A reader writes:
I found this site because I am so desperate these days and needed to see if anyone else has hit the bottom I have. My son, now 14, is severely affected. His needs are growing each day. He eats constantly and I am the only one who does the cooking for him. He is allergic to so many foods and is sick frequently with staph infections (everything goes in his mouth or is licked), and ear infections and today allergies. Some days I don't know how I will get food in the house.Like so many of you, my "friends" disappeared when I had to be running from evaluation to school district battles and operating a home program. He never slept until I begged his pediatrician for sleeping meds. when he was nine. He still does not sleep regularly and it has caused me to gain a tremendous amount of weight and feel disoriented.
He is not usually aggressive and is a love bucket, but I have only had one night away from him since he was born due to having no family and no respite people who can handle wiping after BMs, changing diapers at night or feeding him constantly. I cannot leave him behind. I now try to just get through each day coordinating all of his services and trying to put together a plan for the near future with supported living.
Depression kills you. I have developed two autoimmune disorders and look like someone I don't recognize. How many of you eat when you can and have had to watch as your child urinated in a public setting or had to hide behind a bush for a BM because there is not bathroom facility nearby? At least more people are becoming aware and are more understanding,but the stares from other children as he grows so big and still has the cognitive ability of a 2 yr. old can make you so sad and, sometimes, angry. At this point, I am trying to sleep more, even if it means he swings a few feet from me. I just want some time to laugh and not have all these responsibilities ALL of the time. Isolation is so cruel.
The life the commenter describes is overwhelming - and while I hope few readers are as isolated and unsupported as she is, I know that many are struggling with similar realities. If you are one of those parents, I hope the resources listed below will help. If you are some who has dealt with similar feelings and can offer help or hope, I hope you'll share your thoughts and ideas.
Resources for Struggling Autism Parents
Respite care is care provided for your autistic loved ones by professionals while you, the parent and caregiver, take a well-deserved break. Find out more about how to find respite care.
Coping with the Stress of Autism: When to Find Professional Help
Coping: Depression and Mothers of Children with Autism
Grants for Families Living with Autism
Many families wonder whether they can write a grant proposal and receive funds to help them manage the financial challenges that come with an autism spectrum diagnosis.
Share Your Experiences and Insights
What Helps You to Help Your Autistic Child
Oh the irony. The link for the respite care network on your linked article is broken.
I have an aggressive child and I have tried to find respite care for years now. I am willing and able to pay for it myself; I just need help finding people. We are eligible for a raft of state-funded programs (autism division, DMH, medicaid programs for kids with behavioral issues, etc.) but no one will send us someone who will do anything but call the cops if there is an incident of aggression. Oh, and all the state funded programs require that we be in the home when the caregiver is there.
The broken link says it all, unfortunately. My heart goes out to the mom who wrote in, and all I can hope is that our society finds a way to support families like hers so that they can stay together long-term with real supports.
I am so so sorry to hear of all that you are going through!! Are there any local autism support groups near you? If you could find other parents with similar experiences, that might be helpful.
My son was not toilet trained until about age 11, when we discovered the GFCFSF (gluten-free casein-free soy-free) diet, digestive enzymes from Houston Nutraceutical (www.houston-enzymes.com), and probiotics.
Autoimmune conditions run in the family of many people with autism. Autoimmunity may play a role in autism. It’s hard to find help and answers, as modern medicine these days is rather close minded, and alternative medicine for autism is kind of new and it is hard to tell what will help a particular child. But it’s worth looking into biomedical treatments, some of which are expensive but some are not. For example diet, enzymes, and probiotics are reasonably priced and do not require a doctor’s care.
Some web sites I have found helpful (I’m taking off the “www” so that the comment won’t get automatically get snagged by security):
tacanow.org/family-resources/
gfcfdiet.com/
kirkmanlabs.com/ (good quality supplements/vitamins)
houston-enzymes.com/
DAN! doctors, and some mainstream doctors such as Dr. Timothy Buie and Dr. Margaret Bauman, say that when gastrointestinal issues are addressed there are sometimes big improvements in behavior. Many parents and doctors cite improvements in behavior, communication, and cognition with dietary intervention. When I saw Temple Grandin speak about prescription drugs for autism, she recommended trying the GFCF diet before trying drugs for behavior, as in her experience talking with so many people around the world, diet sometimes helps a lot.
My heart goes out to you and I wish you all the very very best. May you find good help!
Mamacate – I am so sorry (not to mention embarrassed) about that broken link. I fixed it in the article – and here is the proper link for the National Respite Network!
Best,
Lisa
Hi Struggling Mom –
Your story is a familiar one. My Internet heart goes out to you. Some of the things that might help have already been mentioned:
1) Find a group of non internet people in your area that can understand what you are going through. I don’t know why it helps, but it can.
2) Have you tried any biomedical treatments? They don’t work for everyone, but they do work for some. It sounds like you’ve tried some dietary changes already, if you feel they are important, they probably are.
3) Have you considered medications? It’s a difficult decision, but there are instances where they may be able to help.
4) What ABA or speech therapy have you tried?
Also, Lisa, the formatting on this page is horrible for me. 1/3 of the letter is beneath banners and whatnot.
- pD
PD – I have exactly zero control over how my work appears on the site… and no involvement in advertising purchases either (wish I did!!).
Lisa
Hi -
As a parent of a child with multiple food allergies, GI issues, and Asperger’s Syndrome, I wanted to touch on the food allergy issues that you mentioned. Cooking everything from scratch can get exhausting, and a child (let alone a teenager) with allergies or GI issues may have malabsorption problems that cause them to eat non-stop in an attempt to get enough nutrients.
I addition to seeking respite care so you can take care of yourself, I would encourage you to have your son evaluated by a GI doctor and/or allergist who specializes in food allergies. It sounds like his medical problems add to your family stress and his ability to function.
There are several programs around the country (the LADDERS program in Boston, for example) that have GI doctors who specialize in treating patients with autism.
My husband’s step uncle’s wife, no blood relationship, just marriage, brought her two children over the other night, both are ASD ,a boy and a girl. I wasn’t exactly prepared for company, yet, having them visit turned pleasant. I do believe, having people around ,even if your laundry is unfolded on the dining room table (and worse) ,can help keep the depression at bey. We laughed when I said, “would the kids like a snack”, she said sure and ran to the car for the cooler. Of course they would only eat the familiar ,so she brought it..one thing I’d never thought of..yep better than a meltdown , “I’m hungry ,I’m hungry”.. While of course you need to address the physical issues, the psychological ones, as well, it’s important to keep socially involved. BTW, with five of my six being boys, we’ve had more than a few “tree stops”, and inappropriate behavior isn’t limited to ASD. There are a million things you can’t fix, but ya’ better fix yourself, you deserve daily happiness, and you “must” make that a priority above “daily” chores. ..so get social! I know it’s hard to keep friends, even relatives, but you have to “activate” the few you can identify as possibles and try. Don’t expect not to get hurt a few times, you will, but most of the time it’s a lack of understanding on “others” part, and they can adjust, too. I remember one friend, I met her at a birthday party, her son, 12 ,nonverbal, not potty trained, robotic, would roam during her stay, anywhere. She would heads up the host, and say “do you mind”, and I don’t believe anyone ever said, “yes” I mind don’t come”. People adjust, but you have to give them the chance and stop hiding out. For the most part, human instinct is to say , but for the grace of God, and be gracious,so give them the chance.
From someone who lives, breaths and works Autism.
Just when you think it cant’ get any better – Self Help Technique
Step One – Make a list of what you have to do and what you would like to achieve.
Step Two – Based on your findings create a daily visual plan of what you have to do each day and what you would like to do each day incorporating some time for self.
Taking a short period of time each day to prepare visual plan will help you on the road to recovery. It will help to provide time for self, control, expectation, understanding and acceptance in each other and help your son to know when and what is expected and appropriate. Visual time management should help to eliminate out of control of unwanted behaviour patterns.
This is a really poignant read.. I can’t imagine such an isolated life. I hope this website about autism care in the UK is of help to people here, especially anyone in a similar situation to the one described above.