Getting out of the house with behaviors in mind.
My husband and I just completed another Family Skills meeting at our wild child's Autism Center. It's a 30-minute meeting with our case coordinator to discuss our goals and our daughter's achievements. What it always becomes, is a venting session for us while the coordinator listens and nods along with our concerns.
During this meeting, my husband asked if she, our daughter, not the coordinator, was exceptionally behavioral, or similar to other kids at the center. We have been feeling a bit out of control lately and we were seeking some reassurance and insight. She assured us that what we're dealing with is normal and even mild to some. Our jaws dropped and my stomach sank. It can be A LOT to manage life with a mildly behavioral child and it's heart-wrenching to think of the other drowning parents invisibly around us.
We recovered and asked why we never see them out and about, feeling so alone so much of the time. She told us that most people just don't go out with their ASD children. That obvious point had gone right over our heads. How do they life? Turns out, they don't.
At our local ASD parenting support group, the parents expressed exhaustion and desperation. We spent some time exchanging tips and addresses to playgrounds and homes that could accommodate all the odd and challenging times together.
Living loud and proud out in green spaces!
Since our meeting, we've felt uplifted. We got some bitter reassurance, but it inspired us to double down on what we know works to be sure we can continue to live as functionally and adventurously as we like to regardless of and inspired by Autism in our lives. Now, I want to share what works for us in hopes of helping other ASD families do more living and comfortably get out and about with their kids.
Get into nature!
Do your best to remove processed foods
Add fish oil to their routine
Ask your child's doctor about behavioral medication
Be firm and consistent - always follow through with consequences
If possible, have a partner when in public
Be aware of the child's mood and the setting you're entering
Not all experiences will be possible, have realistic expectations
Get into nature!
Spending time in nature is our family's favorite way to spend time away from home. This has been the case since before having Evy so it was easy to add her to the mix, and maybe lucky for us, she seems to enjoy it too. If your family is not terribly outdoorsy, this might be an awkward or uncomfortable new experience. I think it's worth working on though. There are significantly fewer social parameters to manage outside, immediately relieving that stress. Try making this a part of your family's routine and see what changes.
Do your best to remove processed foods
This was such an annoying suggestion to me every time I heard it. Autistic children do not enjoy inconsistency and whole foods are inconsistent. The blueberries are sour today, soft tomorrow, and sweet the next day. The broccoli is salted today, roasted tomorrow, and steamed the next day, etc. This is not conducive to an autistic child's temperament. Chicken nuggets are always chicken nuggets, crackers are always crackers, etc. So unless you've been immaculate with food from the start, this one sucks. This takes time and is frustrating. The key is to work on one food at a time, remove and replace. Read my post, 'Food is Frustrating,' for some tips.
Add fish oil to their routine
Supplements don't have the best reputation. Basically, we just don't know how effective they are or what brands are best. However, when I made this change, within three months, multiple people close to us noted that our daughter seemed more cognizant. She seemed more focused and listened with some curiosity. It was subtle but meaningful to those closest to her. We use Nordic Naturals Children's DHA liquid found on Amazon.
Ask your child's doctor about behavioral medications
This broke my heart. I had our daughter's prescription on top of the fridge for eleven days before I tried the first dose. I convinced myself that with enough environmental changes, therapies, and patience, she'd be okay.
It was my older daughter that changed my mind. For the millionth time, I asked her to move to avoid an altercation with her little sister, and she yelled in agonized frustration, spilled the paint she was trying to use, destroying her art, and hid away in her room with tears down her cheeks. We had all, including my ASD child been run ragged by the behavioral issues, but I just expected everyone to manage. It wasn't fair to anyone and we were all miserable. In tears, I asked her doctor for help. We were given a psychiatric appointment where she was prescribed a low dose of Risperidone.
The internet was not reassuring and I didn't know anybody else using medications so I had nobody in my boat.
I was scared, overwhelmed, dealing with years of difficult decisions and behaviors and I felt like a failure. After I finally felt able to give her the first dose, I checked on her compulsively for hours and didn't get any sleep. Then, after less than one week, the behaviors declined. It was noted by family, her therapy center, and her doctors, and she was happier. She was no longer in a chronic state of overstimulation doing things that upset her environment. Things are still not perfect and she is still very much autistic, but I know that we manage better as a family and as individuals after beginning the use of medication. This is a personal and medical decision, but for our family, it has helped.
Be firm and consistent - always follow through with consequences
Like everything else here, this isn't terribly fun. For long-term success this is essential. For ASD children, routine and clarity is vital. first/then statements have always worked wonders with our daughter, so when we enter a situation, we go from moment to moment with first/thens on overdrive. "First we open the door, then we go inside." Recognizing that our ASD children struggle to anticipate and generalize means that, especially in highly stimulating situations, we must metaphorically, and literally, hold their hands, step by step. Over time, when routine is developed, less of this is necessary.
If possible, have a partner when in public
I think this is the most helpful suggestion here. Perhaps it's one of the harder suggestions too. With a partner you can mingle while the child is occupied, you can take a breath when you need a breather, you can take turns finishing a meal, or helping the child manage theirs. Having someone who's in the muck with you will help you both feel less overwhelmed. Camaraderie. Having a partner who understands the child's needs will also provide reinforcement to manage social expectations and behaviors. Your partner options can be significant others, uncles, aunts, grandparents, understanding friends, PCAs, nannies, etc. Do not back yourself into a corner with one supportive person. Let others know that managing alone is not an option and be clear with what you need as support. Loved ones truly do want to help where they can.
Be aware of your child's mood and the setting you're entering
I cannot stand making a plan and then backing out last minute. This grinds my gears and physically hurts my gut. If I say I'm going somewhere and doing something, I really try hard to follow through. So, it's terrible for me when I have to duck out of an event or activity because my child isn't feelin' it. I used to offer treats or think because this activity is fun or she generally likes it we'll be fine, but I have learned. So I no longer try to force her to tough it out and make it work. She just doesn't have the capacity, so I work hard to keep her balanced, but if we're having an off day, we settle in and stay home.
Not all experiences will be possible, have realistic expectations
Even if you do everything here, and all your own hacks, there will still be things your family or your child cannot manage. This is to be expected, and it can be disappointing. Some of our most disappointing losses have been weddings, plane rides, public school, and birthday parties. Though you will have some restrictions, and your outings will be childcare intensive, I do recommend making your best efforts to take your child along when and where you can. This will help your child attune to social settings and over time have a greater social range. It will not always be so intensive. There is only so much a child can learn at home and in therapy, real-world practice is so worth it, in my experience anyway.
I'm rooting for you wherever you are in your ASD family journey!
The information provided in this blog post is for general informational purposes only and is not intended as medical advice. Always consult a qualified healthcare professional for medical concerns or before making decisions about treatments or therapies.
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