One month into Molly's "work" life. I'll give it an A so far.

"So how is it going for Molly?" is the question I have heard a lot this last month since she has started into her post high school life. And to be honest, I think that it's going well but like everything in Molly's life, I can't know for sure since she can't tell me.

So we rely heavily on how she is acting before and after "work" and the notes or texts home from other adults in her life. She happily runs to the bus in the morning and she happily gets off the bus in the afternoon. What happens between 8:30 am and 2:30 pm is often a mystery to me. So the smile is reasurring.

I spent a couple hours last week following Molly to one of her jobs where she and the others serve lunch at senior living building. I wanted to take pictures of her various activities so that I can create "pages" on her iPad so that she can talk about her day, who she has interacted with, and where she went when she returns home. Because right now all I can ask is "How was your day? Was it good: Yes or No?" And she'll always say "Yes". Such a positive young lady... or does she just want me off of her back like her brother does?

Foundations for Successful Living (FSL) is a local non profit that partners with other non profits to provide job training for adults with disabilities. About half of the adults served are "transition" kids like Molly: those between 18-21 years old who have graduated from high school but are still covered by state services. The rest are over 21 years old and are needing daytime activities that allow them to get out into the community, have a sense of purpose, but are not being paid for the work that they do (the families are still paying to have their kids in these programs).

FSL partners with the ARC where Molly goes and sorts clothes and takes empty hangers off the racks. She has served lunch at Seeds; the downtown restaurant where folks pay what they can or wash dishes in exchange for food. She has filled boxes at Christmas Unlimited. Not exactly sure what that is so I'll follow her there next week and get back to you. They are always looking for other partnerships that are willing to work with our kids to teach them job skills and give them something to do.

I have to say that I was thoroughly impressed with the seniors at Pikes Peak Towers and how great they were with Molly and her crew of three others.

First, Molly had to get the table numbers and put them on the tables. Not the fastest process you've ever seen as she went back to the main table to get a new number between each.and.every.table. But hey, they were there with plenty of time to spare before the diners arrived so it's all good.

Then they wiped down the salt and pepper shakers and put them on each table. One of the verbal girls noticed that a few shakers were empty and went to the main closet and got new ones. I know that might not sound like a lot to you but it was impressive to me as I think Molly would have just put the empty shaker on the table. What I appreciated about the elderly ladies that oversee the program and live in the building is that they were very patient and did not enable our kids. They allowed them to do the work with a few verbal prompts and encouragement. They would say "What comes next?" instead of telling them what came next. It is the same routine each time which is exactly what our kids like and need.

Then they rolled silverware. That was the hardest for my girl. They had a cheat sheet that enabled her to look at the picture to see what folds happened first, second and third but she had to be prompted each and every time. Hopefully she will pick that up soon on her own. Her forte is bussing tables and cleaning up. As you know, she LOVES that!

I was told that the seniors love her though one (crotchety) lady was a little annoyed by Molly's constant verbal stem. It's an "Aaaahhhhhh" kind of sound. Not very loud but very constant. I'll video her soon and post so that you can hear her. I mostly don't notice it anymore except for the times that it makes me want to scream "BE quiet!". So I told them that we use (and they can too) the visual prompt of the pointer finger to the lips in the "Shhhhh" motion and she quiets down. At least for a few seconds. And maybe the lady would be more understanding if she knew that that is a way that Molly self soothes or drowns out other noise if she is feeling tense? Or better yet can we suggest that Mrs Empathy take out her hearing aides one day a week during lunch? I know, I know....I need to take MY empathy pill, don't I?

Once the tables were set and ready, the kids sat down and played UNO for a while until the folks came down for lunch. I took off then but loved getting a sense of one of the areas where Molly participates during the week.

After the first week, the new staff caught onto my (desperate) need for daily texts to hear what Molly did that day and started filling me in.

Here is a good one: "Molly went with a small group to Crossfire where we sorted food for a food shelter. Molly spent the entire time with another client and did AWESOME. She didn't need to be reminded to stay on task at all. She seemed to enjoy the entire experience."

The other 2 days at FSL she works on life skills: cooking, shopping, money management (she can't even add so I'm not sure how that is going?), they go to the YMCA to exercise, and have talked about what to do in an emergency, etc.

So that's 3 days out of her week that are fun, productive, interesting, and busy. The other two days she gets to recycle (her passion) and have speech therapy. Will fill you in on those in a future blog.

The "typical" sibling. Autism speak for the "normal" kid

I'm positive that Heaven exists and every sibling of a special needs child will be heading that way when their sun sets. They deserve it! My 16 year old son Jack hates to have me talk about him, post about him, and rarely allows a picture to be taken. But today, who cares what he thinks? This is my day to brag about the amazing man that he is becoming. And I would venture to say that he is the impressive soul that he is in large part by having grown up with Molly as his big sister.

In his social studies class last year, they had to research a topic and deliver a 20 minute presentation to the class. Jack chose to share the topic of autism. He looked up all the facts and figures and stats about the rise in the diagnosis. He shared the signs and symptoms. And he told Molly stories. I'm not sure how many peers in his class knew that he had a sibling with autism prior to that day as he had just started in the new school district the year before. Everyone in our tiny town of Manitou knew and had grown up with Molly too but when Jack choiced into Cheyenne Mountain School District, many/most kids did not know him nor what his home life looked like. After his presentation, I went on line to the parent portal to his grade as I was DYING to know how the presentation went as all he had told me was "fine". Ugh...communication with mom is not Jack's favorite thing. So I did what all desperate mothers would do...I emailed the teacher and asked. "Mrs. _ , I see that Jack Bell did very well on his presentation as he got a 98. As you know, you have never heard from me all year as we let him navigate the highs and lows of grades without us dealing directly with you. That is HIS job. But today, I am dying to know WHAT he shared about his sister. Is he traumatized for life? Did he even talk about her or was it just the facts and figures of autism?" About 1/2 hour later my phone rang and it was the teacher. She said "Kathy, I have SO much to say that it's just easier calling you than sending an email". I loved her already. "I have been doing this for over 20 years and Jack's presentation will go down as one of THE MOST memorable of all time. You could have heard a pin drop in the classroom as the students were so enthralled by his story".

He shared how Molly has OCD over taking out the trash, putting the recycle objects in the bin, clicking the light on the refrigerator from "ice" to "water" and then heads to the basement first thing in the morning to clean Jack's bathroom while he is sleeping. She takes his towel and meticulously wipes the toilet seat, the shower, the sink until everything is dry and sparkly. Then she hangs the towel neatly up.  Jack gets up 1/2 hour later, groggily walks to the bathroom, showers and dries off.....with the towel!! He had NO idea how long Molly's little system had been going on before he discovered her! And telling her to stop just doesn't work. So he came up with a smart plan: before bed he hangs his towel all wonky so that if it's straight and neat in the morning, he knows that Molly has been there and he retrieves a clean towel. Needless to say, he goes through A LOT of towels.

The kids in his class loved that story. And so do I.

Jack has developed a patience, understanding and sense of humor that many boys his age do not have. He thinks outside the box for solutions. He sets boundaries with Molly but allows for flexibility as he knows that getting mad and angry with her is the LAST thing that will help. She will melt into a puddle if we raise our voice in disappointment at her and she will cry and rant and will repeat "No" over.. and... over and over....and over... and over until you feel crazy and want to shout "Stop saying NO!" but that wouldn't help either.

Jack has learned to notice OCD patterns and help nip them. He notices when we his parents cave on issues with Molly and let her get away with stuff...like taking a basically empty bag of trash to the garage bin that only has 2 items in it. Sometimes I'm just too tired to deal with the tantrum that will ensue...so I let her do it. Jack will chase her down and make her put it back and leave it. He is good!! I am SO done with parenting this way after 18 years :)

The miracle to me is that he has NEVER been embarrassed by her. He loves her and accepts her and would go out of his way to connect with her in the halls of elementary and middle school. He even told his high school classmates when asked if he was angry or bitter about it that he wasn't!! He said that he loves her just the way she is. Wow. Powerful. Mature. For the record, I'm a little angry and bitter.

You hear about the typical sibling feeling slighted that so much attention was given to the special needs kid because of their: outbursts, therapies, they don't understand right from wrong so the typical sibling gets the brunt of responsibilities since they do understand, chores and "just let johnny have their way", families can't go out to eat or on vacations since the autistic kid makes that travel impossible and embarrassing, there is no money left as the family is spending so much out of pocket for therapies to heal their child that the typical kid can't do things that they would like to do. The list goes on and on.

So we have always had Jack's good fortune in mind too. And in many ways he had MORE of our attention since Molly was in therapy for so many of his early years so he had lots of 1:1 time with me that a second child rarely gets. The therapists would also sometimes incorporate him into the sessions with Molly which he loved as he got the food reinforcers too for picking the right color, for running into the other room and back, for responding to his name...all very easy things for him that he got a little chip (or cookie, or m&m for). He didn't have to share sports seasons with his sister as we all came to ALL of his games. He got to choose whatever he wanted to watch on TV as she just loved being beside him and didn't care what they watched. He picks the restaurants where we go. He chooses which friends and families to include camping and skiing with. Gosh, he has WAY too much influence :)

But he doesn't have a pal to play endless games of cards with on road trips (like I did). He doesn't have someone to share stories and secrets with (though she doesn't tell a soul if he tells her anything so maybe that IS good). He doesn't get to vent to her about us and have her say "I KNOW...they are so nosy. Mom wants to know who I want to go to the Homecoming Dance with! Can you believe it?" He will be her guardian some day and will have that responsibility to manage her care when we are gone.

Jack is intuitive, he is caring, he is sensitive to Molly and notices how those are reacting around her, he is protective, he is funny and teases her, he is her biggest fan, he notices her achievements, he can imitate her sounds, he loves her, and though they have never had a conversation, they know each other perfectly!

I hope one day (soon) he will do a documentary film about the life of a sibling. He has such a beautiful, healthy perspective that I think others would enjoy seeing through his eyes. He knows a few other siblings that would have interesting perspectives too. Could you please encourage him to make his inspiring film this year?

Why?

Because he won't listen to me.

The shower: Too bad she isn't bald

When was the last time you helped your kid take a shower? I think Jack booted me out of that responsibility in 1st grade? Earlier? To be honest, I'm not sure exactly when it was but with all the other developmental milestones, he met them and moved onto the next higher level of learning. Not so with Molly. She is 18 1/2 years old and I STILL help her. Who will take over this task when I am on my death bed? Any takers?

Here is how it goes: I turn on the water to regulate the perfect temperature. As you know, it takes a delicate touch to regulate that balance of not too much hot but not too much cold. We turn the dial slightly this way, then that way, until it's that soothingly warm AAAHHHHhhhh. Molly doesn't have that finesse. She will stand in scalding water (or freezing cold water) and not alter the temperature. I have heard her saying "Ouch" from the bathroom, when a toilet is flushed in another part of the house and she gets scalded....but does she move? No. Her body will be bright red but she makes no efforts to change the temp. Which might be good as she'd probably turn off the cold water and scald herself even further?

She will wash her entire body on her own (thank goodness) but where she falls short is in the washing of her hair. She loads up a handful of shampoo and vigorously washes the same 30 strands of hair just above her forehead.  She is thorough there by golly. But for the life of me, I can not get her to wash her ENTIRE head. "Mol, you have hair over your ears, and on the top and back of your head too". We talk about this EVERY.SINGLE.TIME we wash her hair as I scrub the rest for her. I have not intervened on numerous occasions to see what happens if I'm not involved. Maybe I am enabling too much and need to back off? She for sure has figured it out by now? But alas, afterwards, her hair is disgustingly oily...everywhere but the shiny front :) The good news is that she DOES turn the shower off all by herself when she is done so I don't have to go in and prompt her to end the routine. That's a big step from before.

I have to say that I'm relieved to hear that many other parents of kids with autism face this same hurdle. Misery loves company and I feel less inept knowing they can't get their kids to learn this simple technique either after 1 million 250 attempts (give or take a few showers).

Any success stories out there of other kids on the spectrum that finally learned how to do it I'd love to hear them? Mirrors in the shower so that they can see their whole head? I have heard that there are knobs that you can buy to regulate the water temps so I need to look into that. The more that Molly can do independently of me before I die, the better!

Next up, crossing the street safely after looking both ways.

Shaggy, Scooby and the Mystery Machine

You have heard me talk about Molly's "boyfriend" Spencer  and have seen his pictures with her for every dance that has occurred the last few years. He has autism as well but is slightly more verbal than Molly is. We love him as he has a gentle disposition and a great big smile. Our families are similar in that Spencer has a younger typical sister (like Molly has a younger typical brother) who went to college last year. He has seen her move to a dorm room and this year to an apartment off campus. He is almost 22 years old and wants the same thing as he has had "Move out Party, August 31st" written into his ipad calendar for 6 months. He downloaded a picture of the apartment complex where he wants to live, brought it to speech therapy and shared it with the group. He had their speech therapist convinced that this was really happening. He has plans for who his roommate will be (it's not Molly, don't worry). He wants to move out from under his moms roof and August 31st was the big party!

But like a lot of kids on the spectrum, he doesn't shower on his own. He doesn't cook his own meals. He doesn't drive. He doesn't pay the bills. He doesn't do his own laundry. How in the world does he think that he can live on his own?

I have been worried about this big August 31st date as it approached and wondered what would happen that day when he did not move out? Would he cry? Would he tantrum? His mom Cheryl told me that she guessed he would simply reschedule it to another date in the future. But I was worried for his soul and for his sense of independence. For his hopes and for his dreams. I wanted to acknowledge this date even if he wasn't moving.  But what he did do touched me and was such an interesting approach to the dilemma that I asked their permission to share the story with you.

On the 31st, Spencer came downstairs with Scooby Doo, Shaggy and the Mystery Machine; all toy figurines that he has cherished for most of his life. With them, he had two boxes packed with all of his DVD's and Wii games (also prized possessions). He told his mom that they were all moving. "Where to?" she asked. "The basement" he replied. And that's is where they are today, neatly parked against the wall. Cheryl asked if he himself wanted to move into the basement too but he said "No". I thought that was a good suggestion on her part as maybe that was what he was trying to convey through the Mystery Machine's adventure to the downstairs?

I love that it happened on the day that HE was supposed to move. They are obviously tied together in some way in his mind and I love the beautiful puzzle that our kids are. Molly and I went over to their house for a yummy dinner and for Cheryl and me to tell them that our hopes as moms are that they CAN live independently one day (with support of course) and that we will do the best that we can to help make that happen. You aren't moving now Spencer but maybe one day......

And THEN we can create the awesome Mom retreat where the wine flows freely for all of our hard work and successes!

Today is bitter sweet.

There is no denying that I have a bit of a Facebook addiction. I adore seeing photos of friends and tracking their lives through this modern medium. I feel less far away from my east coast pals and childhood friends when I can get a picture fix and see their children grow from year to year through FB. Today these pictures are leaving me feeling down (and guilty for feeling this way) which luckily does not happen very often so please forgive a little wallowing or just stop reading now.

Over the last week, I have seen picture after picture of Molly's peers heading off to college and their new lives. I think the picture of our friends (who we met in Lamaze class) daughters' first day was the tipping point to my reality that Molly is not leaving like the others. I see their dorm rooms, I see their new roommates, I see their beautiful campuses. I recall the excitement from my own first day off to college and know that these kids have so much to look forward to. In fact, I met my best friend Jenny on the first day of college as we were put together as roommates at Guilford College in Greensboro, NC. Before I met her face to face, I recall perusing her unpacked piles in our tiny dorm room trying to make out if she was someone that I would get along with. She had a sheepskin rug. So did I! When she walked into the room with her parents, upon returning from lunch, she was wearing a cartouche necklace with her name in hieroglyphics (and I was too)! She had an older boyfriend; so did I. We stayed up late into the night talking and discovering so many similarities and have remained close ever since, even though she lives in North Carolina and I live in Colorado.

19 years ago she and her husband took a long road trip out west and stopped over with us for a week. We broke the exciting news to them that I was newly pregnant with Molly! Jenny found out shortly there after that that she was pregnant with Eliza. Our girls are 2 months apart in age but are vastly different in life experiences. Eliza is heading off to college today too. It's how it supposed to be. It was our early plan for Molly as well. And it hurts that it's not happening.

What would our daughter be like if she didn't have autism? What would her talking voice be like? What kind of friends would she bring home? Would she still like to clean up or would she be more like her brother and leave everything strewn behind her? Would she be funny? Or would she be on the quieter side? Would she share with me or keep me at arms length? Would she be an engineer or more of a party girl? Would she know what all the fashions are and fill me in or would she still be content with hand-me-downs and tshirts that have no tags? Would she be fickle with boys the way I was or would she commit to one and date him all the way through high school and college? Maybe she'd like girls? What would he/she look like? What would he/she act like? Would Molly be an athlete playing a sport in college? Would she get good grades like her dad or average to bad grades like her "social-ology" major mother? Would she join a sorority?

The "what if's" are killers and not worth contemplating. They make me cry. They appear infrequently thank goodness and yet they are a reality. I never know what is going to trigger the tears and hopefully all the colleges will have started soon so I don't need the gentle reminder that Molly is home to stay.....for a long while.

And yet.....I LOVE hearing about your kids new experiences. I never want you to not share with me because it might be painful. It is what it is and you will have your challenges too. I will do something along this journey called life that will trigger you to cry. So please don't shy away from sharing. We will weather the highs and lows together as that is what friendship and love is. And since you are already missing your college bound kids, I'll just say "Ha! I still have mine at home" :)

We love the pool!

Summer is winding down and the pool is packed with families enjoying our last few days of freedom. Today I am on the top most grassed tier of our pool in a location where I have never sat before. This is obvious as I can see Molly searching for me from her mid pool location bobbing on her typical three noodles. She dips one side of her head in the water, then other other side, and then flings her head backwards and sprays water on whomever is near her. She is oblivious. Then she looks up on the hillside searching for me. This is endearing to me. She's like a little child who still adores her mother and wants to know where she is at all times. My 16 year old typical son hides opposite of wherever I am and keeps his friends away from me too as I might learn too much if they came around. On the other hand, her neediness is suffocating. My stomach cliches knowing that she will be this innocent and dependent until the day she dies. (And now that my kids are older, how can I embark on that fulfilling career? That shall be another post.)

I give her a big wave as I see her scanning the hill and when she finally sees me she gives a tiny fast wave, turns away, and dips her hair again. She seems relieved. She migrates near other teenagers. She probably doesn't know them yet she bobs awkwardly too close to them. She makes her odd verbal stim but often the sound is muted by the loud music playing and all the other kids frolicking in the water. In years past, I would sit near the pool and explain who she was to kids who would give her an odd look. Now I just let them all figure it out :) I'm finally that old mom up on the hill reading my book and I want to savor that hard earned honor. Molly's benign in her ways as she isn't touching anyone or trying to talk to them...she just hangs out near them. Of course I'd intervene if I saw someone being malicious, and I bet the lifeguards would too as they are sensitive to Molly.

Sometimes I have a sadness as I watch her all by herself. The other kids are all playing games together. The "color game" which still baffles me why kids like to play it and play it year after year? You can't possibly hear what color that kid just said with their back to you?! They should learn Red Rover or Alligator which are much cooler games that we played in my childhood. Kids are frolicking on their tubes, squirting guns at each other, creating fond lifetime memories. Molly is the only one all by herself bobbing around. And yet....she is happy. At least she appears to be. She is in water. She is around people. There is music playing. She understands the environment. She is smiling.

We could be there for 15 minutes or 5 hours and Molly would NEVER tell me that she's ready to go. She stays in the water until I sign to her from my perch "all done". The beauty of sign language is that I don't have to walk all the way down to the pool to get her to leave. And I don't have to shout. Sign language was the first way we taught her to communicate so we all have a few signs that continue to this day: "all done", "drink" and "potty" are mainstays. And she never fights me!  I know, I know...that's pretty nice. No back talking, no negotiating, no whining.  But you KNOW I'd give anything for her to do that, right? I wish that she would one day get out of the pool all on her own and come get her towel and tell me "all done". But she's 18 years old and hasn't done it yet, so I'm not holding my breath. Because she is so fair skinned and easily burns, we can't stay all day (though I'd love to). She isn't one to go play volleyball for a little while, or come read a book, or play cards in the shade, and then go swim again. So we come, she swims (bobs), I read, she buys ice cream, we leave.

All things considered; it's a good life. Unless someone poops in the pool like today. No, it wasn't Molly.

I'm back!!

Good grief, it has been 5 months since I last posted!!?? And I had vowed to be more consistent.  To briefly catch you up I worked 4 part time jobs: personal assistant to both a neuro surgeon and a 92 year old lady as well as a DNA cheek swabber in a couple medical offices to help out Brooke in his new job), Jack's Cheyenne Mountain lacrosse team went all the way to the state semi finals for the first time ever, Molly was nominated as Prom Queen and graduated from high school so we had a big party to celebrate, Jack played on a summer select lacrosse team, our inaugural Colorado Springs Children's Hospital event was a huge success (I helped coordinate the Family Festival part and this was my 4th job), we went on a really fun two week road trip through Wyoming, Idaho and Oregon and now we are getting ready for the new school year to begin and Molly's "job" through her transition program starts. There are MANY stories to pull from during that time and I hope to do that as I launch back into life with my sweet Molly and get myself writing again. Here are a few pictures from that time.

Spencer and Molly at the Broadmoor hotel for photos

The tired Queen after a fun night

Jack was able to walk Molly in for graduation

Was very touching to us all

Climb for Courage at Air Force Academy Falcon Stadium

We love watching you play!

Stay tuned for all the exciting highlights of hours at the Social Security office to get Molly SSI, where you think you will catch some deadly illness from the throngs of coughing people waiting for hours with you, as well as all the guardianship paperwork filled out for the courts and the paperwork complete for the Resource Exchange so that they can help with services for Molly since she has turned 18. Of course they are all asking the same things too. Yes, it's quite the process once your kid becomes an adult. Paperwork, paperwork, paperwork. Don't worry, I'll throw in touching stories too, as well as a few ideas I have about community living, a children's book that she and I could do together, and how freaked out that we no longer have the teacher/para support that we have relied on for so long.