Autism

This was originally posted May 4, 2007...






For those of you who follow the blog, and/or know me and my family, I am sharing this bit of info. Just recently diagnosed with Autism, our son Aaron is really making strides with his therapies. I submit this information on the blog because I feel that there is some bigger reason for this, and that the links between Craniosynostosis and developmental delays are probably stronger than we know. I usually have a lot to say, but on this topic, I'm speechless. All comments are welcome.

Oh, I do have one big thought at this point... I am so grateful for Early Intervention and all of the services they offer. But, I can't help but wonder... Isn't it a little creepy that the government gets involved in the developmental conformity of children?

And now...



He went to a birthday party, enjoyed it, and even let the clown paint his face!

He has grown so much... talks a mile a minute... can tell you anything you want to know about trains, levers, pulleys, axles and inclined planes. He is in school 12 months/year, and is just blossoming before our eyes. We are so grateful!

The golden prison (new curtains)

As I thought about writing this post, I vacillated between... "No, I can't write that!" and "Yes, I absolutely should write that!" While this is a blog anchored in sewing and creative subjects, the point really is the bigger picture thinking that goes along with it.

After all, "Here are my new curtains" risks being about as compelling as, "Have you met my cat? Isn't he cute?"

(No offense to cat lovers out there... I know what it is to love my own pet... well, you know what I'm saying...)

So, after waaaaay too much thought, I have recently put up the new curtains I made.
Whether you love them, hate them, or feel nothing in particular, they cast exactly the golden glow I was going for, and add a warm hug to our living room.





My Autistic two year-old is making incredible progress with his therapies. Every day, an army of therapists march through our home, helping Aaron to snip Play-Doh with scissors, string beads, put puzzles together, balance and walk on a row of thick beams, develop the skills to pronounce the words he knows, pay attention and follow directions, and so much more... He is truly a different child than he was when we started in April. He looooves being read to about as much as his sister did at his age. (We are about 20 books into the day already... no, I'm NOT kidding)

So, with all of these therapies, my opportunities to leave the house for any recreational reasons, are limited. I have started to research babysitting options. Okay, since Aaron has significant safety awareness issues, tends to choke and gag on food if not closely supervised, has considerable mobility issues, and has sensory problems that can set off random tantrums, we would really need someone qualified to deal with that stuff.

For any quality person to take on such a job, money would be a motivating factor, and she would need to have a regular schedule. Problem is, who would be qualified, willing AND only need part-time work? The kicker, is that she can't be elderly, because she has to be strong enough to physically handle Aaron.

I would also have to have the patience to train such a person, take her on in the Mommy's helper role until we were both comfortable, AND make sure she knows CPR and the Heimlich maneuver... well, it is a second job for me, too!

I hung the curtians up before hemming them to check the "feel", and asked my 6-year old, Nadine, if they looked a bit crooked. "Yes," she replied, "and perfect."



My husband worries about any stranger caring for my son. I understand that, but every single person you've never met is a "stranger". All of Aaron's therapists were once "strangers". We have to start working on involving someone else in our lives, before I go stark raving mad...

So, in the past few weeks, being hit with the realization that Aaron will require special supervision for years to come, most likely, started to scare me. So, we were in a fabric store, and I saw the striped sheer fabric with the gold bars. I chuckled to myself, and thought it would be the perfect addition to my "golden prison". I hope there is a person out there who can really help our family, giving me a break to just take a walk by myself, have a cup of coffee by myself, go to the movies with my husband without requiring the kids to be asleep... you know... real life.

So, as Nadine has reminded me, our life is crazy, busy, demanding, complicated, and yes... "perfect".

Subscribe in a reader Add to del.ici.ous

More heart projects...

The therapists who come into our home every day to provide therapy for our son are just the best... To show appreciation, since I have so little time, I think for a while and then give them gifts that are unique, and based on something I know about them.

For Aaron's occupational therapist, I made this bag...



because I know how hard it was for her to find suitable bags for toting around all of her equipment. It is large and durable, with padded straps, and a zipper that will allow the bag to be opened entirely, if she chooses to spread her things out on the floor. It also has a drawstring top for easy and secure closure.

Our speech therapist talked about a special purse her Grandmother made for her when she was a teen. She no longer wanted to use it as a purse, but it was important to her history, and she wanted it near her, and usable.


I turned it into a bolster pillow, with a potpourri pocket, so she could fill a little satchel with lavender (which her grandmother loved), and she could always have it near her. I figure, even if it doesn't go with her decor, she can use it as a casual sofa "huggy" pillow or something.

A diet that works! (Literally, the happiest days of my life)

Destiny grants us our wishes, but in its own way, in order to give us something beyond our wishes.

-Goethe



I've been a bit distracted from writing any sewing posts lately, for reasons you will soon understand. I am, quite literally, experiencing the happiest days of my life. If you are a friend or family member, you already know why!

Last week, I was feeling like making some more interesting foods, and I decided to make falafel (which I love). Because my son, Aaron has so many food sensitivities and sensory issues, the only way I can control what he eats, is to cook it myself. I had a suspicion that falafel would be something he would like. Turns out he does, but that isn't the main reason for this entry. On my search for tahini paste, I popped into a health food store, with a sign that read "Gluten-Free products".

So yeah, whatever... I've heard all the crunchy granola-types espousing this gluten-free diet, but not understanding what gluten is, or why a special diet is supposed to help some autistic and ADHD children, the information just rolled past me. I've seen a few moments of Jenny McCarthy hawking her book on Oprah and other shows, talking about autistic children and their diets, but after tossing her cutesy child-rearing books in the trash in a fit of rage a few months ago, I didn't really care too much about her opinions. I also have almost NO time for TV these days, but I guess it made me a bit curious.

Well, I asked about this gluten-free philosophy (which no doctor, or any respected professional had ever mentioned to me), and the heath food store worker/owner? explained exactly why a gluten-free diet might be helpful. He suggested I simply replace the gluten products Aaron currently eats with gluten-free versions, and see if there's a difference.

We started the diet on Monday. Aaron was different on MONDAY. In more ways that I can even list here. Call it coincidence, magic, whatever... I'm just grateful. Naps that last two and a half hours... UNHEARD OF before this week. We have never seen my son nap longer than an hour or so EVER... Sleeping through the night with no 4 AM screaming... He is calm, peaceful. He knew one speed before this week -- and it was RUNNING! Frantic purposeless running has stopped. He will let me read him a book. He is not flailing, crying, screaming. It is like this diet peeled away a veil, revealing this sweet, loveable bundle of a kid. His bowel movements are different, his ability to pay attention, his steadiness on his feet, his tolerance level for different textures and changes... I can take him out with me, and he is completely cooperative. This is only day four, and he is absolutely a DIFFERENT child!

Since I've been on this cooking and health-food store binge, it just so happens that the meals I've made over the past week or so have been in the vegetarian or vegan category. The unexpected side effect is that everyone is in a great mood, and sleeping really well. We are all waking up early, with lots of energy. It makes me think about how much our diets affect every aspect of our lives.

So anyway, I'm just grateful. It is like giving birth again! And I've gained about 2-hour block of quiet nap-time in my day, that I can use for a little work, writing emails, whatever...

Recovery from a bad mood... there are other forms of currency

We all have our crosses to bear, our challenges, our private struggles...

So, now that it is in the past, I can explain yesterday's bad mood. This is fairly off-topic, but I feel moved to write it, since it may help anyone out there who finds something useful here, or feels moved to say something that may help me!

The need to earn a living and keep things going often distracts us enough to force all of these little precious moments to the bottom of our priority lists. Sometimes things just come to a head, and it feels like your life is exploding in one big blast. In reality, it can just be the way you FEEL about an event that is truly minor, in the grand scheme.

Just to set the scene, a day in my life typically goes like this:

6:45 - Everybody up!
7:35 - Take daughter to school, and hubby to subway
8-10 - Breakfast, showers, misc.
10:00 - Son has Occupational therapy (3 days)- I participate
10:30 - 2:30 - Son play, nap, lunch, I make phone calls or organize
2:30 - Daughter home from school
3:20 - Son has physical therapy (2 days)- I participate
4:15 - Son has speech therapy (3 days) - I participate 2/3 times
5:00 - 7PM Son has ABA therapy for 2 hours(5 days)- I don't participate
5:00 - 8PM Homework and dinner happen during this time, followed by son's dinner
8 - 8:30 Son goes to bed, daughter has quiet time with Daddy
9-midnight and/or 3-6AM - laundry, my own work, organizational stuff, tasks, whatever

*note: All therapies happen at home.

This past Tuesday, Sept. 11th, I turned on the TV, and the endless coverage of the names being read was a bit of a downer, so I turned it off...

Let's go back in time. Here's the history of that day in 2001 for me.

On September 11th, 2001 I was working full time for a legal publishing firm in Manhattan, and my hours were 11AM-7PM because I was in charge of a west coast territory. My typical morning was to rise at about 7AM, work on my own business (As You Wish), for a few hours, and leave to hop on the subway to work at about 10:20. I was 8 1/2 mos pregnant, but feeling healthy and energetic.

My husband left for work at about 8:45, getting on the subway to head downtown to work. His job was very near the World Trade Center. I turned the TV on at 9:14 (we had satellite TV then) and saw what that day was becoming. First... the "What? A plane crashed into a building?", then... "another plane?"

I called the job and left a message for my boss, saying I was taking the day off, since I knew transportation would be screwed up, and I had an OBGYN appointment that afternoon... called the office and spoke to a coworker, until the first tower fell, and everything went nuts. The days following were a blur - my husband's office was shut down for a time, I was having false contractions, I was worried about the future, and my daughter didn't seem to want to leave the womb. My brother was helping clean up the WTC site, and my nephew, who was in the military at the time, was cleaning up debris and body parts at the Pentagon.

In the weeks, months and years that followed, I have truly become aware of how connected we all are, and how wonderfully generous and honest people are. I have really felt the heartbeat of my native city ever since, in a way I couldn't really feel before.

Skip to six years later... our daughter is a bright and happy almost six-year-old,


and our son is a rambunctious 2-year-old,


my business has grown, my husband now works in a renovated building right next to the WTC hole, and we are all living with the awareness, but not daily fear, of terrorism.

I want to remember that day, but celebrate the fact that things have changed so much since then, so I decided to think about my glove project a bit. I was really happy to think that 6 years ago, I wouldn't have thought that my day could be spent loving my kids and working on something as simple and unnecessary as a completely hand-stitched glove. I was just feeling really thankful - for everything.

My daily schedule is challenging, to say the least, but I have it under control, and the only projects I can accept, are the ones I can work into my life without too much trouble.

I was appreciating the freedom to be a bit silly, and had finished a small project for a client who greatly appreciated it. It was a "heart project", as I call them -- the kind of project I would have happily done for free, since it meant so much to the person who commissioned it. She told me she loved it, and was very happy.

So, Tuesday was a good day.

Wednesday, I went to see a broker for a new apartment. We live in a house now, but we need a place that is handicapped-accessible (NO STAIRS!), since my son has special needs, and he is getting to heavy to carry everywhere. Saw a great place.

Thursday (yesterday), I had to run some more paperwork over to the broker's office, and was hoping the broker would meet me outside, but since he didn't answer his phone, I had to traverse a steeply inclined parking lot, with my son on my hip, and no handicapped parking! Exhausted and sweaty, I get inside, and am told that it is no longer available. Incredibly frustrating, since finding handicapped accessible places in New York City is a very tough prospect, and getting there to see it felt like such a waste of time, energy and money.

Looked at my bank account, and the balance was unexpectedly lower than it should have been. The check from my "heart project" client bounced. No comment from my client. Good grief, I can't decide if I want to chase an elderly woman around for the money - I like to think that maybe she just made an honest mistake. This is something that I really would have done for free, if that were the deal - but it wasn't! I take personal checks because my experiences have shown me that the people who approach me for projects, and talk to me heart-to-heart, are honest, and I have NO TIME for extra stuff these days. It is just faster and easier than anything else.

I had an unexpected charge on my account as well, which I had made days ago, but forgot about. The charge went through, but I was charged for the overdraft it created, so now I have actually PAID to make that "heart project"!

Feeling frustrated, I start yesterday's blog entry, stating that I was in a miserable mood.

Yesterday evening, the broker found a better apartment, same location, better price, better space, better configuration. We put in the paperwork, so if all goes according to plan, it's ours. Yay!

My son starts babbling excessively. Enormous progress with his speech. No idea what he's saying, but it is clear -- there are words in there!

There are new posts on my guestbook from my Dad's cancer blog, written years ago, telling me that the site has helped them. Even now, people dealing with cancer and losing loved ones are finding comfort in it.

A package arrives in the mail, and it is a lovely lunchbox and bookbag for my daughter, courtesy of my mom-in-law. My daughter loves it, and is absolutely ecstatic!

So, small things can really make a day wonderful. Even when the $ currency goes wrong, there is always "heart" currency.

If this post bummed you out, my son and daughter both find this particular scene from Tom & Jerry hilarious. So do I. If you need a good laugh, click the link, and it out.