I don't talk about my son and his autism in this blog very often. In fact, aside from a few close friends I don't talk about it with others either. We don't think of Ben as our 'autistic' son, just our son who happens to be a handful. ;)
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| Ben pretending to fly with Daddy |
For years we didn't really even say 'autism' around here. We preferred 'needs' it just seemed much less label-y. We've tried to downplay the issues to the outside world. It's not because we are embarrassed or anything but we try to keep things moving forward rather than get bogged down in diagnosis.
And we work within our family to get Ben the best care and the best shot for a happy, healthy life.
But it's been tough. I've had days where we just can't get through to him. Like any kid, he has good days and bad days. Ben is a non-stop kid. Even on his best days you can't take your eyes off of him because he likes to get into everything.
We recently began seeing a top-notch specialist in the field and Ben has been put on a strict gluten-free and dairy free diet. He's also taking an anti-fungal to get rid of yeast build up and getting supplements to help heal. These approaches are pretty tried and true and I believe they will help him but the process has been HELL. Ben is going through withdrawal and die-off (Die-off happens when yeast dies and it's not pretty - but you go thru it to get to a better other side. Here's an article about it.)
He's been aggressive in just the last two weeks he has hit me in a face with a paper weight (and it still throbs) has dumped glasses of water on the floor, peed on the carpet and has chucked every toy in his toy box at us (several times). He dropped my computer on my foot (my toe is still black and blue), and that's just for starters. Poor Ben is having a very hard time all around. Everyday we have been dealing with more than it seems we can take. But we figure it out. They compare the food withdrawal in these kids to drug addicts. In fact the reason why they have to go GF and DF is because the food doesn't digest right and it turns into a toxin that becomes like an opiate in these kids. It's partially why they have such slurred reactions and seemingly don't feel pain - they have produced pain-killing opiates within!
But I have hope. There are moments of clarity now - I can see glimpses of him getting better. After a violent episode he is sweaty and flush and seems legitimately confused. He'll begin sobbing and then curl in my lap and say, "I'm very, very sorry. I don't know why I did that." And I believe him. In those moments I know that my son is in there and trying to escape a body and brain that is keeping him trapped. It is my and my husband's job to help him get out or at least reach whatever his "best" is.
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| One of my fav. pics. Ben having the best time ever with Angela (who braved lots of spinning rides and endured dizzy nausea for his joy) |
And I thank God every single day that I get to run. That I have time when he is in school or some time on the weekend when my husband is home to lace up my sneakers and run. If I didn't have running, I'm sure I would be smoking, drinking or eating away those moments where I just don't know how to help him. Those moments where I feel like a shitty mommy because I just don't feel equipped to deal.
It makes me feel proud that my son knows me as a runner. He knows when my sneakers go on that "Mommy is going to exercise." He likes to ask me about my medals. He says he wants to run someday. I can't wait for his first fun run race.
It makes me feel proud that my son knows me as a runner. He knows when my sneakers go on that "Mommy is going to exercise." He likes to ask me about my medals. He says he wants to run someday. I can't wait for his first fun run race.
Saturday was hard. He was in a destructive place and he was explosive. My husband said, "run." I cried in my car as I pulled out of the driveway. I know my boy is hurting and I want him to get better. I ran a fast 3 miles. I sweated, my mind was cleaned. I came back with sweat instead of tears and we made it through the day. Sunday was better. Somedays it's overwhelming - but if I can find even ten minutes to run, it helps me keep it together and keep moving on this road of recovery for my son.
Thanks for listening.
XO
Jen
PS: If someone you know is dealing with Autism, ADHD or other childhood behavior issues, this book was easy to read and eye-opening: Healing The New Childhood Academics: Autism, ADHD, Asthma and Allergies. By Dr. Kenneth Bock - the expert we are seeing is his colleague.
17 comments:
I had no idea about your son, but what I read today is as true as when I met you several years ago - you are a great Mom. You are doing what you can for your son to be his best and that's a beautiful thing. I pray that B has more good days than destructive ones... that the new diet will help out and that running will continue to be a place of peace and clarity for you!
I'm so sorry Jen. Of course this made me cry. Ben is so lucky to have you and Marty as his parents.
I really wish I was close enough to give you a hug right this second. Love you, and adore Ben. He's an awesome little kid, and you guys are terrific. You know you can always call if you want to talk. Or not talk--we can clink glasses over the phone.
I'm sorry Jen. But I get it. We just went thru the yeast stuff this summer. It has completely cut down 90% of the violent behavior we were having at home. Sometimes it just takes longer to get through it. And the GFCF well it's worth it to imo. We also do a probiotic, fish oil and another oil (both are Barleans). The probiotic we have had to be very careful because some of them have residue of milk and it was messing our kid up. I'll try to update our little one next week. Take care.
ben is blessed to have you! xoxoxo
So glad to hear you are trying every option imaginable to help Ben. Even though the withdrawal is hell, a change in diet just makes so much sense. If he were diabetic or had a nut allergy, you'd be sure to follow protocol to insure his health and safety. I'll keep Ben and you and Marty in my thoughts and prayers that this is just a small bump in the road. One day, you'll be sitting around the kitchen table telling Ben what a terror he was and he'll laugh, not believing the torture he put you through, because you're doing this early enough that he probably won't remember a damn thing. Hopefully one day you'll be able to look back on this time and feel good about it. I imagine right now you feel like you're drowning. Grab onto each other, friends, support groups...just don't give up.
I have a son that was recently diagnosed with Celiac disease. All his life he had mood swings like you are talking about and then would cry because he felt so bad about it. He has been off gluten, dairy and soy for 7 months now. His behavior was dramatically better in 3 months and is still improving. I will the best of luck to your family and my prayers are with you.
I love how you love him! My children (adopted) were exposed to alcohol and drugs in utero which has basically rewired their brains. And there are some days you just have to make it to bedtime and get it over with because its so bad and some days are amazing. You are a good momma, don't doubt yourself!! And you are a total inspiration to me!!
You're a wonderful mom!!! Ben is a lucky lil man to have you as his Mommy :-) love you guys!!
He is too cute in those pictures! I definitely understand wanting to downplay it. He should be able to be just a kid, not an autistic child. I think that a lot of people are uneducated about autism, and more info needs to be out there. The information about how their diets effect their behavior is very interesting to me from a scientific standpoint. I hope you have lots of luck with it!
Thank you everyone for your kind comments. I truly appreciate the support, love and understanding. He's a great kid and we are on a journey. There will be sunny days and rainy days - just like in everyone's life. :)
Oh wow! I'm very curious, if you'd post an update about changes once the food withdrawals are complete. That's very interesting. {hugs} to you!
Jen, I will definitely post an update. Even with the hard moments, I do see improvements in other areas and I think the food changes are going to a huge benefit overall. (unfortunately, it would be so much easier if I didn't have to worry about his diet!)
Huge hugs to you. You are a wonderful mom and a brave mom to share your story. I am so glad you did as I have someone in mind who I feel should read the book you recommended as perhaps it could help her with her child - who is autistic. I will need to ask her if she has tried the GF/DF but would love to hear how it works for your son.
You are truly an inspiring woman. I am a special education teacher and a runner. All but one of my students have severe autism, and you're uplifting attitude will make all the difference in Ben's life! I just read the book The Reason I Jump. I am sure you've heard about it, but if you haven't it is something I think every parent and teacher of a child with autism should read. It's written by a 13 year old boy who is nonverbal and has severe autism. He answers many of the questions we have about autism and behaviors seen with autism. It's such an easy read, and I found it to be eye opening! Best of luck, and hang in there!
Shannon
Onceuponafattime.blogspot.com
Thank you so much for your comments. Erica - He's doing better now and I think it's all working. The road is tough (everyday he asks for his old gluten and dairy filled favorites and he's smart enough to know the other versions just isn't what he wants.) I'm also stressing about Halloween - everyday he wakes up ready to "trick or treat" and get awesome candy. We'll deal but it'll be tricky! ;)
Thank you Shannon - I'm not familiar with that book but I'm getting ASAP!
you are very strong..i am also suffusing from muscle spasms .your post is very impressive thanks for sharing
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