As you all know, I believe that many of the negative medical, social and behavioral issues are environmental.
Because I believe that, I also tend to believe that every issue is solvable. Just to clarify, when I say “issue,” what I mean is “problem.” For example, the behavior of not sleeping in enough consecutive hours is not just troublesome and bad for the brain, it can also have a negative impact on health.
That said, when you’re dealing with autism, you’re also dealing with what I call a moving target. Things that were solved yesterday may again be a problem today, and things that were never an issue may suddenly crop up. Again, I believe that’s because of environmental factors – puberty, diet infractions, reaction to a supplement or medication, detox, etc.
And you’re going to find people – great people – who have gotten every single issue under control for their child – or at least, it appears that way. In reality, some issues may never be fully solved. It’s also my belief that unless your child is misdiagnosed and you are only seeing autism as a result of of something like PANDAS, your child will always have autism. In fact, even in the case of PANDAS, they may always have sensitivities that can trigger – or re-trigger – behaviors or medical issues.
Finally, though, it’s also true, and even likely, that there are some things you will never solve. That’s what it seems like to me with a current physical issues Zoe is having right now. We have tried everything: homeopathy, supplements, medicine, behavior modification, prayer, you name it, nothing seems to work.
What To Do When Nothing Is Working
Ok, so now what? I know that as a parent, the most troubling issues are stressing you out. These things have all kinds of consequences – as an autism parent, I’m sure you’ve thought of every horrible scenario. I know I have. What are you going to do next? Here are 5 tips on what do when nothing is working.
1. Leave No Stone Unturned
First, makes absolutely certain you have left no stone unturned. Of course, the level you can intervene will depend on your budget. I’m not suggesting you go into debt to treat your child. That can have ramifications of its own, and you might be better off leaving that money for her future. Often, though, you might not have done something that you didn’t realize. Or, your child has reached a level of independence you didn’t imagine and is now doing something new – like swapping food with other children. Be sure to thoroughly investigate all those options. For example, you might want to do an in-depth test like the ones provided by 23ANDME and similar services.
2. Find The Vocabulary
In order to make sure you’ve not left anything out, you have to know the terminology of what you are talking about. This is the time to hit up autism sites and resources, as much as possible. I recommend TACANOW, which has some amazing information laid out in easy sections for any parent to use. I also recommend you ask other moms whom you trust about the issues that you can’t seem to resolve. And do your best to find the words or lingo that is used for this or that condition. Words are powerful, and they help you to be accurate when talking with your doctor or practitioner as well as when you are researching information and treatments.
3. Find Your Tribe
It’s very very important to have friends who are going through the same thing. This week I learned that while autistic children can look and seem extremely different, the journey is very familiar to all of us. (My kid likes rocks, yours like sticks, but either way, they are loading up their schoolbags with junk they don’t need!) One such conversation this week let me know that I was not alone in my current issue – and that it had a name! (Yes, you can find the vocabulary you need from other parents.)
4. Be Gentle With Your Child
As this situation has gone on and worsened, my stress levels went through the roof. Part of that stress was because I couldn’t find the solution, and part was because I was frustrated with having to take care of this issue repeatedly. Long story short, my frustration turned into frustration at my daughter – for something that might not be something she can help. I decided to calm down and gather my wits whenever dealing with unsolvable issues. It helped me to stop yelling at her and treat her with more kindness and respect.
5. Accept Things As They Are
Of course, calming down only really pushed the problem elsewhere. I took that pent up stress out on my husband – not the best solution. That’s because I had not accepted that this was something uncurable. Really, deep down, I still believe it is curable, but for whatever reason, God is not letting me see that answer yet or maybe never. Maybe it’ll just clear up one day or maybe I just have to equip my daughter for this problem.
When I look at it like God’s will, it’s a little easier. This is just a bump that we have navigate for however long or even permanently. I’d love to say that’s just fine, but it’s not – not yet, but it can be, it will be. Being able to adapt to challenges is something I’m starting to master. I’m thankful that I have been teaching Zoe tactics for this and other issues, and that I can continue to be creative as we move through all of autism’s challenges, like speech issues and puberty and diet.
As you can see, all these responses to your stress over your child’s challenges are intertwined but none of them are going to really help you for the long run unless you have just one more thing.
Keep Hope Alive
This is the critical issue for your heart: never, ever give up hope! Yes, this is difficult but we are getting through it. Zoe is a blessing to us, and I am thankful every day for her. She has a purpose, and I fully am committed to helping her have the fullest life she can have. There is really no limit to other things that she can do – and that’s true for all children, whether or not they have disabilities.
We are all weak in some areas, some, like me, in many areas 🙂
But we all have strengths, gifts and talents that we can use to be a blessing to those around us, and our children are no different. Never let the negative parts of autism get in the way of helping your child live to the best of their abilities, and never give up hope that they can’t be a productive, loving member of society.