Living with autism

Do you ever watch your child sleep and just cry?
My 8 year old needs someone to lie down with him at bedtime. Sometimes I lay with him in my arms(he’s a sensory seeker) and look at his sweet face and just cry.
I cry because I’ve gotten upset with him.
I cry because I’m afraid I’m failing him.
I cry because I hate that he has to deal with autism.
I cry because autism makes him scream and feel overwhelmed.
I cry because I worry about his future.
I cry because I’m afraid I’m not doing enough and spending enough time to help him.
I cry because i feel completely lost and overwhelmed.

I know there are those out there who do the whole my kids super power is autism thing. Not me. Autism makes my son feel sad and angry. He doesn’t understand why kids his age don’t play with him because he’s mentally not 8.
The past year has been unbelievably hard. It’s been a rough few days of lots of screaming at me. I do it on my own a lot because of my husband’s job and it starts to get to you after awhile.

World Breastfeeding Week

In honor of World Breastfeeding Week I thought I’d share my journey. Believe it or not, it has been going on since I had my first child, over 21 years ago!

March 22, 1999 I gave birth to my first baby, a girl. Because I had a c-section, I was in the hospital for 3 days. I delivered her in Virginia and it was so different there than when I moved to Canada. They wouldn’t let me get up, I had to be on a liquid diet. It wasn’t nice. And I struggled with learning to breastfeed. I did have a great nurse who helped me. After we figured it out, it went well! She wasn’t a big baby and was probably a pretty typical nurser.
When she was 14 months old, I found out we were expected our 2nd baby. I was still going to my OB in Virginia, despite living in Ontario. I went with my husband in his truck to visit my family and would see my doctor. I knew it wouldn’t last. They told me I should wean my daughter. I didn’t know any better. So at 16 months old, she was done. It wasn’t hard and she didn’t seem to mind. I will always wish I didn’t listen to them though.

In March 2001, I had our second daughter. Oh she was a hard one!! We struggled with thrush and my nipples bled. I would put ice cubes on them to numb them enough so it didn’t hurt when she latched on. I finally had a lactation consultant come to my house and she helped me. It made so much of a difference. But we fought the thrush for a long time. She had a reaction to the medication my doctor prescribed so we used gentian violet. The poor thing went around with purple lips so often. In April, 2003 she decided one night she wanted Daddy to put her to bed. She never breastfed again. It was bittersweet. I was 8 months pregnant with our third, but I wasn’t prepared for such an abrupt stop!

May 2003 was the birth of our first son. His birth was great but the recovery was not. I ended up having spinal headaches from the spinal during the c-section. The nurses didn’t listen to me for 3 days. I was in so much pain. Finally I got an epidural blood patch and started feeling better. Able to go home at 5 days. Thankfully, he was an amazing baby for the first 3 weeks! He latched on like neither of my girls had done. It was amazing! I ended up breastfeeding him for 3 years and 7 months. I always say there is nothing like nursing an older child. When you have a baby, it’s all about nutrition. You feel like a milk machine. But as he got older, and he was a very verbal child from a young age. Extremely intelligent and could have conversations from very young. When he would climb on my lap to nurse he would tell me, “thank you for mommy milk” or “I love mommy milk”. It was such sweet moments. And even though that little boy is now 17, I will never forget that special bond we had. A lot of people look down on extended breastfeeding. Let me tell you, it’s not just about the nutritional side.

Before I weaned my son, I got pregnant with our forth child. He was born in June 2007. He was my most difficult. He was born very small, just over 6 lbs. He was so tiny, we could see through his ears. My dr wouldn’t listen to me on my ovulation dates and went by me period, but I knew he wasn’t as far as they thought. He was born at 37 weeks(my dates). I had been having higher blood pressure and they didn’t want to risk it.

He ended up having a dairy allergy, that I self diagnosed at 3 weeks old. My husband had one as a child. My son would scream and scream.  He would have  a rock hard stomach and arch his back. Every time I nursed him it would take hours. It was like he forgot how and I had to reteach him with each time. By the time he was done, we would have to start over. This went on for his first two and a half months. He was a tiny baby, and even now at 13 is small. When he was 3 weeks old, I noticed how he’d cry harder when I ate dairy. I brought it up to my family doctor and he completely dismissed me. But I knew. My husband had been allergic until he was 12, so there was family history. I started learning about eliminating dairy from my diet. He was so much better. Still not like we would hope, but better. He had allergy testing at 12 months, which confirmed his allergy. He just last year at 12, finally tested negative and is now able to eat dairy. It was a long 12 years! But he nursed for 2 1/2 years and I was dairy free the whole time. And yes, by that time, I was expecting another baby!

Our 5th baby came on Groundhog’s day 2010. He was 10 lb 1/2 oz and he was a hungry boy! He grew bigger than any baby I have had and most I have seen. He was a great eater. He ate no solids until he was 9-10 months old. He had some health problems that we had to deal with. He had a massive abscess on his neck caused by a staph infection. Because of that, we delayed solids. We didn’t know he had been fighting staph for awhile, we almost lost him. He was the life of the hospital though. His surgeon went on and on how adorable his chubby legs were and she couldn’t believe he was only breastfeeding. A friend called him my sumo wrestler.

He breastfed until one week before our 6th baby came, a month before he turned 3. January 2013 I had another boy. I knew right away he was a different child. He needed physical contact all the time. As he got older it got more and more. He was very attached to nursing and as a toddler wouldn’t let me sit without wanting to climb on my lap wanting mommy milk. He had a speech delay but he could communicate with us. When I would not nurse him all night long, he’d get mad at me and hit me. When I would nurse him to sleep, he would twist his arms and legs in my sleep. Or rub the tag on his shirt or pants. I discovered he was a sensory seeker from all these little things. He wasn’t the easiest to nurse because he acted out and was physically hard on me. I don’t want to say abusive because he was only a child, but sometimes I felt that way. Last August, at 6 years old, we found out he has autism. It was a shock to me. But I knew long ago there was something different, I just didn’t know what it was. Our breastfeeding relationship went on for 4 years and a month. I was shocked he stopped. The last time I nursed him was not expected to be our last. The next day, I went to my 38 week doctor appointment for baby #7. I was developing pre-eclampsia and my doctor wanted to deliver the baby a week early. I was sad it ended that way. But he was 100% ok with it. Even coming to see me at the hospital, he announced “Mommy milk is for the baby!” There was no jealousy and no sadness from him and I knew I had done my job.

We are now at almost 3 1/2 years of nursing my 7th baby. He was a pretty easy baby to get going and has been overall. He is a little difficult at times and for awhile wanted to nurse all night long, this was at 3 yrs old. LOL. So I have him down to mornings, nap(when he takes one) and bedtime. He does still wake up at night wanting mommy milk. And I tell him, not till morning. He is the only baby that we have co-slept from birth. I think my husband is done with that. But it’s not so bad. Seeing his sweet face when I fall asleep at night. Having him scoot over to me so he can snuggle. I hope we can continue until he’s ready to be done. Whenever that is. He also was a very verbal little boy. It’s funny, at first he didn’t make a sound. I think he was soaking everything up. Then he exploded at around a year old. Sentences that shocked everyone. No one could believe he was so young. And he tells me, “I love mommy milk.” And no matter how many times I hear that, it will never cease to melt my heart. These special moments that will be gone before long. I will cherish each of them.

I have been pregnant, breastfeeding, or both since June 1998 21 1/2 years.  Minus one week when #5 stopped a week before #6, I have been nursing straight 10 years. It’s an amazing thing. Something I will never regret.

So much to consider…

My husband brought up a serious conversation last night.

He told me he wouldn’t be against my homeschooling our boys. In the beginning of all of this, I was an advocate for full return to school. Back the way it was. My hope that this may happen has dwindled more and more each day. With each announcement, my heart has sunk further and further. After I saw the recent video of the pilot schools in our school board, I really started questioning it. The hand washing station was the only positive I saw. It made me sad. Stickers on the floor, the teachers will be in masks. How will my autistic 7 yr old handle not seeing his teacher smile at him? Will they hold his hand when he is having a bad day? Or will they be too afraid? What happens if the teacher or someone in their class tests positive? Will they have to self isolate? I refuse to have my children tested, so they’d be stuck at home for 2 weeks. And does that then mean ALL of my family will have to self isolate for 2 weeks? There are 10 of us in my home. Five that continued working full time through Covid and never got sick, never had to isolate. I run a home preschool with other children. Will I have to close and lose my income? What would that mean for my families?

I admit, I am terrified at the thought of homeschooling. My 7 yr old, as I said has autism. He is not an easy child. He is behind in his reading. His teacher was trying to get him help but our school drug their feet and never got it together until this started. I have tried, but he screams and cries and throws things at me. Or will work on the computer for 5 minutes then sneak to games. My 10 yr old has ADHD. He also has anxiety. And that worries me. He has not handled the isolation well. My 13 yr old surprisingly did very well, at first anyway. Then he got bored with the school work. My 17 yr old I thought would be fine to go to school. Unless they mandate masks. He works at Tim Horton’s. He is already forced to wear one for his shifts. One mask for 6-8 hour shifts. If he has to wear a mask on the bus, he’d be in a mask from 8 am until 3:30, then from 4-10 when he gets off work, and on weekends too. It’s too much. But what can I do? What are you doing? Are you choosing to do traditional homeschooling? We are not religious so the programs that are religious aren’t for us. I wonder if I should just do the school distance learning? I hated it in the spring. But then maybe I could get help for my 7 yr old. I am so overwhelmed and break down crying on a regular basis. To be clear, I am not afraid of Covid. I am afraid of what it is doing to our society. The fear it is spreading. The way it has thrown our lives into turmoil. Upside down. I know I am not alone. Hugs to all the parents going through this same struggle.

Summer is flying by

I can’t believe July is almost over. In a way it seems like March break never ended lol. And now we are close to school starting back up. While I am not overly concerned with my children catching Covid, I am terrified of what this school year will look like.
I have 4 boys that will be in school. One in his last year of high school. The year that should be fun. He has already told me if they make them wear masks, he isn’t going. He already is forced to wear a mask for his job. He would be in a mask all day long. I told him I completely support his decision. Because if they make the little boys wear them, I won’t be sending them. I am already feel anxiety about sending them anyway. Will they make everyone physically distance? The amount of chemicals that are going to be used worries me. And what happens if their teacher or a classmate tests positive? Will they be forced to stay home for two weeks? Which would then mean our entire household will be quarantined. I refuse to have my children get a covid test. Disagree with me if you’d like, but the results have been too untrustworthy. And then if they are forced home, my preschool will need to be closed until we are all clear. There goes all of our incomes.
Then there is the bus. They are now cutting the bus capacity by 60%. That is a lot of children. Our little boys were on a pretty full bus last year. Some days my husband would pick them up if he got home in time but it wasn’t guaranteed, and now with his job being up and down, we definitely couldn’t plan for it.

I know the anxiety I am feeling. And I get to stay home. I can’t imagine the working parents. I have two children with special needs that really need to go to school. They need someone who knows how to teach for their needs. They also need the social side of it all. I guess though, I will wait until our school board decides on a return plan and determine what will be best for us.

I do know, this is going to be a long, stressful school year.

Just when I think I’m ok

Today a Facebook friend posted some pictures of her belly..she is a week ahead of where I was supposed to be. I realized I would have been 15 weeks pregnant this week. Almost 4 months. It’s like a stab in my heart. I’m still having to get my weekly bloodwork.  This week my HCG was 9. I’m happy it was so low but so very sad at the same time. I wanted that baby so very much. Despite my concerns about my weight and my hernia, I was so excited..

I’m trying to just keep busy. Working with the boys and schoolwork. Clean the house. It’s hard when we’re stuck at home. I can’t even be excited about my preschool because I don’t even know if I’ll be able to reopen. Preschool is something that keeps my mind busy. Planning and making things. But as it looks right now I won’t be opening before September.  And maybe not even then. If parents are afraid to send their kids then I have no one to teach. And that makes me even more upset about losing this baby. At least when I thought a baby was coming I had a little hope.

The longer we’re trapped in this house the more alone I feel. The days get harder.  The house gets messier, the boys get wilder.

I don’t have a lot of friends but the ones I do, I miss. I miss our walks and talks at playgroup.  I miss watching Lucas playing with his friends.  I miss those smiling little faces when they come in my door. I miss my boys not feeling anxious and overwhelmed.

I don’t think life is ever going back. But I have watched the teachers in Quebec talking about what school will look like for them as they reopen. I cried. I can’t send my children to that. Everything they loved about school will be gone. I worry about the fall. We have two going to college, will they even be able? One will be in 12th grade, another in 8th. Will they get all the special moments? Will my oldest daughter’s business survive this? I feel like hers and my businesses have been crushed by this shutdown.  And sadly, we’re not alone.

And it’s snowing today. I guess it matches my mood.

Today was the day.

This weekend has been rough. And I mean rough.

Friday afternoon I started having major pains. I felt like I was going to throw up. Cramps that felt like contractions, back ache, leg pains. My entire body hurt.

A good friend picked up dinner for us because my husband wasn’t home and none of my older kids were either. Another friend dropped off a heating pad.

The major pains eased off around 9 pm.

Saturday morning I wasn’t feeling too awful. But again in the afternoon the pains came. Horrible contraction like cramps. Back ache. I couldn’t believe how much pain I was in.

After taking advil and clutching the heating pad, I finally started feeling better. My husband went and picked up dinner and I was finally not in so much pain that I could go to sleep.

Sunday morning, today, I passed a giant mass like nothing I have ever seen before. My first loss was our very first pregnancy. I had gone with my husband to work, he thought it would help me get my mind off of it. So I was in a bathroom of some business he was delivering at when I felt it all come out. I didn’t dare even look because it was not the best bathroom. I was also young and healed so fast from that. I was also only 6 weeks along. My loss before my 3 year old was nothing like this. Yes I bled for 4 months straight but I had retained tissues so I never passed anything more than a large clot here and there. Last March it was a very early loss, I had only known for a week and it was nothing more than a heavy period. This one has been so much more.

I am feeling much better today. Only some backaches and light cramping. So here’s hoping that things are finally progressing the way they should. I will go again on Thursday to have my HCG done. I have to imagine after today it should be quite low. I hope anyway. I am ready for this to just be over. To start feeling like myself again and move on with whatever life brings us. Maybe we can eventually leave the house again…..

It’s finally happening.

Monday I started spotting. Yesterday it was heavier. It’s been on and off since but finally it’s happening.

I go today for another hcg blood draw. I will know by morning what the numbers are. But I think it’s finally here.

It’s been a hard, emotional week. For the rest of my family this pregnancy ended 5 weeks ago. For me, it’s finally just starting to end. I hope it goes quickly and without complications. I just want my body to do it on its own and I can move on with our lives and grieve our lost baby. Most likely was our last chance. Two in a row makes it more real.

And that’s the hardest part….

Having a rough day

Today has been a hard one. My 3 year old woke up early so  I’m extra tired. My other boys have not been listening. Today was also my weekly blood draw. The woman working at the lab feels sorry for me. Every week she says she was hoping I wouldn’t have to come again. Me too. Me too.

I don’t have the best experience with getting my blood taken. I have terrible veins. This woman is good though and has pretty good luck mostly.

Today it was very painful.  My arm still hurts. She said she could see the hole from last week and was basically exactly in the same spot. She told me the longer I go the more painful it can be. I might develop scar tissue. Next week she’s going to try my left arm.

I’m just reliving my last loss, without the 4 month bleeding. I’m honestly not sure which is worse. Now I’m just waiting every day for it to start. Then I was waiting every day for it to end.

5 weeks now

It’s been 5 weeks today since that ultrasound that told me my pregnancy wasn’t viable.

FIVE WEEKS and yet still no sign it is ending. I am so grateful I had that ultrasound. I could have been sitting and waiting like the last time, planning and excited. I am so glad I got my doctor to order the ultrasound. As awful as those moments were, I know there is no life growing inside of me. I know it will end.

Trying to pretend everything is normal for my family is the hardest part. None of them really know. None of them understand what I am emotionally going through every single day. My daughters are great. They know when I need a hug and I know I can talk to them about it. But I also don’t want them to be sad either. I know they were excited about another baby. Yes, they actually were lol.

Being trapped at home has made this so much worse. I can’t go out to keep myself busy. I stay at home and try to get through each day. Hopefully it won’t be much longer…

It’s been almost a month now….

I should be almost 11 weeks pregnant,  well technically I am. But it stopped developing many weeks ago.  I have a standing order at the lab to go for bloodwork.  I go every Thursday morning.  Usually when I leave I drive home and sit and cry in the van before I go inside.

My hcg finally started dropping last week. By about 10,000 then again another 10,000 this week. So it looks like I’ve got over a week left still of this to go.

I haven’t told many people.  My mom, a couple close friends.  I know what people think. I know what they say. Believe it or not, they’ve said it to my face during past losses. Maybe you shouldn’t have anymore.  Appreciate the children you have. Maybe it’s your age.

Think every thought you have but one word of advice, never tell a grieving woman these words. It destroys them, it destroys friendships. It hurts more than you can you ever imagine.

Yes I’m extremely lucky. I have 7 amazing, healthy children.  I don’t take that for granted. I don’t not appreciate them. There is nothing wrong with my being sad about a loss. This is my 4th miscarriage.  With as many children as I’ve had that’s probably not an abnormal amount. If you’ve never been through it, I pray you never have to.

I don’t care about your opinion.  I don’t care if you don’t think I should have anymore.

And if you’re having a baby and I’m distant, I’m sorry.  I don’t mean to be. It’s not that I’m not happy for you. It’s just my heart is breaking.