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.

It’s me again.

I can’t believe how long I go in between writing here. I wish I could push myself to do it more but it always falls to the back of my mind. Until something pushes it forward. It’s usually stress or nerves. This time it’s something I’ve been thinking about for a few weeks. Not sure exactly how to write about it.

Last month I took my 6 year old to a child psychiatrist. Over the past few years life with him has been a struggle. He has gotten harder and harder to deal with. I have always felt there was something there, I have taken him to doctors before. I have looked for help before, years ago. But I gave up because the diagnosis did not fit.

Since he was born he was not easy. He needed to be held a lot, I don’t mind the holding but it was more than any of my others. Always in my arms to sleep, twisting his arms in my shirt as I nursed him, as he got older he would sit and hold the tag on his shirt or pants. If I’d sit at the computer when he was little he would climb on my back and sit behind me. He is the most restless sleeper I have ever seen in my life. For awhile he had been sleeping better in his own room, about 2 1/2 years ago when we had our 7th baby was born. But then he went back to coming to our bed. He wants to be touching someone constantly. But, at night, while he sleeps, he is restless. Not just restless but he kicks and punches the bed, and sometimes me if I am in the way. He will twist and turn, fall out of the bed, go from one end to the other. He doesn’t rest well. He remembers none of it. I have recently found a homeopathic remedy that has helped. It seems to calm his brain and let him rest. I can see the difference when he doesn’t have it.

A few years ago I took him to a pediatrician upon the recommendation of our family dcotor. This pediatrician told me she didn’t think anything was wrong. That he was just behaving badly. She dismissed my concerns on his sensory needs and the restless sleeping. I didn’t go back to her. I wasn’t hoping for a major diagnosis but what she was saying was not what I was seeing everyday.

Awhile after that I took him to a local organization in hopes of finding help. It is a counselling type place but the counselor saw nothing of what I told her and told her he was just seeking attention and to try to be more of a positive parent, which I think I am pretty good at. That was a frustrating thing to hear. We spent about an hour or so with her. He played while we talked and she really didn’t communicate much with him. I did try some of her suggestions but because it wasn’t really the reason, it didn’t help.

So our family just went day by day. Some days were good. Some days were ok. Some days were hard. A lot of days I cried. More and more as time has gone by, the more I felt helpless and sad. My son was angry all the time. Even when he wasn’t. He would just talk and sound angry. He was picking on his siblings, starting fights with them, yelling at me, screaming. Screaming as loud as his lungs could scream. I saw my sweet boy slipping away and I wanted him back.We all want him back.

I made an appointment with our family doctor, again. I told him everything. I cried. I was so overwhelmed and sad. He sent us to this other doctor. So that brings us to the beginning of this post. I took my son to a child psychiatrist. I thought I was going to get a diagnosis of sensory processing disorder and maybe oppositional defiant disorder. I didn’t. The doctor diagnosed him as being on the autism spectrum. I denied it for a few weeks. I thought the doctor was completely wrong. He didn’t spend enough time with my son to judge that. He focused on silly things I didn’t agree with. Then I got the written report the doctor was sending my family doctor. As I read through it, I realized everything he said was true. He was describing everything about him and I realized I had to accept this and move forward to try and help my son and our family.

I reached out to a friend and she gave me a lot of information to learn. She added me to some groups and another friend reached out when she saw me in there. I realized I needed to just get this out because it made me feel so much less alone and lost when I had friends helping me.

I don’t know if we will ever get that sweet boy back, sometimes I feel like he is lost. I know I see glimpses of him now and again. Those moments when he giggles When smiles and hugs me. When he tells me I’m the best mommy ever. When he hugs his little brother and tells him he loves him so much. I guess he’s there more than I realize. Sometimes it just feels like so much less. When he’s yelling at me and tells me to never talk to him ever again. Or he starts a fight with every brother that goes near him. He can be such an amazing little boy and then he can be so very hard. Most days it feels like the hard behavior overtakes the good.

But this diagnosis helps. I blamed myself for so long. What did I do wrong? How did I raise him differently from the other kids for him to turn out like this? So it helps me to not blame myself so much. And it helps us to realize it’s not his fault he can’t control himself with the impulses he has. Now we have to work together to help him. I know this is just the beginning but it’s given me hope that we can help him.