I am a strong believer in special diets for autism. I am not sure that they work for all of the reasons that many folks claim. I have believed for awhile that eating good nutritious foods, removing sugar, dyes, and preservatives has had a huge impact on my daughter. I can see it. Again, I am not quite so sure some of it is because of the reasons that people state, but I’ll take it.
We did the Gluten Free/Casein Free Diet (GFCF) to begin and progressed to the Specific Carbohydrate Diet (SCD). We stayed on SCD for a couple of years. We decided to try easing back into GFCF since this would expand food choices. All good, EXCEPT, we have consistently seen potty training regression when we go from SCD to GFCF.
Nothing else has changed. My daughter will be 100% independent potty compliant on SCD, and regress within a day or two of expanding to GFCF. Rice and Potatoes look to be the main culprits. I am perplexed by this situation. I was doubtful at first that this could be true, but the more we test it, the more it looks to be. Any ideas what could be going on here?
The story in the news today about 8 year old Joshua Robb being missing really hits home for me. Joshua took off running on the school play ground Monday and ran into the woods. He bolted and an no one could catch him before he escaped into the woods.
Aside from the obvious issues that the school has here (it is their responsibility to keep him safe), some other interesting facts have come to light. Joshua had recently been taken from his family and was in the custody of a teacher. The reason he was taken from his parents? They were moving from their house and had tied Joshua to something to keep him from running out while they moved.
According to KABC, authorities recently removed Joshua from his parents’ custody and put him under the care of his teacher after someone saw the boy being tied to a pole, something Joshua’s father, Ron Robb, said they do to restrain him.
It was described as tethering him by Joshua’s dad at NY Daily News.
“We had to lightly tether him while we were moving stuff out of our house,” the father, Ron Robb, said.
Joshua’s dad also stated WHY they think Joshua ran. *
“We know for a fact that the reason he escaped was because he was trying to look for mom and dad,” he said.
Moving is a very stressful event for anyone. It is doubly so for autism parents, worried about keeping their child from running off and becoming another statistic. We recently moved out of a house and encountered this exact problem. Normally, our home is a fortress. You are not getting out without mom or dad. Period. This is not the case when moving. By it’s very nature, moving requires DOORS TO BE OPEN. In our case, we had the grandmother watching our daughter. One head turn later and she was gone. Start Freak Out Mode. Several heart pounding minutes later, we found her hiding on the top shelf in a closet.
Judge Not:
I don’t doubt that the realtor who reported the Robbs to Child Protective Services thought they were doing the right thing. Seeing a child tethered to anything is in general worrisome, but sometimes autism parents don’t have a choice but do something that seems abnormal. I have no idea about the specific details here so I am commenting in general,. but you would thing that someone at CPS would have the skills to assess the situation accurately. Maybe they did, again, I have no idea of specific details. I do know that Rob was taken from his parents and now their worse nightmare has come to pass BECAUSE OF this intervention.
I don’t think I have ever tethered my daughter to anything other than myself, which I know I have done when staying in a hotel room and being fearful that she would get up and leave during the night. I do, however, see how one could think this was a good idea if there was no help. Let’s hope that this story has a happy ending.
My mom, who lives with us, and who is a huge help with my daughter; had surgery on her foot today. Several re-broken toes and many pins later and she will be out of service for many weeks. She is to put NO weight on her foot for at least two weeks minimum. She will have several very interesting looking pins sticking out of her foot AND be riding around in very fun looking wheel chair. It should be an interesting several weeks to say the least.
This whole thing has also gotten me to thinking about how life will be one day without her around to help. Morbid, yes. I need to practice a little Mindfulness and stay out of that bad neighborhood.
It also brings to mind how thankful I am for our Autism Granny and Autism Grandparents in general, who often go above and beyond for their grandchildren.
Across the board, grandparents report being heavily involved in the daily lives of their grandchildren with autism. Over 36 percent say they take care of their grandchild at least once a week and about 1 in 5 indicate that they provide regular transportation for the child. Moreover, 72 percent of grandparents say they play some role in making treatment decisions for their grandchild.
In many cases, grandparents are sharply adjusting their lifestyle to accommodate a grandchild with autism. Many say they moved so they could be closer to their grandchild, while 1 in 10 report living in the same household. - Autism Reshaping Grandparent Role, Survey Finds
I feel like Paul Revere around here on many days. Like so many kids with autism, my daughter has seizures. As if autism in general was not enough, seizures add a whole new level of worry about going out in public and especially with activities like SWIMMING. You have to be on guard 24/7 and know that even then one day, that might not be enough.
In our case, the seizures never happen in the morning. This is a good thing since we can plan certain activities for the morning (swimming, flying on airplane, etc). 3 PM is about the earliest that we have seen one in a long long time. The amount of sleep she gets is also a factor. With all of this in mind, I have been playing around some with trying to statistically determine our odds of a seizure on any given day. I am not really sure what I am doing, but plan to give it a try. I am going to track number of hours and quality of sleep as well.
We’ve had 32 seizures in the last year. There has only been one day of back to back seizures and she was sick at the time which also boosts risk. So, for example. Almost no chance that she will have one the next few days after. There is a 22% chance of having one within a week and a 75% chance of having one withing 16 days.
3% 4 Days
6% 5 Days
9% 6 Days
22% 7 Days
28% 8 Days
41% 9 Days
50% 10 Days
53% 11 Days
56% 12 Days
63% 13 Days
66% 15 Days
75% 16 Days
81% 17 Days
84% 19 Days
88% 21 Days
94% 25 Days
97% 28 Days
Along with some kind of nocturnal seizure monitoring system, being able to have some idea of when next seizure might occur would be at the top of my wish list.
As an autism parent, worry is never far from one’s thoughts. My wife and I have been attending a Mindfulness group for parents of kids with special needs. It’s part of a research project and they measure our stress levels several times (saliva samples to measure Cortisol levels, blood draw, and periodic questionnaires) over the course of the six week program. The group focuses on learning various techniques related to Mindfulness-Based Stress Reduction. There’s a lot of Buddhist influence, but the gist of the training is to get us more focused on living in the NOW, which is where our life actually happens.
This is hugely beneficial to anyone parents a child with special needs. All too often we live in the past (did I cause this, what if I had done this treatment, what if I had done so and so when my child was younger) or the future (what will happen when I am gone, what if my kid wanders, drowns, is abused, etc.) Just getting more accustomed to spotting these thoughts is very helpful in bringing us back to the present. We often take something and “add to the story” to the point that we are focusing on the worst possible outcome. A saying that has been bringing me back to the present when I start down the auto-pilot path to doom and gloom is “STAY OUT OF BAD NEIGHBORHOODS.” Dwelling in the worst scenarios and replaying them over and over again robs us of the present moment, which in reality is all we have to work with.
Much like the safety instructions on an airplane that we cover our own faces first with the oxygen mask before that of our child, parents of kids with special needs need to make a real effort to take care of themselves first. Just like with the oxygen example where taking care of the child first could result in both of you being dead, ignoring your own needs can mean that you aren’t there for your child. You both suffer in the long run.
“The present is only this very moment.”
What is Mindfulness?
Mindfulness is simple: paying attention in the present moment.
Mindfulness is profound: the present moment is where our lives unfold, where our tenderness and our strength reside, and where choice is possible. It can inform our interactions at home, on the freeway, in the supermarket, and at work.
Mindfulness is kind: it asks that we cultivate compassion for ourselves and others as we move through life.
The program is visited by many individuals, ranging from those who are sick, mentally or physically, to professionals and businesspeople. The reason for this is that mindfulness-based stress reduction programs have a variety of very powerful benefits for those practicing the techniques and meditation offered. These benefits include an increase in the body’s immune system’s ability to ward off disease, a shift from a disposition towards right prefrontal cortex, associated with anxiety, depression, and aversion, to the left prefrontal cortex, associated with happiness, flow, and enjoyment. Other benefits include a different and less invasive way of healing patients with chronic pain related illnesses, a reduction in debilitating stress and the hormones that come along with it,(such as cortisol,) and an improvement in one’s overall happiness and well-being in life.
In the conclusion of “Mindfulness-based stress reduction and health benefits: A meta-review”, the 2003 meta-review mentioned earlier, we read, “Our findings suggest the usefulness of MBSR as an intervention for a broad range of chronic disorders and problems. In fact, the consistent and relatively strong level of effect sizes across very different types of sample indicates that mindfulness training might enhance general features of coping with distress and disability in everyday life, as well as under more extraordinary conditions of serious disorder or stress. Another recently published study employing different inclusion criteria and a somewhat divergent strategy also provides additional support for the effectiveness of mindfulness interventions. In both investigations, improvements were consistently seen across a spectrum of standardized mental health measures including psychological dimensions of quality of life scales, depression, anxiety, coping style and other effective dimensions of disability. Likewise, similar benefits were also found for health parameters of physical well-being, such as medical symptoms, sensory pain, physical impairment, and functional quality-of-life estimates…”[2]
Since my original post on this topic in 2008, Deaf with Autism , there have been several comments along the lines of “I thought I was alone”.
I got permission from the following commenter (Tarika.Francis) to re-post her comment as a standalone post. If any one can help, please contact her via Facebook and continue to leave comments on this topic.
The dual diagnosis ups the difficulty level substantially in getting help for either disorder. As Tarika points out, those that can help with autism are stymied by the deafness, and those that can help with the deafness are stymied by the autism. This for sure puts parents like Tarika in a conundrum.
Relief and joy! And here I thought that my son Dominic is Unicorn among Zebras. He was born deaf. Profound bilateral sensorineural. We tested the cochlear implant when he was a year old, but without success. I always suspected that he may have autism. Unlike many children, There was no regression. Besides natural changes and maturity, skills that come with normal growth, his “autistic traits” are pretty much the same that he has been presenting since his youngest days. When he was three years old, I took him into a behavioral pediatrician and he was officially diagnosed with “classic autism” based on the behaviors I described. I have been learning “ASL” on my own over the years. This is the best method for him in communication, while some schools may not agree. At school he has been introduced to the PECS (picture exchange system). AT home he stims on the pics, chews on them, and is otherwise unresponsive to the concept of the illustrations. We like Signs! We have bounced around in the public and state school system in Atlanta, GA since he was 3. There is no school in our area that has a program for autism and Deafness. He went to the Atlanta Area School for the Deaf and was placed out into a school for autism, because of his profound autism behavior characteristics (mainly the premise that he couldn’t be taught to learn with ASL because of low eye contact and focus.) Last year in in the pre-K autism program, he made zero academic progress on his IEP goals. He was in a classroom where very limited sign language was known by the staff and he continued to present very little eye contact and attention … This year he started Kindergarten. And guess what? He was put in a program for the “Severely Intellectually Delayed.” This is a very disappointing matter, as every parent has high hopes for their children. I have been told many times that anywhere he goes, a specific program will have to be tailored to him, because there just aren’t many other children out there with this unique combination. And then there is the idea of which disability do you treat first, can you treat both at the time? It has been so frustrating. This is why i want to do anything that I can to improve his behavior so that they will see that he is intelligent and with help, they can teach him. I have not found a doctor, teacher, or therapist who is able to help us with both Deafness and Autism in 5 years. The professionals who help with Deafness say they cannot because of his autism behavior. The people who treat Autism say they can not help because he can not hear……. I’m so frustrated by this!!!!! Now I am a single mother. : < If anyone else is out there searching for answers and has Facebook, please friend me!! Maybe we can share info. Tarika M. Francis
Platitudes that make normal people feel better about there problems often just don’t apply to parenting a child with autism. #1 on that list is “This too shall pass.” Um, not really. I guess this is technically true since all things eventually pass. Maybe it should be “This too shall pass, when you’re dead” although that doesn’t exactly give one the warm and fuzzy feeling of the original.
Oh, joy, I am so looking forward to getting through airport security tomorrow with a 10 year old with autism. Added to this joy will be explaining to the TSA staff about the Vagus Nerve Stimulator (VNS) implant. This will be our first trip with this device. I’ve been told by some to not even try explaining the seizure aspect and just call it a pacemaker.
We’re used to getting through with our special diet cooler, but every time is a crapshoot. One trip, they barely give us any attention whatsoever, the next you would think our last names are bin Laden.
If it were just me, I would avoid being herded through the big x-ray scanners, but I suspect it will be easier if we just submit and do what Big Brother wants us to do. Really don’t care for a meltdown at the security checkpoint.
While long since debunked, I still hear the 80% number all the time.
Many people have heard this statistic as it has been cited frequently throughout cyberspace and beyond: “Parents of children with autism have an 80 percent divorce rate, much higher than that of the general population.” Although everyone seems to quote it, including the hit television show Parenthood (see the video below), this statistic has yet to be connected with any empirical evidence. In fact, a study last year “revealed no evidence to suggest that children with ASD are at an increased risk for living in a household not comprised of their two biological or adoptive parents.” According to the study, 65 percent of typically developing children lived in a two-parent household, compared to 64 percent of children with an ASD. - http://www.autism-society.org/blog/study-shows-a-diagnosis-of.html
