Covid19

I have never felt like a good stay at home mom.  I want to be out, doing things.  I like playdates, play groups, going to the parks.  I like my job and I like that I have “alone" time during it.  I believe me going to work makes me a better mom.  I am the Mom in the memes that were out when the restrictions first came in that made fun of Moms who didn’t want their children at home, didn’t want to “parent".  I love my child fiercely and am her biggest fan and strongest advocate, but I feel like a better Mom when we have some time apart.  I also know that she learns more at school than I can teach her. So along comes Covid19 and it changes everything.  We are all at home.  There is no play dates, no groups, no parks, no friends.  Just Mama, Daddy and Illyana at home.  All day.  Every day.  We are starting our 4th week.  I have to tell my 2 year old daily that we can’t go to the park at the end of our road because the park is closed.  It doesn’t look closed but we are not allowed in.  She is a rock star and accepts it pretty well.  She is happy to have Mom and Dad home with her.  She also doesn’t like that we go to the store without her.  She loves shopping.

But we all know this.  Covid19 has been hard.  We are all going through the same things.  There is no end in sight.  Its Easter weekend and people are travelling and prolonging this for the rest of us.  So we do what we can with what we have.  We FaceTime BG every couple days.  We call Poppee and our Grannies sometimes.  And we paint.  I have never considered myself crafty and it has never been my favourite activity.  But my sweet girl enjoys it.  So Mama went to the dollar store and bought art supplies.  And we paint daily.  We have painted with our hands, yarn, sponges, paint brushes, and bingo dabbers.  We picked up pine cones one day in a walk and are going to paint with those as well.  I bought shaving cream and glue so we will paint with fluffy paint too.  And Illyana enjoys the daily activity.  If any readers have any ideas on what else she might enjoy I am all ears!  Lots of the crafts I have found out there in internet land are things she might enjoy having but will not enjoy doing herself at this time.

We are fortunate that we have a yard and a dead end street to play in.  Illyana loves to play outside.  The snow is finally melting and we might be able to play in the grass soon.  She has been enjoying her strider bike in the basement, I want to try on the grass where she has more room!

The point of this rambling? I have a generally happy two year old at home with her favourite people (or at least some of them lol).  We are doing pretty good.  I still don’t feel like a very good stay at home mom, but we are settling into our laid back, self-isolating routine.  Don’t get me wrong, we all want to go back to work and school.  We miss our friends and our daily outings.  But we are creating memories and enjoying time together.  Yes, this is challenging but we will get through it.  I am finding ways to be a stay at home mom.  We are crafting and doing things we can all enjoy.  We are giving lots of bugs and kisses and tickles and games.  She may not understand why, but I know she feels the love and attention of her parents.  May that be her only memory of Covid19.  Weeks of quality time spent with mom and dad.

Just a tired mama

I am struggling.  This month has seemed like it has tested me a lot.  We did a stomach bug and a cold.  I missed something like 9 days of work in January.   I think it was more than I worked.  And I got the cold too.  I’m on week 2 of it.  Feel mostly fine but still sick, you know? At any rate, I’m tired and struggling.

I went to the feeding workshop for the second time.  As usual, Illyana doesn’t really fit into a category or box.  She is between a problem feeder and a picky eater. They gave all these great ideas for picky eaters.  Except we have spent a year implementing these ideas. When the feeding team asked at the end how it was taking it for a second time I said that it was interesting because we have different challenges now than we did last year but we still have the challenges.  I then burst into tears.  Illyana basically didn’t eat for 2 months and no one really has suggestions on how to help her through that.  How to help me through that.  We have this massive team, which is amazing, but at the end of the day, it’s just us on the ground.  And I feel like we are failing. Please don’t tell me I’m not.  I know I am not but it doesn’t change the feeling.  I know it is a daily thing and we rock it a lot of the days.  And I know she knows she is loved.  Love is not lacking around here!
Someone told me that as a helping professional looking at an autism assessment, my world is going to shrink.  They were absolutely correct.  There are support groups in town for parents with children with autism.  The majority of these families have a file in my office.  How do I go to those groups? Neither those families or me will be comfortable. Also how do I stay just a mom when they know where I work? I am there for my own struggles not to work through other people’s based on my job.  I know of several professionals who have children with autism who I hope I can lean on.

I submitted an application(?) for a private clinic.  They have a pediatrician and the psychologist.  It sounds like we might see the pediatrician in a couple months and the psychologist in the fall.  I need to get a referral from our doctor and I can’t see him for 2 weeks.  But I also talked to NHAN and they said they can’t  test until at least 30 months. They are trying to pilot a program to streamline toddlers but I didn’t understand it was a thing yet.  We also won’t get into NHAN until the Fall of 2022 with the current waitlist.  I don’t really know what to do about it all.  I guess we see the pediatrician and see what he says.  30 months isnt that far out.  September 2020.

Our Occupational Therapist, who we are on a waitlist for a sensory profile, is going on maternity leave next month.  This is something that I think might actually help us.  I need to look into private OTs and see what we can do for her that way.  Maybe if I knew what her sensory challenges are we could work with food better? It’s very possible that there are no answers for Illyana but I feel like I need to do something.  If I wait and she gets an autism diagnoses, private professionals will be included in her funding and we wont have to pay out of pocket, but if it actually helps is it worth waiting for? Do we pay for everything? Do we wait and see?

Everything feels so overwhelming and I am so tired.  And I am just having a hard day.

Shot down

We saw the pediatrician today. He actually let me talk today, and I sidetracked him enough that he didnt give me hell about the minimal weight gain (a year ago we had no weight gain, so some is still better!), he didnt give me hell about not seeing the pg hospital dietitian (we are seeing one in Quesnel). But he also didn't support a single thing I said. The fact that Illyana is on an all milk diet at 21 months meant nothing to him. It didnt scream sensory issues or anything. It certainly could not mean Autism in any way shape or form. When he heard she doesn't sleep he blamed it on the co-sleeping. I don't think he appreciated me saying the co-sleeping is a product of our 3 week hospital stay that traumatized her, but it is. He told me to sleep train, cry it out method. Apparently it means nothing that Illyana wakes up screaming 2 or 3 times a night whether I am sleeping beside her or not. That it can take an hour to calm her down. Instead he heard that she wants to play and talk to me because I am there. She hasn't played in the night in over a year. He somehow heard that I dont sleep well sleeping beside her so everything will be fixed if she screams for 8 hours. Part of our cosleeping is that I am already exhausted and we sleep a little better beside each other. I was sleep training before I went back to work for reason. And the fact that we have never slept through the night is certainly not a sign of Autism either. I said that she is no longer doing things she was doing 2 months ago. He shrugged it off. He asked if I was working with the CDC because they do great work. I said yes and that the CDC agreed it could be Autism. I said my daycare scored her in the high risk category for Autism. Nope, Autism is not a possibility. I said I was hoping to do a private assessment. He said you can't test this young. I said the research says you can test by 2 years which we are coming up on. He disagreed. I said I have talked to the clinics and they said I can but I need a pediatrician and speech language to agree with me. He said you cant.

He can disagree all he wants, we already have a referral into the assessment clinic. I dont need him for that. We will just have to wait in line and not pay for an assessment. She will only be 3 when our time is up, so we are still ahead of the game, I just want to give her everything we can now. I hate waiting 18 months to be able to put the services I believe she needs in place. We could probably pay out of pocket for the services instead of paying out of pocket for an assessment though. It's just so frustrating to me. He knew I knew more about toddler autism than he did so he had to stay in charge. Also, he has never done any of the assessments she would need for him to say it could be. He has never looked at anything but her weight. He didnt care that she snored or was always sick or doesnt sleep well or anything else I might bring up. He has always just looked at her weight. Today was the first time we had a real discussion so that is a win ...

He acknowledges that she is a challenge. He said she is "just spirited". He also said that she will likely remain a small eater and a small child and that's just who she is. I have to agree with that, I feel like I have been saying that for a year.

Back in 6 weeks for another round with him.  

Just eat my love, please

I always thought I would be a good mother but I am sure not feeling like I am. Illyana is on hunger strike. She has been for a while. The cold that started it has come and gone. Another round has hit. We have started cheering for every morsel she puts in her mouth. It's still such a small amount. She is so skinny. I'm terrified for our next pediatrician appointment next week. I dont want her back on a feeding tube. I dont want to go back to the hospital.

I was at my doctor for myself and he asked about Illyana. I said that she wasnt eating again. She has never ate breakfast. He asked what I give her - breakfast doesnt need to be cereal you know. I said that morning I had given her ice cream and she still didnt eat it. He told me to get back to the dietitian but i know she has nothing else to offer me. I saw her about a month ago. I have called to make an appointment but missed the office before the holidays. My doctor said I needed the appointment to cover my ass basically. He said he didnt want anyone to say "what did the parents do for this kid". The parents have done everything. Everything.

Do you have any idea how hard it is to watch your kid not eat day after day? How hard it is to not lose your patience when she says no to 20 different meal items at every meal? I offer everything I can find. I'm currently allowing cookies at every meal because at least they have soemthing in them. I dont know what else to do. I'm at a loss. I dont have any more to add amd she wont take anything. If she doesnt want it she throws it at me. They tell me that kids wont starve themselves but it sure feels like she is. Her energy level is still high and she still has wet diapers. So maybe she isnt but she sure isnt growing. She remains in 12-18 month clothes. She is 19 lbs. I know the pediatrician isnt going to be happy.

We are seeking an autism assessment for her. Toddler autism often shows as minimal food intake, lack of sleep, mixed development, speech delay. Illyana has always been different. She went on the speech language waitlist before she was a year and we have just started seeing the pathologist. She is still up every couple hours in the night although she is finally napping most days. Her eating skills have been deemed appropriate. Her eating problems are behavior and not medical. I'm hoping the pediatrician acknowledges all of this and will do whatever I need to seek a private assessment. We could have a private assessment within 6 months and put in more supports for her. We are on the waitlist for a sensory profile with the occupational therapist. She will be receiving extra one on one support at daycare in the next month or so. I am seeking all these things but they will not make her eat better. They will not take away the stress it causes me when she wont eat.

I know I am doing everything for her. I know that she is lucky to have us for her parents. I know she is ahead of the game because we have had all the issues we have had. We are ahead because I work in child and youth mental health and my team leader encouraged us to pursue an assessment. But my patience is thin and I feel like such a garbage mom. I want to be more for her. I want to be everything she needs. Maybe I am but I dont feel it. Mostly I just want her to eat. Nothing else about her bothers me except that she wont eat. Please eat my baby, you are mama's world.

Mom Ramblings

Illyana is sick.  It is just a cold but she has been sick for 2 months.  It’s so hard watching her be sick.  I know every parent can attest to that.  What I am really struggling with is what illness means for Illyana.  Like most of us her appetite decreases when she is sick (fevers seem to be the worst).  But Illyana has been 15 pounds for 4 months.  We have  weigh in next week that I am not looking forward to.  I am afraid that because she is sick and not eating again we are going to be re-hospitalized.  This is something the pediatrician hinted at when I saw him last week.  He said that he would have left Illyana on a tube until she gained substantial weight.  He figures that Children’s Hospital ignored the fact that she had been 15 pounds since December and focused on that she had a cold and lost weight.  Based on these comments, I don’t know what a poor weight gain will mean.  So the fact that Illyana is sick (again? Still?) Is worrisome.  She had been doing pretty good with eating, despite having a runny nose, but since the fever started a week ago she has done far less well.  I’m not sure shes eaten a full meal in a day in the last week.  She is drinking milk and I am putting as many calories as I can into her milk.  Milk with whipping cream; milk with milk powder.  She won’t drink chocolate milk or milk with yogurt.  The last couple days she has been less energetic and less happy, making it that much harder on me.  I  am hyper aware of her caloric intake and it stresses me out when she doesn’t eat.  I then find myself frustrated that she isnt eating.  Part of encouraging her to eat is making mealtime enjoyable and cheerful and happy.  Me being stressed and frustrated makes for none of those things making it a unhelpful cycle.  I know this but I still end up there.  I know that knowing I end up there is the first step in trying to change my reactions but its hard when I m so worried about her.  I don’t want to go back to the hospital for tube feedings.  Illyana is finally starting to settle into some sort of a routine and to be calm again.  The last trip to the hospital really screwed us up.  Not to mention my job.  I want to be at work.  I am excited about my position and think I will really enjoy it.  But I have successfully worked 2 full weeks of the last 8.  And I want to be there.  In January and February I felt like something was missing in my life.  I realized it was having a purpose beyond my home (which is an incredible thing to do I just needed something more, including adult conversation).  Me not working is not an answer to our problems right now.  My Team Leader has assured me that I am not going to lose my job because I have to be with my child (I know that should be a given but I feel like a crappy team member and crappy  hire).  I felt like I was skipping work when I saw my manager at the store on the day Illyana couldn’t be t daycare.  Annoyingly I thought illyana wa feeling better at day and then she got worse 
I realize this is rambling, my life is rambling.  I don’t know how to help Illyana.  I don’t know how to make her healthy.  I don’t know how to get her to eat more. I think she gets so sick because she is so little.  Her 15 pounds just cant fight all these colds at daycare.  I can’t pull her from daycare because I don’t have a support system that can take her and allow me to work.  Nick works night shift and can’t be awake all day to watch her.   We only have one family member in town and he is not well.  My peeps work.
I know there are no easy answers and I know that every parent struggles in some way with all of this in one way or another.  I’m just struggling right now.  I am also realizing that these struggles are maybe just beginning.  I’m afraid (not terrified but worried?) That eating is just the beginning of our struggles and that more is coming down the line.  There is just something different about illyana.  Don’t get me wrong, she is perfect, just different and that’s okay.  We just need to keep doing our thing and dealing with whatever as it comes our way.

But today, I am struggling.  Illyana hasn’t eaten well since last Monday.  She is an unhappy sick today.  I would do anything to make her happy but I don’t know what to do besides wrap her in hugs and cuddles.  Maybe that’s enough but it doesn’t feel like it.

Grief

I talked with  mom of a “unique needs" child today and she helped me understand a lot.  I need to let go of the idea of what parenting looks like and accept our reality.  Illyana is not quite your typical kid and she needs to be treated for who and what she is.  And I need to make her needs work for me.  Cheering for her is unnatural to me but she needs it.  Illyana is so socially motivated and I am an introvert.  We find a level that works for us.  And I might be cheering lots of things I never dreamed I would cheer for because that’s what my kiddo needs.  But the part that really got me is that I don’t just need to let go of my ideals, but I need to grieve them as well. This is not what I expected and its not what the majority of my friends have dealt with, but obviously it is what our adventure is.  Illyana may or may not grow out of her unique needs and we may or may not add other unique needs to who she is.  But she is perfectly Illyana.  I am still kind of in denial so the grief is still to come but its getting closer.  Maybe the grief will live quietly or maybe it will explode out (I’m kind of a one or the other type girl).  But when that grief does come, I already know today’s conversation will make it that much easier.  It’s not grieving my child; its grieving expectations that don’t match reality and moving on to accept and embrace our reality.  I’m in the perfect job for a unique needs child as I get to learn a lot about mental health and some healthy means of coping for all of us.
It really does take a village to raise a child (and support a mama) and I have learned how big and wonderful our village is in the last month.   Thanks for being part of our village

Calories

I’m frustrated. What else is new? As you know, Illyana and I spent 18 days on the hospital recently. All sorts of tests were ran and it was decided that there is nothing wrong with Illyana, she simply does not consume enough calories. Except that it took 18 days of trauma for this to be determined. She had a tube in her nose forcing formula into her. The tube had to be inserted multiple times because they struggled to tape it to her face in such a way that she couldn’t pull it out. She had blood work done three times. Eating became a bigger deal than I would like it to be. Our sleep schedule was disrupted. Daily she would be woken up after falling asleep by a medical professional needing something. At night she was still poked and prodded although she, thankfully, slept through most of those. She got even less sleep than she does on a regular basis. I had to hold her flailing little body down until she would relax into sleep. If she awoke in the night, she sought me out, seeking reassurance she wasn’t alone. And after 18 days of unknown territory, with stressful visitors, we were told to carry on as we were previously. Except those 18 days changed everything. Nine months of sleep training is out the window. Illyana is terrified if I am out of sight. She will still only fall asleep touching me. She slept through the night at the hospital. Last night she was awake every hour. Our routine is gone and we are re building it. But our routine also took months in the making. We took 2 weeks to get used to going to daycare. He went for half day last week but our getting there routine is gone. We are back to work/daycare tomorrow and I don’t know how our morning will go (let’s be honest, I never know, but I m even less sure now). We missed Illyana's vaccinations because we were in the hospital. Vaccinations have never bugged her, she’s always carried on with her life. This set has her with fever – is that the vaccinations, that she is run down or that it scared her more? I don’t know but fevers are not conducive to getting more calories in her as she doesn’t eat when she's not feeling well. Maybe the mot frustrating part is that I have been told to carry on with what I was doing. There is nothing medically wrong with her and physically, there is no reason why she doesn’t eat well. This means that there are no suggestions to offer us. The best suggestion is to cheer loudly every time she does something good eating. It is so unnatural and uncomfortable for me to do this. I get that she respond to social praise but it cant be the only way can it? I’m also supposed to eat the same thing as her so that she see me eating it and wants to eat it too. But shes on a high fat diet that I don’t want to be on. She doesn’t sleep so things like dishes don’t get done s much as I would like. I don’t want to cook two (or 3, depending on Nick’s diet)meals. I struggle to make meals as it is. Then I get told that all food is good food and I am a role model for my daughter in how I view food. Sure but adults don’t need the same fat and they wouldn’t be telling m it’s good foo. The whole give her straight fat is a bizarre concept to me. I feel so alone in this adventure. There is so much pressure to gain weight and eat enough food that I stress out when she doesn’t eat well. We are doing weekly weigh ins. What happens if she doesn’t gain appropriately? I still have so many professionals in my life but no one has any concrete suggestions for me. I have been trying g for 7 months, clearly it I not working! I get that it is me and Illyana the need to figure it out together, I just wish someone could help me. I feel like I’m failing. I feel like I’m failing Illyana. I need help but it I not something anyone can help with.