Another week

I did pretty well at the children's consignment sale this weekend. I took 450 items and only came home with about 175 unsold items!!! I was very pleased. The two bigger things I had sold--a portable infant swing and a Baby Einstein water exploration play mat. I had a ton of baby bottles and all my onesies and sleepers sold. I will get a check in two weeks then I will see how much money I actually made. I am now working on taking group pictures of the clothes that didn't sell so I can put some listings on craigslist or maybe even eBay.

Getting ready to get Airen to school and then Mara and I will drive to town to drop off our rent check. Cannot believe March is over!

Friday we have parent/teacher conference for Airen. We are still trying to figure out things for kindergarten in the fall. Its becoming very frustrating for us all.

Off to fight traffic into town. Have a great Monday!!

YEAH for sleep!!

Sleep is wonderful!!! I came to mom's yesterday to pick up more stuff for the consignment sale and ended up spending the night. Mom took Mara and I got 5 hours of uninterrupted sleep. It is wonderful to sleep more then an hour or two at a time. Mara is asleep on my lap right now and I am unable to fall back to sleep.

At the doctor's we discussed Mara's lack of sleep. Medically she checked out. Our doctor did say that possibly when she had RSV in February and had to do the breathing treatments that it threw her totally out of whack. Plus the fact that Mara does love her mommy. Our doctor suggested getting her back into a sleep schedule and basically let her cry it out. I am not a big fan of this so we will be reading Kim West, The Sleep Lady's book and hoping it will give us some ideas. Our doctor also did suggest co sleeping. I am not a fan of this either as being as tired as I am lately I am afraid I will roll on Mara, plus I like my bed for Doug and I only. Yes I am selfish.

We got the Saturn back. Well over our $500 budget for car repairs, but at least its running and all is good. Now Doug just needs to go get emissions done and get the registration renewed.

I will be dropping off LOTS of baby clothes and items this afternoon at the consignment sale. Probably 300-350 items. We are parting with a few of the bigger items finally--portable swing, two play mats/gyms and exersaucer. We just don't have the room in our tiny house to store all this baby stuff and we are FINISHED having kids.

Have a wonderful Friday and enjoy the weekend.

Want to wish my nephew a wonderful 3rd birthday!! Also a happy 5th birthday to my girlfriends daughter!!!

Happy WEDNESDAY

One does not know how precious sleep is until one does not get sleep.

Mara is on a roll lately and probably a record for the most hours of being awake. I spoke with our doctor's office today and I am taking her in tomorrow to see if possibly she has an ear infection. I doubt it, but we will take her in. If it were up to Doug he'd use drugs or dynamite. At this point I am just worried that there's an underlying health problem.

We dropped off the Saturn this afternoon at the mechanic. It has been slowly leaking coolant the last few weeks and figured it was just a cracked hose. Not the case at all, the radiator is split and needs replaced. Luckily our mechanic likes to get good parts off of junk cars and should be able to get us a good deal. Once the Saturn is back to running properly it needs to go for emissions and registration.

This weekend I am taking the kids clothes to a consignment sale. Already of just girls stuff I have 175 items!!! I have the boys stuff to go through and get packed in the van over the next day. I am hoping to make at least $200. The last time I did the sale I took about 100 items and made $85.

Did I mention it was close to 90 degree today!!! Yes you heard right!! Sunny and HOT!!

NO SLEEP

So my precious Mara does NOT sleep. I am serious!!! If she sleeps 6-8 hours total in a 24 hour period we are lucky. At night, at most she is alseep for 2 hours then wakes up every 45-60 minutes. I am running on nothing today. Had to go to kindergarten roundup for Airen and I couldn't answer some of the questions I was being asked as I was so tired. I am online now searching for natural sleep remedies. I just talked to Doug and told him to please bring me home the book "Good Night, Sleep Tight" by Kim West. I get her montly email and am hoping there if more information in the book to help me get Mara to sleep through the night.

Happy Easter!!!

From our family to yours, we hope everyone had a nice Easter!!

This morning the kids and I went to meet my parents at church. Airen lasted a whole 10 minutes then the music started with a full brass band and drums and guitar and that was tooooo much for him. Luckily church service is held at an elementary school so he and I went outside and played on the playground for awhile. He was happy doing that!!!

We got to Naw & Pop-pop's and Airen got to hunt for eggs. He was so excited finding the eggs. He got even more excited when he found out the Easter Bunny put Lego pieces in the eggs.

My mom helped me get some pictures of Mara.

I will post some pictures.

Excellent dinner

This evening we were able to attend a preview dinner at a new restuarant, The Keg Steak House. The shopping plaza where Doug works is still having grand openings of stores and restaurants. We got an invite and took my parents and the kids. First off this is a very classy, very expensive steak house and we had our reservations taking two kids with us. From the minute we walked in it was just perfect. The manager came right over to Airen and was engaging in conversation with him and told him he'd get an ice cream cup at the end. Airen got a pizza to take with him since he's so picky at what he'll eat. Let me just say this was one of the best meals we've had out in a long time. The food was just wonderful. We each had some sort of steak and a great dessert. Airen did get a little upset towards the end complaining it was too noisy and too dark, which it was. Mara was entertaining all around her and she too was very well behaved. Pretty much this was close to an $80-90 meal for all four of us and we paid $20 that went to a local charity. It was a great evening out!!!! YEAH Airen!!!! We are making progress.

YEAH meeting!!!

This afternoon was our meeting with our support coordinator. She brought with her a higher up supervisor who was shadowing her today and getting a feel for the needs of families in Maricopa. It was a wonderful meeting!!! The supervisor was an older gentleman with ''a few grandchildren of his own" and he had a blast with Airen and Mara. I also had Rene attend our meeting and I am so glad she was there. Found out a bunch about our school district and that it seems to be failing with the special ed department from preschool all the way up to high school level. The supervisor said we were smart to think about keeping Airen in preschool another year or getting him in a half day kindergarten program. We are applying for a state education grant for Airen to attend a private school here in Maricopa. We are pretty sure we will get the grant as no one has been denied yet. We are also looking at neighboring districts. It was also told to me that since the special ed program is failing and most likely not going to be able to meet Airen's needs that I would be able to attend another school with our home district having to pay the costs. Again something I need to look more into. We also got approval from DDD (department of developmental disabilities) to pay for summer camp for Airen. They will approve 20 hours a week for a camp. I will be able to look through the approved camps and chose where I want him to attend. This was great news for us!!! Our support coordinator and Rene have also offered to attend out next IEP (Individual Education Plan) meeting at the school and help advocate for Airen's educational needs. Again I was so excited to hear this because I've spoken to other advocates that want to charge $100-200/hour.

So all in all it was one of the better home visits with DDD and a lot was accomplished. Yeah us!!!!

Airen OT update

Airen had OT (occupational therapy) Monday afternoon. The past few weeks they have been working on learning to tie shoes. Well all of a sudden I heard this ''way to go Airen, go get your mommy!!" coming from his room. I went in and Airen showed me how he could tie shoes!!! I was so excited. Airen was so excited. We are making progress on our goals. This is huge for us because it was Airen who was the one who initiated wanting to learn to tie shoes so the therapist said sure. He has also gotten better at using his utensils at meal times and writing his name (some of you will be seeing this in cards we sent out).

Mara update

We had the appointment with the specialist at Phoenix Children's. Pretty much this doctor says that the ulcerated hemangioma is healing. I don't see it healing if its still bleeding and scapping over. We are using tons of vaseline at every diaper change and only use wipes on her bottom and a spray bottle for cleaning. Just let me tell you how much I hate vaseline. Told Doug we will give it another week and if its still bleeding I am calling the doctor back and want the laser surgery to remove it. I am concerned with infection as to the location of the hemangioma.

Last evening Airen was so excited to color Easter eggs. We had so much fun. Of course I am not sure who had more fun, Doug or Airen!!! I will include some pictures!!

Not too much else going on .

We have a 90 day review with our support coordinator concerning Airen's services. I'm thankful that we will be having another person here to help coordinate more services. Rene is from the habilitation/respite company and is a big advocate to families.

I'm Invisible

I'm invisible.

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to betaken to the store. Inside I'm thinking, "Can't you see I'm on the phone?"Obviously not. No one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.

I'm invisible.

Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clockto ask, "What time is it?" I'm a satellite guide to answer, "What number is the Disney Channel?" I'm a car to order, "Right around 5:30, please."

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again.

She's going ... she's going .... she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself as I looked down at my out-of-style dress;it was the only thing I could find that was clean. My unwashed hair was pulled up in a banana clip and I was afraid I could actually smell peanut butter in it. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, " I brought you this."

It was a book on the great cathedrals of Europe. I wasn't exactly sure why she'd given it to me until I read her inscription: "With admiration on forthe greatness of what you are building when no one sees."

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work:

* No one can say who built the great cathedrals - we have no record of their names.

* These builders gave their whole lives for a work they would never see finished.

* They made great sacrifices and expected no credit..

* The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, "Why are you spending so much time carving that bird into a beam that will be covered bythe roof? No one will ever see it."

And the workman replied, "Because God sees."

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, "I see you. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become."

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, "My mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linen s for the table." That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, "You're goingto love it there."

As mothers, we are building great cathedrals. We cannot see if we're doing it right. And one day, it is very possible that the world will marvel, notonly at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.


author unknown



Pass this on to all those moms out there who you know and love and have had a part in building something great of their own.

Five for Fighting

If you are awake or bored sometime (like me right now at 4:15am) take a look at this website. You will probably walk away learning something and having a better understanding of autism and how it varies from child to child. Its a real eye opener!!

http://www.whatkindofworlddoyouwant.com/

There are some pretty moving montages about autistic children. You will see that Charities benefit from folks viewing the video they've made. Autism Speaks is one of the charities.

ENJOY!!!

Ten things every child with autism wishes you knew

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.They may have had autism too.
The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.

Three-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on autism. She is a columnist for Autism Asperger's Digest and Children's Voice and a contributor to numerous publications and websites around the world. For reprint permission, book excerpts or to explore Ellen's work, please visit www.ellennotbohm.com .

Airen's therapies

I've had a few requests about the therapies Airen is receiving so I will list things now.

His schedule is quite full!!!

Mondays: school
occupational therapy

Tuesdays: school
speech therapy

Wednesdays: NOTHING!!!

Thursdays: school
speech therapy
respite/habilitation

Fridays: music therapy

As you can see his schedule is fuller then mine!! At least he's kept busy and enjoys his teachers coming to his home. He is making progress with each therapy.

With occupational therapy he is now using his fork and spoon to eat with rather then his fingers. His therapist is currently teaching him how to tie his shoes and he's actually figuring it out. She is also working on writing his name and using scissors.

With speech therapy, he just started twice a week and has a blast. His therapist is young and really enjoys working with Airen. She's been working on socializtion issues. They play games where he learns to take turns and follow rules. She brings new books (that he hasn't seen before) and they read stories with him retelling the story to me once therapy is over.

With music it is pretty much his fun time. His therapist here works on a wide range of areas. Pretty much she helps fine tune things that OT and speech are working on. Airen likes music and tells us every week he wants to play the guitar. With music he gets to color shapes in then play his song on the colored bells. Airen thinks that is just so ''cool''. He is finally singing along with the therapist that we can hear him and he's not just wispering.

Happy St Patrick's Day

I set this Blog up months ago with the intention of blogging. Go figure that I've yet to do anything with it.

It is 3:45 am and I am wide awake. I've been watching re-runs of "Roseanne" for the last hour or so and finally got bored of them.

Let's see what's been happening around the Fortunato homestead the last few weeks.

Last Saturday morning Airen woke screaming with an ear ache. Managed to get him to urgent care that morning and sure enough pretty bad ear infection. The doctor gave us the wonderful pink antibiotics along with a pain med. By mid week he was feeling better. Sunday Doug is still sick so off to urgent care he goes. He ends up with the adult equivalent of RSV. Again more sickness at our house. Both are finally better and hopefully the germs have left the house.

This week Airen starts spring break. Of course nothing planned for us and that is just fine.

Tuesday Mara has a followup appointment with the dermatologist at Phoenix Children's. I've spoken on the phone with the doctor a few times the last week. The hemangioma in her private area has begun to bleed and is very swollen. The doctor has tentatively scheduled Mara to have it removed on Thursday. We will get more details at the appointment Tuesday. I will be glad for its removal as diaper changes are getting more and more of a hassle with antibiotic creams and vaseoline.

As you can see our homestead is just a fury of things going on. I will keep the updates coming, I promise!!!