Maybe Emma really does have a thyroid issue and if I keep the appointment next week, he will run the tests and tell, me – Wow! I’ve never seen a kid with such irregular levels. Maybe everything will change because I kept this appointment.
This was my thought when Emma bounded into our bedroom this morning. ”Good waiting for light out! Good waking Mommy!” she chortled as she burrowed under the covers next to me. I allowed myself two minutes to snuggle with her before getting up.
Even though I know to not give these aberrant thoughts too much weight, it is impossible for me not to go there. I guess the difference these past seven years have made is not that I no longer have them, as stated above obviously I do, but more that I don’t always act on them. Over the years I have stopped looking to vitamin and herbal supplements as the thing that will transform Emma into a child who can comprehend all that is said to her and act accordingly. A child who does not need to be coached every step of the way when brushing her teeth, washing her hair or drying herself off. A child who is curious about the world around her and asks questions related to that wonder and curiosity. A child who can play with other children, have friendships, play-dates, sleepovers and is invited to and goes to other children’s birthday parties. I no longer believe a tincture of something will provide her with those things. But somewhere, in some small recess of my brain I can’t help but continue to hold out hope that one day we will find the thing, that magical thing that will rearrange her brain, making this world we call our own into one she too can navigate.
For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book.com
Hi Ariane,
I have spent the last 2 days reading your blog, and I just wanted to thank you for expressing so many of the things I have felt on this roller coaster ride, since my son was diagnosed with ASD 3 years ago. We are also endlessly chasing after so many therapies, ABA, RDI, Floortime, music and hippotherapy to name a few, and then biomedically with Antivirals, antifungals, chelation, MB12 shots, creams, diet and hundreds of supplements. My son is 5, and like your daughter, nothing has cured him yet, but we still have hope and keep plugging along. His language and speech pattern reminds me a lot like Emma’s, except he is still getting his pronouns mixed up.
Reading your blog is like an expression of all the thoughts going through my head, the worry and panic, but also the immense amount of determination to help our kids and the feelings of elation when they do something so great, that other parents of typical children would take for granted. Your blog is so honest, and makes me feel like I’m not alone in all this craziness
I haven’t had time to read through it all, but I saw that you retried the diet. We were on the GFCFSF diet for a year, and only saw a big difference when removing dairy. My son would automatically start drooling and have diarehea, and would get very spaced out and movements would be slow reacting when even a small amount of dairy was introduced. My typical 3 yr old son, would also start drooling with dairy, but he would be become extremely hyper and impulsive. Since there is an automatic physical response (I think the drooling might be from glands swelling) I know that diet affects both my kids so we have stayed dairy free. Gluten removal did nothing for my boys. But proteins similar dairy, like peanuts, soy and chocolate create the same reaction but to a lesser degree. We have tried goat’s and sheep’s milk and have had the same reaction. Next thing to try is Camel’s Milk, I still can’t believe I’m considering it, but I have heard many success stories
Another thing that helped tremendously for us in healing the gut were digestive enzymes before every meal. My son gained much needed weight, and became much less picky with food. I think b/c his stomach was hurting less, less foods with certain smells or textures that would previously make him gag, he began to like. He still won’t eat fruit in whole form (only when I juice it or make smoothies) but he eats all the veggies (even the strange ones other kids won’t eat) and a wide range of meats, nuts, herbs and legumes when previously he was limited to only eat 4 or 5 things. he became hungry all the time, and the dark circles under his eyes disappeared and he stopped pressing pillows under his stomach and screeching at foods he didn’t like, and began to feed himself. We started about 1.5 yrs ago, and out of everything it has been the best intervention with the biggest impact on our quality of life. Mealtimes are much less stressful than they used to be. We use is a broad spectrum digestive enzyme with DPP-IV activity in it that helps digest different food issues, since we still aren’t sure which other foods may be affecting him.
Wasn’t sure if you had tried enzymes yet. We had gone to 3 Dan’s before one suggested using them, and after reading more in depth about autism and the gut connection, I couldn’t believe we had overlooked something that made so much sense for my son and his food issues.
Look forward to reading more of your journey!
Shiri
Hi Shiri,
It’s great to hear from you. Yes, about to launch into the whole enzyme part of all of this. We are working with a naturopath currently and while the diet did absolutely nothing, going back on it was an interesting exercise and in a roundabout way it ended up expanding the foods she’ll eat by quite a bit. So in the end, I think it’s been positive. We are now completely off of it, but Emma is so desperate to eat, she’s tasting vegetables and fruits she wouldn’t have touched prior to this. It sounds like the diet has had a great impact on both your two. Really glad to hear it. At least it’s one more thing to cross off the list! Be in touch and thanks for reaching out.
I feel the same way…..but yet I cannot help thinking that one of these treatments will be it. We had start cranial sacral three weeks ago. Somehow I thought maybe I was seeing a difference. But then Emma had a rough couple of days and I found myself in tears. On those days, those evenings after I realize maybe this treatment is not that magical thing, I start feeling rather jealous of other families. It is hard to listen to stories of my friend’s and how well their children are doing at school. One friend emailed me about her almost four year old daughter, and wanting to start using curriculum at home. I used to homeschool Emma until last year, although school is going so badly that we have had to homeschool again recently as I advocate with the district. Anyway, her child is flourishing, needs more stimulation, etc. And I was mad and angry at her request. Isn’t that awful of me? I knew it was wrong, and I should be happy for my friend, but I could not help but be angry. I HAD to homeschool. I would love for my daughter to be able to do things without me constantly coaching her as well, again and again and again. I would love to not have to set up play dates and oversee every part of them, trying to coach Emma in her play, while being grateful for some family for letting their child come over. I probably sound horrible to you. I love Emma and would do anything for her, and will always continue to do anything for her. I do love my friend as well, but I often find myself isolating myself because it hurts to hear all the very regular stories that everyone has to share, while mine are always so much more urgent and dramatic. I do not have a story about Emma sleeping over her friend’s house, or coming home from school with stories about her friends. I too hold out for that miracle, and will always hold out for it. Without that hope, I would probably go even more crazy than I already have become. I hope you do not think poorly of me after reading my post. Sometimes I am ashamed of my feelings. guilt has become such an integral part of my life. I will continue to hope for that miracle for your Emma as well. Fingers crossed, toes too…..we will hope !
Not only do I not think less of you, I actually think what you’ve written is incredibly honest and what almost every parent I know has felt, whether they have a child with autism or not. I have a friend with two neuro- typical children who feels envy that her sister’s kids are excelling in school while one of hers needs a tutor. What you’ve described are natural human emotions. I don’t think many of us can say we are immune to these kinds of feelings. All those feelings of shame and judgment make us feel even worse. Just know you aren’t alone, Kelly. Most people feel some version of what you’ve described. And by the way – just because we feel things does not mean we act on them as is evident in what you’ve written. A friend of mine said to me the other day – “I just learned that my feelings aren’t facts! It’s such a relief!”
Thank you for your words. I reread them twice today…..one of those days. I have to take Emma in for a 24 hour EEG tomorrow. One doctor thinks maybe she is having mini seizures and that is causing behavioral problems, communication and learning problems, etc. In addition to autism…..again, maybes. But if I did not look into this, if a medicine could stop seizures and help her, then I could never forgive myself for not investigating it . Thank you so much for your reply.
I am thinking of you, Kelly and hoping all goes well with the EEG. Our neurologist believes many of our kids on the spectrum have mini seizures all the time, which contribute to their issues of relatedness and learning. Good luck and let me know how it goes. Sending you both hugs. XXX