(Sorry…I can’t get this first paragraph to be normal size)
Continuing on we go. Have we seen the progress we were hoping for at this point? No. I have been through many emotions these past 3 1/2 months, but I know I need to continue on. I included the Thinking Mom’s blog post below because I liked her #4, “Don’t stay with a provider that you aren’t seeing results from. I think you should see positive changes in your child within 6 months and I think a year and a half is a good length of time to give a provider unless they are significantly healing your child.” I do trust the treatment plan our DAN/LLMD has in place for Jackson, but at the same time it’s discouraging that we haven’t seen any progress in Jackson. I am patient and following his protocol exactly, but I don’t want to be wasting our time and money if I’m not seeing results.
I have been working to heal Nick for almost five years and he is not recovered so it’s a logical question to ask why I think you should listen to my advice. That’s exactly it though – I have made every mistake in the book and I want to spare you the trouble. When I first began biomed in 2007 I could hear faint conversations in the distance about children who were recovering from Autism. In 2012, recovery is becoming frequent enough that you couldn’t blame a mom for feeling entitled to it. I have always harbored a suspicion that there is another Autism mom, one smarter and more organized and more up on the science, who would have healed my son by now. Mountain Mama calls that falling into the trap of the mythological “Martha Stewart of Biomed”.
My motto from the moment of Nick’s diagnosis has been a quote by Zora Neale Hurston;“Jump at de sun. We might not land on the sun, but at least we would get off the ground.” In that spirit I have been trying my damnedest to heal my child and we have had successes and failures and great plateaus without change, but we just keep going.
When my daughter, Neely, was a toddler and I had never met an Autistic child I picked up an old book at the library called something like Wisdom from the Playground . It was chock full of quick tidbits from parents who had learned on the go. I loved it. So here I am setting out to do something similar. I have learned a ton in the process of healing Nick, a tremendous amount of it from YOU the parents. This list is some of the wisdom Autism parents have generously shared and a few insights I have garnered along the way.
1. Always listen to your Mama Gut! If we had in the first place, we might not be in this mess. Call it your mother’s instinct or intuition or the quiet voice in your head. Don’t work with providers who don’t value your maternal instincts about your child.
2. Talk to parents who have recovered their children. The specific interventions they needed for their child may be different than those your child will need, as our kids can be sick in a myriad of different ways, but these parents are a huge resource of information that too often gets ignored.
3. Keep an open mind. Some of the biggest gains for Nick have come from some of the humblest practitioners. Don’t get wedded to the idea that a certain big gun intervention is going to do it for your child. It may, it may not.
4. Don’t stay with a provider that you aren’t seeing results from. I think you should see positive changes in your child within 6 months and I think a year and a half is a good length of time to give a provider unless they are significantly healing your child. The clock is ticking. Mama Mac always makes a mistake here because I get attached to the providers as people and it’s hard for me to say goodbye. Also, don’t work with jerks! I’ve heard parents say that they have put up with unprofessional behavior, disorganized practices, and cranky practitioners because that particular provider was supposed to be such a genius in healing our children. I’m not sure those clinicians necessarily recover that many kids.
5. When a practitioner puts your child on a new medication or supplement ask several key questions; “How can I ramp the dose up slowly? What should this be given away from? What is the time frame I should expect to see results within? Can I pull my child off of this cold-turkey or do I need to ramp down to come off?” I think biomedical doctors are very good at putting our kids on supplements and not so good at remembering to take them off. You know you are in trouble when the morning supplements stretch from one end of the kitchen counter to the other (been there, lol, another Mama Mac mistake).
6. While I agree that it is very important to read and research intensely about interventions for our kids, don’t lose focus on the true goal; recovering your child. This is a big Mama Mac mistake. I have absorbed an enormous amount of knowledge about vitamins over the last five years including the best brands, deals, doses, what to give for what Autism symptoms but I don’t have a recovered kid. Is the goal to write a book about biomed or heal your child? Heal your kid first, then write the book.
7. Do not discuss biomed or homeopathy or any other alternative medical care you are doing with your child, at school. Period.
8. Do celebrate every single gain you see in your child with at least one person. Write them down if possible.
9. Don’t look at the lab, look at the child.
10. Have water be 99% of what your child drinks.
11. Sleep is vital for the whole family. If your child can’t sleep, make it the number one priority, the first thing that gets solved. Don’t make the Mama Mac mistake of confusing quantity over quality. Nick used to sleep a ton but not get any rest. We had to do some detective work on that.
12. Taking notes on interventions you may try in the future gives us a sense of healing possibilities. I’m reading about GcMAF right now and paying attention to theGoddess’s experiences with her son. Poppy is marinating over several choices about which direction to go next. The important thing to know is that there are more opportunities for recovery out there. This keeps us hopeful.
13. Exercise is free and probably the most underrated part of recovery. A wise mom told me years ago that every mother of a recovered child she had interviewed had incorporated daily exercise into their child’s routine. It is my go-to when we have die off. Nick is more verbal when his body is moving and I swear we have built up his muscle tone with long walks in the city, not to mention the added plus of vitamin D from the sun.
14. Give up on the idea that you will know exactly which intervention is doing what. We do not have the luxury of doing one intervention at a time. That is NIH’s job, not ours. However, keep careful notes on when you start a new supplement, medication or other intervention, or pull out or add back in a food. It will give you a starting point if your child starts to look worse and you need to figure out what is causing the regression.
15. Learn your child’s symptom profile. B.K. aka Booty Kicker said the smartest thing the other day. She said “When my son’s yeast is high he hits himself, when bacteria is flaring he hits out at others.” Develop that kind of shorthand for your own child. It is more valuable than gold.
16. Supplements are important but they will never replace real food. If the gut is in lousy shape you are just making expensive, vitamin-filled poop. The diet that your child needs will be highly individual, based on their specific sensitivities, and probably a mix of various diet protocol’s others are following.
17. When you say “I’ll never be able to take that food away from my child” or “I’ll never be able to get him to do that” I say “Who is in charge here?” Unless your child has his own money, drives and pays rent, you are in control and you make the rules. You decide what food comes into the house, what is for dinner and what supplements or interventions are part of his protocol. That said, you may need a lot of help and support to pull it off. Where there is a will there is a way, keep trying.
18. Watch your burn-out. As The Rev said the other day we have to take care of ourselves.
19. Sometimes the best thing you can say about a day is that it is over. On those days I let the people I lean on know I’m hurting, get some love back from them, and then call it a night. Tomorrow is a new day and we start again fresh.
20. Never, ever, ever give up.
Now, would you add your wisdom to this list? What is the wisest thing you have learned as you have worked towards your child’s recovery?