we can share our experience, but I will NEVER know what is like for you, and you will never know what is it like for me. The relationship that I had with my father is likely quite different than the one that you had with yours. The impact of their life and now death will be felt differently.

The fact that we may share the experience of raising special needs children means that we understand some things that others do not, but I can still never know what it is like to be you, raising that child, and vice versa. I think that as long as we are open to sharing and hearing what the other person is telling us about their experience, that is where we can be together in the experience. That is how we support and tend to each other. When we become so wrapped up in our experience that we let it dictate our view; narrow our focus and thus shut people out, that can be a problem. The support that we reached out for will not necessarily be there because we are not able to hear the other people, to accept what they have to offer. Granted, there are times when we will not be able to “hear” what someone else has to offer, (like when the crisis first hits) but over time, this is something that we should strive for. Supprting each other in our lives but never assuming that we fully understand what it is really like for that person.

Okay. Enough preaching. I’m off to go do parenting.

Proud mama moment

My children wake me in the morning, usually before I’m ready to get out of bed, likely because they heard their father’s alarm go off at 6:30 a.m.

This morning, they both came to the bed (Thank goodness it is a king size bed!) and get in. My daughter says ‘I’m done sleeping. I’m bored of waiting.” So I told them to go downstairs but DON’T bug the cats. After freshing up, I wander downstairs to do breakfast for all us. When I walked into the kitchen, there was a step stool pushed up the to counter and the cupboard is wide open. My daughter was over by the sink smushing the cat food with a spoon into their bowls. She has watched me and “helped” enough to know what to do. I was so proud! and told her so. The fact that she did it properly and had taken the initiative. Guess that is just a reminder that the twins will be 8 soon and are capable of doing more than I give them credit for. (as the autism issues sometimes get in the way.)

#proudmama #autism proud

Summertime “fun”

Summer is upon us. And what to do with kids…

I had to plan this in advance. I booked a week of day camp a month (one for July and one for August), and the grandparents requested to have them go to their place (which involves a ferry) once each month. Somewhere in between all of that, I had to figure out ABA schedule (lax for summer) and resume the “food program” (trying new foods) and implementing a token board to regulate their Ipad usage.

For the past 4 days, I have driven them an hour into the city to a day camp run by the Canucks Autism Network. I hate driving in city traffic. I’m not bad at it, but it causes me stress.

Today, on day 5, the final day, the boy throws an epic meltdown with yelling because he didn’t want me to put sunscreen on him, …. but he did. SMH! So we were late to leave the house. On a Friday. and yet traffic was light and we got there with 5 minutes to spare.

When we first had my twins diagnosed, it was a battle with my daughter for most of the past 2 years. This year, the focus has been him. He has more rage, more behavior, and I had have less tolerance, I guess. I have had to step in a lot when my husband “deals” with our children, as his frustration comes to a head pretty quick.

In the end, behavior intervention is for all of us. Yes, it is targeted for the individuals needs of my children, but it is not just about me paying someone else to do it. It is also about training me. I’m sure that my parents had their moments. But to me, they looked like they knew what they were doing. So when my daughter told me that she hates me a few months ago, I wasn’t hurt by it. I was actually amused, as I was remembering that I said this my parents numerous times. I know that she doesn’t hate me, (even though she will emphasize it. ” I. HATE. YOU!”) but rather she hates what I am telling her.

My son is more like me than I realized. I protest going to places, but once I am there, I am fine. It depends on the social occasion. So even though it was a battle to get him to put shoes on and get in the car, he was fine once we were there. I’m sure that they will tell me what a great day they had when I go back this afternoon.