20 Things I Have Learned Since My Son Was Diagnosed With Autism

20 Things I Have Learned Since My Son(1)

1. A lack of sleep makes everything seem worse than it actually is.

2. It is possible for one person to  talk for four hours straight about snakes, or aquariums, or cats. Trust me.

3. People can be really, really mean.

4. People can be really, really kind.

5. Just when I think I can’t do another day, my son does something amazing and changes my entire perspective.

6. Sometimes, doctors know exactly what we need. Sometimes they don’t. Either way, only go to a doctor that sees you as a valuable partner in your child’s health and progress.

7. My son’s abilities are far more impressive than I ever dreamed possible. I have been stunned more times than I can count. Like when I realized that he has, without even really trying, learned the scientific name for every single fish at the aquarium and every single plant at the gardens. It’s like glimpsing something sacred, something completely beyond me.

8. There is a reason for the behavior. There is always a reason for the behavior (and that reason has never once been to just annoy me).

9. Stimming is a thing. I had no idea.

10. Fixations serve a purpose. They are a valuable way for our children to connect with world. And, our kids are often wicked smart because of them.

11. Most of my grief is my own, not my son’s. Letting go of all the expectations I have about being his mother, is one of the most difficult parts of all of this. My son does not share these expectations – not even a little. So, the problem most often is me. Not him.

12. Pick your battles. I will say it again. Pick.Your.Battles. I try to just work on one thing at a time, until it is a habit, and then move on to the next. Trying to do all the things at the same time does not help anyone, and just causes stress for every single person in our house.

13. Being a student of my child has helped me learn more than any book, therapist, or website. Differences in brain function can be really hard to understand for the neuro-typical momma. The more I pay attention to how my son thinks and responds, the more I begin to understand.

14. Autism makes my life weird sometimes. For example, I found myself in an aquarium store every single day last week. Every single day, for at least an hour a visit. It feels like a bizarre way to spend our time, but this is us, living our life well.

15. You will figure out the unique things that work for your child. Lycra sheets work for mine. A quiet space, with lots of blankets in the closet, works for another little girl I know. You will find things that help, even when it feels like nothing can.

16. You will never feel like you are doing it completely right.

17. You will have days where it feels completely natural.

18. Other mommas are like a fresh drink of water. Find them, either in person or online. Ask them questions. Let them assure you that you are not the only one.

19. Prayer is always answered. Maybe not in the way I thought it would be, but prayer is always answered.

20. The way you feel when you first hear the word ‘autism’ associated with your baby is awful. But I have learned that there is good and bad, beauty and ugliness, joy and messiness – all wrapped up in that one little word. If I have learned anything, it is to make peace with it. My son would not be my son without it. And I love my son. Exactly as he is – including the one little word that has completely changed our lives.

Autism.

I never thought it possible, but somehow, rather than fighting it, I have learned to welcome it. I have learned to know it.

And I have even learned to embrace it.


What would you add to this list???

23 thoughts on “20 Things I Have Learned Since My Son Was Diagnosed With Autism

  1. Sweetness. My son with Asperger’s has a sweetness about him, and naivete about how people in the world won’t find him odd or uninteresting or annoying. He is just himself. And I couldn’t love him any more than I love him.

  2. This is one of the few places I feel safe enough to share this: I struggle so much with the idea that my son “will never”…never live on his own, never go to college, never have a close friend, let alone a marriage. The idea that he will be in some adult day care or at best some sort of factory doing a rote type work–affixing gadget part A to gadget part B. If he was “just” autistic or “just” blind. But the two of them together…

    We just had him tested for intellectual disability. The school psychologist agreed that yes, he has some major issues, but they can be attributed to his autism and blindness and not ID, so that fear has been removed. Many have the “oh, he’ll go far!” attitude, but I’m his mom. I see what he can and cannot do each and every day. The 13 year old who can’t even wipe himself. Or wash himself. So I don’t believe the others.

    How do I deal with this? How do I have the right expectations for him–not too high, but not too low, either?

  3. Oh my goodness, Tina – thank you so much for sharing this and for being brave enough to ask. I wish I had a wonderful answer about how to deal with all the requirements we know the future holds, but the truth is, I just don’t.
    Although my son is not blind, he does have a pretty serious autoimmune condition along with autism. It terrifies me sometimes, when I think of him at 25 or 30. So, most of the time, I just don’t. I try and focus on today, and only today. I try to make the best of what we have right in front of us, and pray that God will help us cross that road when we come to it.
    And when I feel really overwhelmed with all of it (and I often do), I try to just do the next thing. Not focus on all the things, just the next one. Sometimes that means only worrying about getting him clean today. Sometimes that means we only focus on food and getting him to eat something, all day. But I am learning that those are the days where I start to figure things out, where I start to be able to better help him, or get creative about other things that might.
    With your permission, I would like to post this on the FaceBook page (anonymously of course). There are 2200 other people there who get it, with tons of wisdom and encouragement. Perhaps there might be a few other mommas there who can help. Please let me know.
    Praying for you sweet momma and for your son this morning.
    Love,
    Shawna

  4. Thanks you so much for this list.
    It is a great reminder for me that we are actually not alone in all the things we have seen, felt and thought.
    Thank you so very much!
    Love,
    Annet

    1. Thanks Annet. You are not alone! I always felt that way too – starting this blog has shown me that so many women feel exactly like we do.
      Love,
      Shawna

  5. I have learnt from my daughter that ‘No’ is a complete sentence! It works really well for me as well..I use it often with other people now and don’t get talked into things that I really don’t have time for.

  6. My son is 17 and the future is quite scary. The nevers are difficult!! There is joy and sadness in each and everyday. Your list is so familiar to me and glad to hear others are dealing and living with this each day!! Thank you for sharing your list!! You have to laugh about the new “normal” we have each day in our lives!!

  7. Thank-you so much. As a mummy fighting hard for a diagnosis and for the support we all need, it’s always good to read other mummies point of view. I feel supported and not completely alone.
    My addition to the list would be, in the darkest hour in the middle of a four hour meltdown because of his stripey pajamas not matching, know it will eventually end and keep offering him support and help till eventually he will beable to accept something and eventually take some comfort in that.

    1. The middle of the night meltdowns are tough. I love that you thought to add them to the list – you are exactly right. They always end, even if it feels like an eternity. Thank you for the reminder!
      Love,
      Shawna

  8. Thank you for posting this. So many of your points made me smile, as I recognised each one. Expectations are the biggest problem for me because I’d mapped out a general outline for my son’s life in my head without even realising it! As soon as I grasped the reality of his diagnosis, I had to slowly release each of those expectations and I still have some left to go! I still hope for a sudden change in his motivation that will allow him to one day catch up with his peers academically, but I think that the only way to live a happy life is to appreciate the good stuff right now and let God decide what my son’s destiny is to be. I think your advice on taking each day at a time is exactly right.

  9. hey Shawna
    Thanks for these words of wisdom . alot i knew about autistic s a few comments gave me a new insight.I work daily with lads and lasses in this feild and i think the more feedback and insight i get from parents, carers and family the better i can do my job. I get frustrated sometime by that lack of breakthrough ?
    that one click you can get you in tune with a client ( our term here for someone with special needs ) but if i loose today i try a new tactic tommorow… so any tips are welcome ! andy !

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