It’s been a while since I’ve posted anything significant. Life has been busy. I know I always say that, but it is.
So here’s my lengthy update.
Lately I’ve been thinking of ways I can actually make my life easier. I know that’s weird for me because it seems like I always would make my life as hard as possible to outward eyes but now that I’m getting older I’m starting to figure that maybe I should make life a little bit easier on myself so that I have more of myself to give to others. I know I’m still in the stages of having a new baby too, so life won’t be exactly normal for a while yet. Still, a little more simplicity is my prayer.
As I lay nursing in the bed I think of so many things, so many ways that I have changed over the past 5 years, so many ways I have changed since I had my daughter be diagnosed with autism. I’m not the same person that I was when I started this blog. Sometimes I wonder if I’m actually less positive or if something’s wrong with me but I’m really just different. I don’t think it’s bad and so serious really, but I like to reflect and figure my ever-changing self out. I just think I’ve learned a lot and I’m just not the same now that I’m heading into my 28th year.
I feel like I don’t have to write so much to convince myself of how I should feel or how I should be. I used to have to do that in a way to get myself to the stage that I am at now where I can simply be content with the way things are. I’ve accepted that life is full of light and dark (and our life is sometimes full of a lot of dark.)
When I’d write I used to feel like it helped me to have other people comment who share my experiences to let me know that it’s okay. I guess mostly this had to do with being vegan and living a lifestyle that was different than the norm. Now it’s pretty normal to be a vegan. There are so many more vegan recipe blogs and books out there now that it’s not such an alien thing as it was 7 years ago when I began blogging.
I feel that autism is a lot more lonely and even if I did share my experiences I don’t feel like many people could relate. Still, I sometimes find myself wondering if I should write more about it and perhaps it could help other people who are going through the same things.
I also feel like my dreams have changed. I always dreamed of having 5 kids and homeschooling them. Life seemed pretty beautiful in my dream, even easy. Life with my four kids now is not as difficult as it could be and I have wonderful kids, but it’s not as my dream made it out to be and I sometimes reflect upon why that is.
Life was so good when my children were young. The best time of my life was when Autumn was 7, Kesara was 4, and Serafina was a baby. When I think of what changed it all comes back to autism. As depressing as that sounds and as much as I haven’t wanted to admit it, it’s true. Autism is what makes my dream life different than my reality.
I don’t feel it would be difficult to homeschool four kids. I know that sounds crazy to some people but to me I feel like I could manage it. I could be a good mother and do crafts with them, play games, watch a movie, go outside, go for a walk, read stories, cook, bake, eat, learn, and grow together. But with autism we can’t even have a bin of pencil crayons out because Serafina will try to eat them or if we do try to do a craft or watch a movie together she’d be getting into something else while our backs are turned.
Autism makes the days dark and less enjoyable. It was even difficult to have a Christmas tree up because she’d pull off the ornaments or try to knock down the tree. There are so many things our family cannot enjoy or experience because of autism. And I feel bad for my other children too because we have to miss out on so many things. Even normal things like eating a meal together without her being naked and trying to sit on the table or watching a movie without having her shut off the TV or be running water in the kitchen making a flood.
Serafina is a good kid and a really beautiful soul. I don’t believe she’s spoiled or acts out because she’s trying to be bad. I don’t think she’s starved for attention. I think she’s just very hyperactive and very high needs. She needs somebody to be doing something with her all the time otherwise she’ll get into trouble because she’s highly curious about the world. It’s even hard to get her to pay attention to do anything because she’s so not in her body.
We thought about trying natural remedies to help calm her down. We took her to the doctor not long ago to ask about different natural remedies we could possibly give her because we don’t want to have to put her on medication to calm her. I would hate to have to do that! So for now we’ve been trying melatonin and I’ve heard of some other things like chamomile or different vitamins or minerals that might help her. I just think that she needs to be tested in order to find out if she is deficient in anything and how we can help her. Before we think of an unnatural, pharmaceutical approach.
Of course the doctor isn’t familiar with her or her autism, so he said that we should come back again and maybe he’ll contact somebody to get her reassessed. It’s like he doesn’t believe what we’re saying about the way she behaves and he needs somebody to run a test on her who doesn’t know her to tell him what to do. It’s frustrating when these people don’t understand because they don’t live with it 24/7 and can’t sympathize or offer any help. Most doctors don’t even know what autism is and just classify it as a spectrum disorder. Nobody understands autism and each autistic child is different.
She is getting stronger too. The main challenge we have is with her toileting issues. She doesn’t want to go on the toilet but we have had her go a few times this month which was a great success. Now it’s been a week since she’s used it again and she’s totally done with pull-ups. She would find every way possible to get them off, even with her clothes tied on and so she needed many baths a day!
Also now since she’s not wearing pull ups she’s mostly going nude around the house and the one place she likes to go to the bathroom is in her room. We had her floor redone last spring so at least it’s in her room and not on the carpets and other areas of the house but when people can’t watch her all the time she’ll sneak into there and go pee on her floor and so we mop up pee and poop many times a day. It can be very frustrating!
So that is what is going on in our life. It’s not the same as it was 5 years ago. It’s not the same as it was when I started this blog and I could post pictures of my happy girls and the recipes we created and the fun we had in our day. Much of the day is just spent trying to keep Serafina from getting out of trouble and listening to her whine most of the day because she can’t communicate and has no words.
It may sound like a sad reality to many who are reading this, but for us it is ordinary. It is what we are used to. We don’t normally feel sorry for ourselves and our everyday life, but of course there are times when we wish we could do more with her or our other children or go places, like even to the grocery store all together or to a restaurant or even to a friend’s house.
We can’t even really have people come over because she can be so wild. I don’t feel like I’m embarrassed of her so much but I do feel like people judge us and they might be embarrassed of her. I know that Autumn is embarrassed of having any friends in the house because of the way Serafina is and how she gets naked so many times in the day. It’s tough stuff!
When I reached out to our government worker for more help for Serafina they said there’s nothing available except for school. So now school is what we’re considering for her.
I always hated the thought of sending her away while my other kids are at home. I didn’t want to treat her differently than them, but now I’m realizing that maybe it would be easier for us and maybe it would be helpful for her to go away for a few hours every day.
The trouble now is how we get her to wear clothes and go to school and stay in school and somehow behave in a classroom setting. I’m really hoping and praying that she will have a good worker to work with her if we decide to go that route.
Another issue I’m facing right now is with Pheonyx. He’s had a lot of mucus in his poop and streaks and specks of blood as well beginning at 3 months. I read online that it is most likely a food protein allergy. Most babies who have this have a dairy and soy sensitivity so I’ve been going dairy and soy free for about a month now. Luckily my brother is a doctor and could help me out.
When I started I eliminated everything that I knew had soy or dairy in it I didn’t realize there was milk in my probiotics and there was soy in his Vitamin D drops. So now I’ve eliminated that as well (beginning on December 19th) and things don’t really seem to be getting that much better. I’m really worried about him and so I’m going to try and see if this works for another week and after that maybe try eliminating something else that it could be, like gluten or oats.
We don’t suspect that it is a more serious medical issue because he doesn’t show signs of pain. It just shows up in his stools as mucus and blood and it really has me concerned. I want to help him so bad but it’s frustrating not knowing what it could be. I do eat a lot of oats and we do eat wheat so I am wondering if it could be one of those things. The only dairy I was having was some cheese on pizza we’d order once in awhile because I don’t drink milk or eat yogurt or anything like that but I felt like that little bit of cheese was helpful in my breast milk production and gave me a bit more energy since after birth I didn’t have much time to cook.
Being vegan is easy for me as I’ve done it before in the past and I actually enjoy eating vegan and baking everything vegan. Avoiding soy is a very difficult thing. Even though people think that vegetarians or vegans eat a whole bunch of soy, it’s not necessarily true. Everybody eats a lot of soy because it’s in everything from sauces, to salad dressings, to crackers, to cookies, to vitamins and gum. It’s in everything! I’ve learned a lot these days on how to avoid it will and I think it’s healthier too.
I would love to be able to sit and blog more. I have so many things to write about, so many things to share about the kids and about our life and even recipes.
I’ve been making so many different things on this soy free dairy free diet. I’m sure many people could benefit from these recipes, especially those who have allergies to dairy or soy. It’s just finding the time to write! I don’t have time to sit at the computer and type because I’m usually breastfeeding or taking care of one of the children. So I write this now with my voice on my phone because I don’t want to forget these times in my life either and feel that I’m due for an update.
I plan to do a post about Pheonyx again soon too. I want to post his 3 month update with a few pictures and developmental milestones.
If you made it this far in this post I’m glad. I hope this didn’t come off as negative or complaining. It’s just reality. There are also lots of wonderful things going on too that I’d like to post about but this is what has been on my mind these days. The stresses.
And now for some questions…
Have any of you ever had one of your children go through a food protein allergy to something you’re eating while you’re breastfeeding?
Are there any other autism moms out there or people who have experience with autism that have any advice or can at least comfort me in being able to relate to some of these struggles?
Much love & light!
Hang in there. Thank you for sharing. My friend had a son who was diagnosed with autism and school really, really helped him. She spent so much time and energy helping him, (in addition to the professionals at school) and while his autism sounds very different from Serafina, you never know what life has in store. Keep the faith and be willing to understand that you can’t be the expert in everything, and that there are professionals (educators, doctors, etc.) who have specialities in this and perhaps you can find some assistance
All the best.
PS He’s now a freshman at a the premier NYC high school, and integrated with gen ed children without an aide or anything else 🙂
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Yes, I am hoping and praying that she gets the help she needs in life. We all love her so very much! Hoping to get answers and progress in this new year.
Thank you for sharing my friend. Sending you lots of love and warm hugs across the miles. I wish I was closer to lend a hand, have you over for tea, and just be a presence in your life. Hang in there, know I am thinking of you. xo
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That would indeed be great! 🙂
Thank you for this post! Keeping you in my thoughts always 💜💜💜 Message me anytime !
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Thank you friend! I think I will soon! Hope you are doing well! ❤
Hugs to you, Tiffany! You are dealing with a lot.
I know quite a bit about food allergies–my son, Henry, is severely allergic to dairy, eggs, and peanuts. (Your blog has helped us so much with recipes! Thank you!) We didn’t know about his allergies until he ate yogurt for the first time at 6 months and his entire body turned red. I nursed him until he was about 16 months–I didn’t notice blood or anything in his stool, but he was horribly colicky. I cut out all of his allergens while nursing after I found out, which was the first time in my life I had gone without dairy!
Anyway, I wonder if your doctor would recommend a blood test for Pheonyx for the common 8 allergens. I think Henry had his first test at about 8 months. That’s the only way we knew about his egg allergy. I would keep a food journal if I were you, noting when you see the blood and mucus and what you ate that day. (If possible! I know you’ve got a lot going on!)
Good luck to you! You are a fantastic mom, and you are doing a great job.
Thanks Amy! Right now I am keeping a journal and watching him. The Dr. we went to see didn’t think that it was anything. But he wouldn’t look at the pictures I had of his stool so he didn’t really know what was going on. He just thought it was hemorrhoids or a fissure but this has been going on for over a month now and his poop is really mucusy/not normal and from what I’ve read and what my brother has also informed me of is that it is probably an allergy. That’s what it seems to be to me as well. I think it’s gotten kind of better but it’s not 100% better yet. So I will keep trying and possibly also get another doctors appointment and see if he would be willing to do that. From what I read about food protein induced colitis is that it’s sometimes isn’t detectable in an allergy test because it’s just an immune response inside the gut. I’m not too sure though. Thank you for your comment!
Hi, I have 2 Deaf friends who work with aUtistic children and they have mentioned that communicating in American Sign Language has been a great communication tool for nonverbal children. You might want to research that avenue, it may help.
Thanks for your comment! We have tried some signs with Serafina but her hyperactivity makes it hard to engage her. I will research it more and hopefully if and when she goes to school they would also work on this.