JAN
12

So yesterday I noticed all these bruises on my inner thighs. Dark ones that really looked like they hurt. And when I stuck my finger in them, they did. I couldn’t figure out what in the world I’d done to get them. And nope, it definitely wasn’t that.

By today I’d completely forgotten about them until I entered Jakob’s Son-Rise Playroom. Within seconds, I knew. I was sitting cross-legged on the floor, he took a running start and dropped on his knees in my lap. To quote Jakob, “ouch, my boo boo”. That hurt. The kid has very boney knees.

When he comes at me with that move, I’ve learned to steady myself, try to catch him and remain very still all at the same time. He has an exact destination when he comes at me that way, he’s going in for an “up close”. That’s in the lap, nose-to-nose, forehead-to-forehead and looking right into my eyes. He can hold this position for extended periods of time but he gets into the position in one abrupt movement. It could be terrifying if you don’t know it’s coming.

Like most things with Jakob, I’m not really sure how this began but “up close” and “far away” are concepts we’ve had a lot of fun with. Anything and everything in the house and every body part has been up close and far away. He gets it, no doubt about it. But it all has seemed to settle on the nose-to-nose, forehead-to-forehead move. It’s a greeting, it’s a goodbye, it’s a one-man party if there’s a mirror. (In addition to burnt-out lights at Target, there are mirrors…lots of them).

Eye contact is something we’ve worked on. With this move, we got it. I’m not really sure if it would be considered “quality” eye contact but he is tapped in and he’s connected.

He plays this little game with everybody and each one of us has a different little routine that we do. Some of us turn sideways, blink, wink and squint. Some of us shake, say “boo” and do a “huge shaking boom”. There are endless possibilities, really.

It’s funny to never know what’s gonna stick. We do all kinds of off-the-wall and wacky things to try to engage him and sell him on this world that most of us live in. We have to. If he’s gonna be willing to step out of his world of Autism where he’s perfectly happy, we have to make our world look like the most awesomest place to be ever.

All the things that do seem to stick have a few things in common. They’re unique, unpredictable, silly, creative, sweet and funny.

Mmmm. Unique. Unpredictable. Silly. Creative. Sweet. Funny.

They’re Jakob.

JAN
08

My favorite picture from this Christmas…Jakob and my Dad. They both like Jakob’s new hat…a lot.

There are approximately 4000 lights on in my house right now. If you count all the Christmas lights, I’m not kidding.

“Lights on” is a phrase heard frequently in our home. I don’t remember exactly when it started but it’s been at least since last summer. That’s when I remember the electric bill going through the roof. And since we put up all the Christmas decorations, it’s really been a treat. We have by far the brightest house on the block. Probably in all of Warren County.

I have yet to figure out why but Jakob is insistent on all the lights being on at all times. He will not get out of bed in the morning until all the lights upstairs are on. Every morning at 7:28, this is what he says, “bathroom lights on, big light on, hallway light on, black light on, little light on, bathroom Christmas tree light on, Christmas light on, window open, window open, Grinch light on, Sandy’s bathroom light on, Christmas lights on, big light on, Christmas tree light on, Christmas light on, Grandma’s house light on”. I’m sure I messed up the order and I may have forgotten one or two but I’m pretty close. And that’s just the upstairs. He runs through a similar and longer list for the main floor. And all those lights must be on before he’ll come down the stairs.

The Christmas trees (5 full-size) will come down tomorrow when he’s with his dad. All the rest of the Christmas stuff too. I got way too much stuff. It’ll be interesting to see how he reacts to so many lights being gone. Since he was fine before they went up, I’m sure he’ll be fine with them down. Yup, I’m sure.

We actually have quite a lot of activities we do together surrounding the lights. We spend a lot of time going around and pointing out lights that are “burnt out”. Except it’s more like “burnt ooouuuttt”…like an umpire calling out a runner at home plate. It’s very dramatic. And burnt out lights are only allowed to exist in pairs…2 lights out in the kitchen, 2 in the living room, 2 in the bathroom, 2 in the dining room, 2 in my room and 2 in the chandelier. Once again, I have no clue. But he pulls me around by my hand and says, “mom, say 2 lights” and I go through the routine with the big umpire hand signals, “2 lights are burnt ooouuuttt”. He laughs. Every time.

When a light burns out, it’s a major production. We spend a little time assessing the situation and calling it ooouuuttt. Sometimes, the sitch calls for an immediate replacement. Other times, it can wait a little bit. Today, we had light #5 in the playroom burn out. (Did I mention the lights that don’t have a name, have a number?) This was a big deal because I had no more new floodlights in the house and I was on my way to Zumba. So we negotiated a trip to Target (at 1:58) to purchase light bulbs and he was cool with that.

At 1:58, we walked out the door. (I’ll cover the time negotiation arrangement in a future post, I promise). We drove the exact route he prefers and we parked on the left in his favorite row. We got a cart and he took me straight to the light bulbs.

As we headed to checkout lane #12, which he chose from all of the checkout lane lights that were on, I mentally prepared myself for what was to come as I paid $25 for 6 stinking floodlights. There were 14 checkout lanes at Target and not all of them were open with their lights on. So here we go…”1 light is burnt ooouuuttt, 3 light is burnt ooouuuttt, 4 light is burnt ooouuuttt, Mom say loud, 6 light is burnt ooouuuttt”. So I chime in with my best umpire hand signals, “6 light is burnt ooouuuttt, 9 light is burnt ooouuuttt, 11 light is burnt ooouuuttt”. He had the biggest grin on his face as I said to all the people looking at us like we were nuts, “he’s got a thing for burnt out lights”. And the woman right behind us in line said, “I can tell”.

She has no idea…

(This post was brought to you by the low batteries light, the black snowman light, the bear light, the outside light, the garage light, the backyard light, the duck light, the corner light, the jellyfish light, the bathroom tree light, the laundry room light, the sink light, the garden room light, the moose room light, the merry and bright light and the many more lights that make our house a home…)

JAN
03

Don’t know where he gets his sense of humor…

Nothing is funnier to him than fibbing. He will point to a blue book, say “orange” then look at me and grin. He just waits for me to dramatically say “nooo, that’s not orange”. Then he laughs and says, “that’s blue”.

He’s doing this with everything. What time he’s gonna take a bath, the color of his eyes, who I am. He’ll point at me and say, “Grandma” and just laugh. And he loves it when I do it to him. I can point at him and say “Angie” and he just grins ear-to-ear and says “nooo, I’m not Angie, I’m Jakob!”

I got him good yesterday. I was listing body parts “2 eyes, 2 ears, 2 ankles, 2 knees, 2 elbows and 2 butts”. He liked that one. “Nooooo 2 butts, one butt!”

Not everybody gets it and I’ve learned that I have to let everyone in on the joke early. Yesterday when his dad came to pick him up, he pointed at him and said, “Daddy is a girl”. That one didn’t go over too well. But I laughed. Quietly. To myself.

Love that kid.

DEC
31

So I made a deal with the boss back in October that I would post two journal entries every week starting in January. Since it’s only December 31, I guess this one doesn’t count. But I was feeling a little inspired so here I am. Safe to say that inspiration to write hasn’t been a familiar feeling for me lately. It’s time and I’m choosing to be inspired.

I’m choosing a lot of things these days. Joy, misery, pain, elation, exhaustion, exhilaration, motivation, pride, self-hate, arrogance, ignorance, pleasure, sadness, loneliness…to name a few. Each and every one I have chosen and more often than I’d like, I judge myself for it.

“I should be doing better than this, I’ve done so much work on myself,” is a big one. “I’m smarter than this to let this get to me” is another. “I know better” is a doozie too.

And then I flip. ”I am doing great” and “this is such an amazing adventure”. Or “I am so blessed to have been given such an awesome opportunity to learn and experience the true meaning of unconditional love”. The last one is my favorite. I need to have it tattooed somewhere. Maybe in Chinese.

I do so love and appreciate the ability to see what I’m doing to myself as I’m doing it. Awareness is the first step to something, I think.

So here on New Year’s Eve, I am aware that I want to cry. I want to cry for how far we’ve come and for how far we have to go. I wanna cry because I’m so tired and because I’m so excited for great things to come. I wanna cry because I am so lonely and because I have such wonderful friends and family. I wanna cry because I can’t believe I’m staying in tonite and because I’m so glad I’m not going out.

The only way to know the light is to experience the dark.

We’ve certainly experienced both around here and I have a preference.

In 2011, even more than I have been, I will go toward the light.

A dear friend and I decided that a great resolution would be, ”If it ain’t fun, I ain’t doin’ it”. (That’s actually the G version…throw in a few four-letter words and you’ll really feel it when you say it)

The kicker is…anything can be fun if we decide it will be. Anything. Life, death, marriage, divorce, wealth, bankruptcy, Autism. So that’s the work…how to make every moment fun. I’m kinda hard-wired for this, actually, and I am ready for it.

So here’s to a Fun-Filled and Fabulous 2011. (A couple extra F-words would be Fun there too…)

I’ll be back in 2-3 days…

NOV
17

Ohio Son-Rise Program Scholarship Fund.

Currently it has a significant amount available for scholarships and financial aid for Ohio families who qualify with financial challenges wanting to go to the Autism Treatment Center of America for Son-Rise Programs.

There is a Son-Rise Program Start-Up the week of December 5-10.

Go to www.autismtreatment.org for information about The Son-Rise Program and the Scholarships (under the DONATE tab), if you want to register and apply for a scholarship or financial aid, call 413-229-2100 and ask for a Son-Rise Program Family Counselor.

NOV
15

Have I ever posted playroom video? Well…here’s some from last week. This is Susan, our Son Rise Outreach Facilitator playing with Jakob.

This video features two of Jakob’s favorites things right now…negotiating what time we’re gonna do things (going upstairs in this exchange) and “4 big fingers on my nose/up close/wave”…you’ll see what I’m talking about…so silly and so flippin cute…

What I love so much about this is his interaction with Susan…he’s affectionate, he’s connecting, he’s asking for what he wants, he’s being silly and laughing and he’s using his words. He’s a happy, calm, cool kid.

And I also love near the end when he goes back to isming and Susan joins him. There’s no greater way to show acceptance of a child with Autism than to join him in his world. And as always, Susan does a brilliant job of this…love that woman :).

Enjoy!!

SEP
20

2010 Autism Expo
The 5th Annual Autism Expo is less than a week away!!! You won’t want to miss this great FREE event!! No need to register!! Just drop in anytime between 10 a.m. and 4 p.m. We will see you on Saturday!!!”

We are celebrating our 5th Anniversary of the Annual FREE Autism Expo. We would love if you could email us a picture of your family to use for our “Many Faces of Autism” display. Since it is our 5th Anniversary, we are also asking if you could email us just a couple lines about how Families with ASD has helped you as a parent/ professional or your family. It could be the visits to the Autism Center, using the Autism Yellow Pages, the Annual Autism Expo, or one of our many other Families with ASD services including: free Halloween / Christmas parties for families, free movies at the Midway Theater, group outings to the Polar Express Train Ride, and Kings Island, free monthly support group meetings, the free adult classes, the Adult Autism Task Force, etc… Please email Julia at familieswithasd@yahoo.com with your jpeg and comments no later than, Thursday, September 23rd, so we have time to add them to our display for the Saturday Expo!!

2010 Autism Expo

Proudly brought to you by

Families with Autism Spectrum Disorders, Inc.

“Helping Families with Autism”

5th Annual Autism Expo

Saturday, September 25th, 2010

Live Oaks Campus

5956 Buckwheat Road

10 a.m. to 4p.m.

Milford, OH

* FREE Event for Families * FREE Admission

* FREE Keynote Speaker: Dr. Stephen Shore *

* FREE Parking * FREE Information *

* FREE Family Activities *

Please Mark Your Calendar! Come Celebrate Families with ASD’s 5th Anniversary of our Annual Autism Expo!!

AUG
29

Without a doubt, I have experienced several of these symptoms and I know of more than a few other Moms who have as well. I knew I was becoming more Autistic :)…

Beware of MASK syndrome
Lisa Barrett Mann, M.S.Ed.

Have you noticed any of these symptoms recently:

• Irritability?
• Hyper-vigilance?
• Repetitive speech?
• Avoidance of social interaction?
• Disregard for personal appearance and social niceties?

I’m not talking about your child with Asperger’s or autism. I’m talking about you. And me. And a common occurrence I’m calling MASK (Mothers of Autism Spectrum Kids) Syndrome. It occurs when a mom spends so much of her waking life focusing on her child’s special needs and fighting for his interests that, somewhere along the way, she starts to lose touch with the person she used to be. How ironic it is that, in fighting autism, many of us start to become a little more autistic ourselves.

Irritability. Are you suffering from lack of sleep? Worried about your child’s future? Worried about your family’s finances? Ever find yourself snapping at your kids for interrupting you, then feeling guilty afterwards for discouraging this social interaction?

Hyper-vigilance. Do you scan each room you enter for things that might set off a meltdown in your child, such as unusual smells or loud noises? Do you find yourself doing so even when he isn’t with you? For that matter, after avoiding those things for so long, do you find that they now irritate you, too?

Repetitive speech. Do you ever get so caught up in one subject – maybe IEP worries or your frustration with your child’s para – that you catch yourself repeating the same complaints to anyone who will listen? Have you found yourself getting annoyed when your spouse or sister tunes you out or tries to change the subject?

Avoidance of social interaction. Do you choose the self-serve lane at the supermarket and the ATM at the bank because doing things by yourself is just easier? Do you keep meaning to pick up the phone and call a friend, but find yourself too busy or distracted?

Disregard for personal appearance and social niceties. Have the cute hairdos and perky outfits been replaced by ponytails and sweats? Do you ever find yourself so rushed and distracted that it’s just annoying when a cashier or neighbor tries to make chitchat with you about the weather?

If you answered “yes” to several of these questions, you too may be suffering from MASK Syndrome.

Interventions for MASK Syndrome
While there’s no known cure for MASK Syndrome, there ARE interventions that can lessen the symptoms and help moms to live happier, more satisfying lives. And by implementing these interventions, you’ll be setting a great example for your kids by giving priority to social interaction and other activities you need to maintain your health and well-being.

Lunch bunch 3-4 times per week. Most of us live hectic lives, and working through lunch can easily become habit. Make a commitment to yourself that at least three days a week, you’re going to operate as a social human being. Go over to the food court with your coworkers, or brown bag it and catch up on the gossip in the lunchroom. If you’re at home with little ones and you share the lunch table with preschoolers, that may count as social time for them – but not for you. You need interaction with folks who are interested in topics beyond Blues Clues and Thomas the Train. So after the dishwasher is loaded, put everybody down to nap or stick in a DVD for 20 minutes, and pick up the phone and call your best friend or sister, and give yourself a dose a grownup time. (Just don’t spend the 20 minutes talking about the kids!)

One play date every other week. The great thing about play dates for moms is that you don’t have to referee them – you just have to find time for them! Sit down with your calendar, get on the phone, and schedule time to spend with friends, at least every couple of weeks. It doesn’t have to be anything elaborate. Go together for manicures or a trip to Target, followed by lattés, while Dad watches the kids. But make sure you schedule in play dates with Dad occasionally, too. If you can’t find a sitter, trade off watching the kids with another couple who has a child on the spectrum – most, I’ve found, are happy to make such a deal.

Membership in two clubs or organizations. If you don’t already belong to a group for parents of kids with ASDs, you’re missing out on great social and emotional support. But also remember that you had interests before you became a harried mom. Whether it’s decorating or reading murder mysteries, we all need some sort of pleasant diversion, and friendly folks to share it with. If you’re able to join a local support group and club, great! But if not, there is a plethora of online discussion groups about just about any interest you can imagine. A quick search on groups.yahoo.com is often all you need to get started.

If you feel guilty about the idea of trying to plan time and activities apart from your kids, don’t! How can we teach our kids that socialization is important, healthy, and worthwhile, if we hardly ever take time for it ourselves? So get pick up the phone and plan time for some fun with a friend. If you won’t do it for yourself, do it for your child.

P.S. While MASK Syndrome to date has been found to be most prevalent among Moms, many dads are susceptible to similar syndromes. So, Dads, don’t feel left out, but take heed.

Lisa Barrett Mann, M.S.Ed., has a private practice in Overland Park, KS, focusing on social skills training and cognitive-behavioral interventions for children and teens with ASDs (www.AspergersInterventions.com). She is also the mother of a 13-year-old with AS and the author of More Than Little Professors: Children with Asperger Syndrome: In Their Own Words

Read more: http://www.autismsupportnetwork.com/news/beware-mask-syndrome-autism-332341#ixzz0y09ohfgh

AUG
23

I’m Autistic too. I’ve dug in my heels and I’m saying “no” to everything. No to straightening the house. No to organizing stuff. No to managing or taking care of anything. Big fat no’s everywhere. It’s a long list. I like it. Thanks, Jakob for showing me how to say no to things I just don’t feel like doing right now.

Even when what he wants is totally different than what I want, and he’s willing to fight for it, I love his commitment. The clarity. Way to go kid. Knowing what you really want and going for it. I wanna do that and I mean really do that. No more half-assing it.

The kid is also so honest. He doesn’t know how to lie. There’s no need for it in his world. I just spent a week at the Option Institute in a program called Radical Authenticity. I never really realized how much I lie every day. What a load I spew. And I don’t wanna do it anymore…so that’s my next lesson to learn from Jakob. Authenticity. Fun! Stay tuned…