This week marks our one-year anniversary of blogging. And what a long, strange trip it’s been already. Join us as we look back and look forward this week. First, here are a bunch of things we’ve learned along the way so far, though it’s hardly comprehensive!
- There are a lot of good people in this world.
- We’re not the only people in this world who are confused, fearful, crazy, determined, or in need of a lot of support.
- No matter what issue you are facing, others have either been through it or currently are in the same situation.
- There is always somebody who knows how to do something; you just have to ask enough people.
- We are intelligent enough as parents to learn how to do a lot of stuff on our own. So are you.
- Therapists are still worth their weight in gold, and they are severely underpaid.
- Skilled, caring teachers are a divine gift.
- Don’t give a rat’s butt about those who judge you. This isn’t about them.
- Surround yourself with people who support and affirm you and your child. You have permission to use profanity with everyone else if you want to.
- This is a marathon, not a sprint. Pace yourself.
- The beginning is the hardest. I don’t know that it gets simpler, but the more experience you get under your belt, the more competent you’ll feel.
- There are too many negative messages about autism in the media, and these messages make too many parents who just received a diagnosis feel like the world is ending. We need a new message. So much good lives in our children, and autism has so many unique gifts to bring to the world. Why can’t we talk about that for a change?
- When you get a diagnosis, you feel like all your dreams died that day. In a way they did, and you have to go through the process of grieving that or you’ll go crazy. But you get the opportunity to go out and make plenty of new dreams that are greater than you imagined possible.
- There are parents who have gone ahead of us to clear the trail, and we are grateful to them for showing us the way. As you move down your own trail, don’t forget to look back and help those still making their way.
- Decide only what the next step is, and then go do it. If you sit down and try to think through the enormity of everything that you think has to be done, you’ll feel like you are drowning. One foot in front of the other is the only way you’ll get there.
- If you want something, you gotta go fight for it. You don’t get a lot of things given to you freely, and the institutions of the world aren’t often supportive.
- Too many parents are struggling with woefully bad local schools and services, inadequate help, crappy health care or no access to care, lack of availability of informative resources, little or no support, and crushing financial expenses. All of this has to be addressed. We need a better way, but we have to go make our own change.
- There is way too much unhelpful crap about autism on the Internet. What is helpful is hard to find, and often harder to use. We need to build something better.
- There are a lot of amazingly creative people out there coming up with inventive techniques for working with autistic children. I wish I had a few ounces of what they have.
- There are no quick fixes. Sorry. Anyone who offers you a quick solution is selling snake oil, and is most likely just full of it. If it sounds too good or too easy to be true, it usually is.
- Don’t accept everything everybody tells you. A lot of stuff out there is garbage. You have to learn how to think through and analyze what you read and hear, and then you have to determine whether it’s worthwhile or junk. There’s a lot of both out there, and it’s a pain to have to use up valuable energy figuring it out, but you gotta do it.
- I try to keep a positive attitude, but some days just suck. It’s OK that this happens.
- I don’t want anyone to feel sorry for us, because I don’t.
- You can’t do everything; all you can do is the best you can.
- If you feel like you constantly have to be doing something therapy-related with your child, step back for a while and just enjoy them. Never forget this is about building a relationship with your child and enjoying them for who they are.
- I don’t want autism to be an excuse for setting the bar too low for our son. I don’t want to make excuses for him. Plus, every time we’ve wondered whether we’ve set the bar too high, he flies over it.
- Never underestimate what your child might someday do. They are full of surprises.
- Wake up every morning expecting something to happen that will blow your mind. It often works out that way.
- As awful as we felt in the beginning, we’re here, we’re thriving pretty well, and we’re making good progress.
- Your child possesses amazing gifts just waiting to be discovered.
- They know more than you think they do.
- This has been the greatest challenge of our lives, but we are meeting it with an even greater determination. This is the hardest thing I’ve ever done, and I wouldn’t trade it for anything.
- The J-Man shines ever brighter and more wonderfully every day. It’s hard to imagine him being any more wonderful. He has made us better people, and we are thankful for him.
And most importantly for me, the J-Man has shown me my purpose in life. He has taken everything I’ve ever done, learned, been a part of, struggled with, and sought out and showed me what it looks like when it’s brought together and made whole. He has taken the best parts of me and helped me express them, and he has taught me how to take all the old worries, hurts, and burdens, lay them down, and keep walking onward to see what’s next in this adventure. It’s because of who he is that he could teach me all that.
Feel free to share in the comments what you’ve learned from your journey. Thanks for reading!
P.S. A bonus – check out all the things my grandmother taught me over the years that make such a difference for me now.
Posts that hopefully are similar:
- The 439 Stages of Grief
- Diagnosis Day – 2nd Anniversary Edition
- Be Aware – For Parents
- Holiday School Party – Things Worth a Thousand Words Edition
- Where do parents of autistic kids in Holland go?
- What My Hero Taught Me About Parenting an Autistic Child
- Learning How Not to Say “I’m Sorry.”
{ 5 comments… read them below or add one }
J-Man is truly blessed to have you both as his parents and vice-versa ,such a nice post .
Thanks. He is definitely a gift to us.
Thank you for this post. My family is just going through the diagnosis process with my 27 month old son. It is scary and overwhelming, and I am trying my hardest to remember that my son is still the same amazing creature regardless of any diagnosis.
Jennie,
It’s hard, especially right around diagnosis time. We did some posts about that as well, and some posts about “1 year after diagnosis.” There is grief, and as I read somewhere, “you don’t get over grief. You just get through it.” If you need to talk to someone offline from here, please feel free to email us!
Jennie – I think Mary covers it well (as usual!). The diagnosis process is very difficult for everyone. Sometimes people see grieving as a judgment on the child, but I don’t at all because it’s not. What I think we are grieving is the loss of how we thought our child’s life and our family’s life was going to play out. And I don’t think there’s anything wrong with this.
About the most helpful way anyone described it to me was like this. We grieve the loss of our former dreams, and at some point we begin to look toward the future and opportunities for creating new dreams and writing new stories. You can do both. And I’d go as far as to say that you have to get well into that grief before you can move forward.
Over time I’ve come to realize that it is my son who is changing me. He has become my teacher more than I am his. He’s taught me to look at all the hard, tired places inside myself and deal with what’s there. He’s challenged me and helped me to do things I never thought I could do. And I am by far the better person for it.
If I have any advice to offer anyone it’s that the only way forward is through it, and just make one step at a time. Don’t try to understand it or absorb it all at once. It’s impossible anyway.
Many days the best thing you can do is be with your child, look at him, and just sit quietly and breathe, even if it’s just for five minutes. Don’t think about all the things you feel like you have to do or figure out. Reflect for a few minutes on all the wonderful things about him, and do absolutely nothing else except be there.
We wrote some posts on grief that capture our emotions about those days pretty well.
Just take it a little bit at a time. There’s a huge community of parents to draw on as you need us. We’ve been there just as other parents have been in places we’ve not yet gotten to. A lot of times it feels like we’re running a relay.
We’ve learned a lot about how much goodness there is in others. If you reach out for help, people will be there.