Wednesday, September 2, 2009


Leigh and I are going to Baltimore on October 10th for the Walk Now for Autism walk for Autism Speaks. I'm SO excited!!

Just in case you feel like you just have to donate to the cause, because we all know that Autism Speaks is possibly the only big organization out there seeking to research what life is like for adults on the autism spectrum and what they can do to improve it, I'll life my donation website link:

If nothing else, you can keep tabs with me on how close I'm getting to that $250 goal. I know it's pretty modest compared to what some people do, but I'm trying to be oh-so-done-with the comparing thing. It just doesn't get me anywhere. I'm not some people. I'm Lydia, and $250 is plenty lofty a goal for me, here and now. So whether you care to donate or just get a little bit excited with me by leaving a comment, I'd be thrilled either way!


  1. Hi Lydia! I came over to your blog via Full Soul Ahead and I'm really glad I did. I have two girls who are severely autistic and also have seizures (and so the medication) but they aren't able to talk to me the way you can. I was really interested to read about your weighted blanket and the sensory issues you have and SO relieved that I recognised the need in my girls to have their down time. I was also interested to hear about your "loss of words" Can you tell me more about that? My youngest can talk but for some reason doesn't. I have a feeling it's a case of her being a perfectionist and by the time she has processed what's been said and then organised what she wants to say the moment has passed and it's no longer appropriate. That complicated by the fact people frequently don't give her time and keep rephrasing the first question and she has to start over again doesn't really help! What do you think?

  2. My first thought is that "can talk" at one moment does NOT mean can talk all the time. I can certainly be very verbal... but at times, I'm completely nonverbal. Sometimes, the words float around in my head and I can't peg them down. I can't catch them so that I can say them. They just keep floating. It might be many hours later by the time I get one word out that's on the right subject. Or, sometimes, I can get a phrase out that's sort of right, but not quite there. For example, I wanted to apologize to a friend I was hanging out with for being kind of disengaged one evening. I said four or five times, "We talked to people after church." What I meant was, talking to people had caused me to disengage... but I couldn't get the words together to tell her that verbally. How old is your youngest daughter? Can she type or sign or use any other form of communication? Any other form is much, much easier when I've lost my words. I especially like to type, in case anyone wouldn't guess that!

  3. Thanks for that Lydia. It makes so much sense. Bear is 10 years old and uses PECS at school but as little as possible at home! Part of the problem is me - I'm just not organised enough for her to have her voice consistently which is very bad of me and is something we are addressing as we now have a lot more help at home. Because we don't have symbols for everything she will use a symbol that most closely represents what she wants. She will choose the garden symbol if she wants pasta because it's green like the pasta box. Yesterday she came into the kitchen , saw some left over pasta in the pan on the stove and said "Pasta. Wow!" and then went and got a bowl to have some at the table. This is a huge step for her as previously she would run into the kitchen, grab a handful of pasta and run out, eating and dropping it as she went. Glimpses like that keep me going. That and I'm lucky to have autistic children who love hugs and show affection. Your post about sensory issues made a lot of sense to me too.

    I think you and Bear have a lot in common - she loves animals too, especially cats and birds.

  4. It's really hard for me when I feel like I don't have a voice. If I'm typing and Leigh takes the computer so she can show me something, I feel a little panicked. Don't take my voice! I can see how much help PECS would be. I'd love to be able to use them when I'm out and about, especially in crowded places that I tend to lose my words. I'm currently learning some sign language (ASL) for that purpose, though... so that I'm not stuck without words. If I can sign "I want to leave" and "it's too loud," I'll be much better off than I am now.

    Could you consider typing for your 10 year old? I don't know what I would do without it. 98% of my thoughts would never leave my head! You might learn a lot about her!

  5. What I have to put in place is a credit card wallet with symbols required for while we're out. Maybe you could have one with just the ones you feel you could need to get out of a situation? The trouble with signing is you need someone else who can understand you. PECS symbols have the word written down under the symbol so anyone can understand it. I'm sure Bear can read but getting her to express that she can and demonstrate it is another thing.

  6. Hi, Lydia! I've just found you via Diary of a Mom and Drama Mama. I'm so glad you're writing a blog! You write really well and it's going to help me enormously with my son, who is 5 years old and who has autism with lots of sensory issues.

    You already talked about loss of words: my son is highly verbal most times, but I can see the difficulties he has expressing himself, grabbing at the words floating by in his head, unable to get the right one. Since he has considerable fine motor problems, I look forward to the day that I can show him how to use a computer.

    Thank you so much for sharing your life with us. It's a real pleasure to meet you.

    My blog is Mama Be Good at

  7. Amanda, that's genius! So genius, in fact, that I am now the owner of a keyring of 10 phrases that I would need most often when I've lost my words. I just wrote them on thick cards and covered them with contact paper, so they're pretty sturdy. They can be thrown in my purse and come out to save me when I need them! Thank you, thank you!

    Brenda, thanks for coming by. I'm going to head over and read your blog now!

  8. Glad to return a favour! I really hope it helps.

  9. Just read your comment over on Full soul ahead - vestibular stimulation can be achieved by spinning, jumping and chewing something springy hard. You can get chew sticks but maybe you could experiment with different types of gum? Bear and her sister Scrumpy have always had different favourite ways of doing it, the current is bouncing so the trampoline is earning it's money!