GOBBLE GOBBLE

Nate has been doing great at school and at home. He is hugging lots of friends at school and there were no immediate concerns at his parent-teacher conference. His ABA home program is progressing as well. Potty Training is on the horizon--so look out!

Halloween sing-a-long

Nate had a Halloween sing-a-long party at school that went well. I was a little worried beforehand about having "treats' and things involved since we have so many restrictions and allergies...but everything turned out fine. They actually didn't overkill it for th epreschoolers (thank god)- so all the kiddos seemed to tolerate the singing and such.

Here are some pics of Nate at school on Halloween He wore his skunk costume from last yea since we thought he would tolerate it best. The first is Nate checking his schedule board with his favorite teacher, Mrs. Davis. The second is Nate and a little boy from his class at the sensory table. The last is a pic from the sing-a-long.

What day is it? Where am I? ..

Whew! The last few weeks have been out of control crazy. Let's see if I can sum up...

Nate had a seizure on Friday, Oct 10th (my brother's bday- which is why I will remember the specific date)- then we had the Autism Walk. Plus of course all the chaos that comprises our daily madness we call life.

Nate is doing fine from the seizure (his first in 2 years)- but along with THAT comfort goes the forever present UNKNOWN factor in all of this. Why did it happen? Will it happen again? What triggered it? Could we have prevented it? and so on.... I swear it's those questions that follow all of this that are actually worse than the event itself.

The Autism Walk was a huge success and a lot of fun too. Nate did perfectly riding in his wagon with his sister.

I will write more later this weekend..I just wanted to post some pics I took at Nate's school today. There is a bulletin board up with some Fall artwork. I love seeing my little guy's stuff up there!

Nate made a friend!

We took a family trip to the park this morning- as we do almost every day we possibly can :) - but today was different for some reason. Well, Nate took a header off the curb and has some lovely road rash on his face, but that's not what I mean. Nate was mesmerized by this little boy at the park and kept following him around, doing what he was doing. If the little boy went on the slide, so did Nate. If the little boy went tearing down the ramp, so did Nate. It was hysterical. We loved seeing it! I can count on one hand how many times I think Nate has noticed another child at the park- and not only that, but was imitating his actions and initiating "play". Wow! It was great. I can tell you we live for those seemingly small moments. In our life they are HUGE.

Look out Lance Armstrong!

HALLELUJAH!

We made it through our first day of circle time!! Yahoo! Nate has been loving school---everything until circle time. BUT today was hopefully a turning point. His teacher moved him out of the actual "circle" to give him some space--and that seemed to do the trick. When I picked him up his teacher said that she finally saw how much he enjoyed music! I had been telling her this but everything she had seen so far contradicted that. Anyway, here's hoping Nate keeps up the good work and the tolerance for circle time as they slowly start inching him back to the circle to participate.




The walk is just around the corner!! They send out a weekly newsletter and this little clip was in there on Toni Braxton...


The stars are aligned
Toni Braxton at rehearsal with her ‘show of support’ for autism.
Un-break My Heart, Grammy Award winner Toni Braxton is now appearing on the television show Dancing with the Stars.
Toni has a son with autism. During rehearsal segments, you will see her wearing her blue puzzle piece in support of Autism Speaks.
There was also an inspiring story written by a mom here in Columbus that I have met a few times at events...
Take a minute to read her story if you can.. http://www.walknowforautism.org/atf/cf/%7B2135C84C-B005-4BDB-9C86-789CDB482CBD%7D/MICROSOFT%20WORD%20-%20MY%20LIFE%20WITH%20CADEN.PDF
She has been traveling on this road a lot longer than I have--and it is so heartbreaking to hear the reality of this journey for her family.

Let there be LIGHT!

Whew! We have power again! What a crazy windstorm we had on Sunday. The power went out and it took a few days to get it back. It was quite interesting bathing the kiddos by flashlight. Fortunately, we are early risers and we hit the sack pretty much when the sun goes down so it wasn't THAT bad. We still had hot water the whole time--THAT would have thrown us for a loop if we didn't. We did have one big adventure though. Nate had breathing problems on Sunday night...he was wheezing horribly and couldn't catch his breath---normally we nebulize him to get it under control..but with no power that posed a bit of a problem. Aaron headed to Walmart in the middle of the night (they were open and had power) and bought a power inverter to hook to the cigarette lighter in the car. We hauled Nate out of bed and took him to the car to give him a breathing treatment and the inverter blew- the nebulizer was too powerful. AHHH! Needless to say we had a SLEEPLESS night- but didn't need to call 911. We were able to make it to a friend's house in the am that had power and he is doing better now.

I have included a picture of poor Neve's arm. We were doing puzzles in the playroom with the kids and Neve got too close to what Nate was doing and he took a big ol' chomp out of her. Bad Nate. Poor Neve. I try to tell myself that all siblings do this and Nate is no exception. lol. Is it wrong that I was happy that he at least acknowledged she was there? ;)

2 weeks down!

After today we will have made it through 2 full weeks of school!! That means no allergy attacks resulting in pickups! Yahoo! Nate is doing better and better in some areas, while others remain a challenge. Citcle time and music time are just way too much for him. He just shuts down and loses his mind. We are introducing these activities at home as well and hopefully the familiarity will help...I hope. He enjoys going to school though--it is so great to see him get out of the car, put his backpack on and get excited about going in the school. he washes his hands like a champ and LOVES his schedule board.
Biomedically we are chugging along. I think we have 2 more "new" supplements to start for this round..and then we will retest. I believe we are up to about 35 doses of supplements he takes every single day. I am amazed we keep it straight so well. I guess we have just gotten into a routine that works for us.
Nate has started back up at Little Gym and is doing great. This may be the last semester for him though. He is the biggest kid in his class by far as we needed to keep him in the parent-child class. The 3 yr old and up classes are kids only--and I don't think it is fair to disrupt the class by having Nate attend with an adult. Bummer. I will take the next few months to try and scout out a good fit perhaps in a special needs program.

here is some news that involves Nate's biomed doctor.....
http://www.ageofautism.com/2008/09/american-medica.html

THE WORD

We dreamed about what color hair and eyes Nate would have, what sports he would play, and what he would become when he grew up. No one dreams of Autism.

Autism affects every minute of our lives- how we sleep. what we eat, and how we spend our money. Birthdays and holidays are bittersweet. Vacations are nonexistent. There are NO days off. We have grown thicker skins yet are more compassionate, become advocates but more earth-friendly, and become every physician's nightmare while taking charge of our own heath care.

I started 2008 thinking I desperately needed to *find* more parents that we could "connect" with. Parents of Autistic children that knew EXACTLY what we were going through. Well I have met a lot. I have met quite a few right here in North Columbus. I was so excited. ---Let's just say I think I was barking up the wrong tree. I have met moms that could care less about sharing educational info. I have found moms that are such HUGE advocates for inclusion of children with disabilities that they seem to care less if that is really what is best for the individual child. I have met moms that are SO CONSUMED by Autism that they can't see out. They don't return calls. They don't show up for parties. They are so MISERABLE to be around or talk to that I think I found what I was looking for. I needed a wake up call.

I can't say for sure if Autism has pushed these moms over the edge, never to return. It is possible. Perhaps they were miserable people before all of this. It is hard to tell. I think it takes more than having an Autistic child in common to find that support system I am looking for. First of all, I laugh. Aaron and I laugh all day long--at ourselves, at others, at Neve, and yes, at Nate. We were sarcastic people before Autism and we still can see the humor in life. I hope that never changes.

I realized that I HAD a great group of mom friends that I have had since the day I moved to Ohio--and I just needed to turn back to them. I think I started pushing away since it is so hard to *explain* Nate. I also didn't think they understood all of this. ...and you know what? I know they don't get all of it--but my really close Friend here in Columbus said something to me that really changed my views- she said that she knows she is lucky . She knows that it could have been her baby. That her daughter just got lucky. Her daughter AND son were lucky. It was a simple statement- but I needed to hear it. I guess it just felt good for someone to realize that I did everything "right" and somehow I just got a raw deal-and Nate's number was up.

I ended up finding moms that DO understand Autism. -and it just so happens they are not moms of Autistic children. They are moms that want to learn more about it- and help in any way they can. They understand that I can't do certain things-and they KEEP ASKING and trying to include us. I am forever grateful we have such great friends here in Columbus--I guess I have had them all along. I just had my Autism Mom nose so far up I couldn't see them anymore...

To say that Aaron and I are different people than we were a year ago when our son was diagnosed is a vast understatement. We are undoubtedly more stressed and certainly financially poorer, but more importantly I believe we are better people. We are more open-minded, thoughtful, and unpretentious. Every we delight in the beauty and happiness of our own children and SHARE the joy and accomplishments of our friends' children. Every day we gain strength from Nate, whose love and hugs are the reason we get up every day and do it all over again.

What is Autism to us? Autism is a WORD. It is a word that has opened up the door to educational services that can help our son. It is a WORD that can one day help others understand that we are dealing with an uphill battle everyday of our lives and to maybe cut us some slack. I don't have time for people that are so wrapped up In the WORD that they can't see out. They are offended by calling our children "autistic"- saying that it is a label and does not define who they are as children. Of course it doesn't. I just find that an ignorant argument. It is just a WORD. ..and quite frankly I don't have time to sit around and worry about it.

I am off to ride bikes with my beautiful, bright, funny, loving, athletic, darling, graceful, ornery, nice, naughty, sad, frustrated, charming, happy, excited, & AUTISTIC son, Nate. :)

Too cool for school...

The first week of school has come and gone, and we survived- well, just barely. We have lots to work out regarding allergy issues & tolerance issues, but I DO think this is the right place for Nate. I spent the whole class with him on Friday and got to be a part of his day. It was so cute- his teacher- who is great I might add- took off down the hall of the school on a tricycle and Nate jumped on a tricycle himself and chased her down the hall. It was so fun.

Hopefully we can work out all the kinks this week and get back on a workable schedule. Nate will be going to preschool 4 days a week, and he will have ABA at home 6 days a week--not to mention gym class, other therapies, and play dates! I think Nate will be ready to retire by age 5. :)

BIRTHDAY BOY - THE BIG "3"!

I don't think Nate stopped smiling at his party. All of our family came into town to help celebrate-which was awesome. We had his party at Pump-it-Up, which is an indoor inflatable arena for kids with bounce houses, slides, etc.. Nateman had a blast. We invited a few of his close friends but tried to keep the number down as to not completely overwhelm the kid! He did great. The playtime was so much fun--we got grandmas and grandpa jumping and sliding with him too. After playtime was pizza, cake, and ice cream (or taters and peas for Nate). Nate didn't fuss while eating with his aide by his side. He didn't pay any attention the the singing and candle act, but oh well. There is always next year. :) He waved "Bye" to all his guests and continued the after party when we got home- wrestling and playing with his cousins.
Overall, the party was a huge success. Well worth all the stressing beforehand. :)

Don't get in between a boy and his pool...

Nate went to a pool party with his friends this month. It was hilarious. Nate LOVES the pools with slides so he was in heaven. he actually interacted with the other kids to by sliding and splashing, and playing chase. It was great to see. THE PROBLEM came when pool time was over and the kids were put back in regular clothes. This just did NOT make sense to Nate. He did start playing chase around the pool with the kids and he was doing great so I kind of let my guard down. Sure enough- he made a dash for the pool and I couldn't catch him--he was soaked....anyway, this happened a few more times and it was time to go. Nothing like taking home a soaking wet toddler in nothing but a dipaer..lol. He had a blast though and everyone there MORE than understamnds Nate so it was all good. :)

Playing catch up...

Wow- this month has been insane --birthday parties, school, family visiting, etc..-- I will attempt to post a bunch of "catch up" entries over the next few days.....sorry I haven't been able to keep up this month!!

WAVES of progress.....

The day finally came. We have waited almost 2 years for this one "small" accomplishment.

I was getting ready to load the kiddos in the car this morning for a coffee run (which we do often!), and Aaron said, "Bye-bye, Nate"- like he always does- and Aaron waved at Nate. Nate looked RIGHT AT HIM, and waved back. I almost peed myself. Aaron and I looked at each other with disbelief---we were speechless. ARE YOU KIDDING ME??????? Wow. We were floored. Nate lost skills, including waving, when he regressed almost 2 years ago. It just went away one day 'POOF'! ..and it came back the exact same way.
It is also one of those stereotypical autism traits- "does he point? does he wave?". Well, ya know what?? My kid DOES wave!!! ya-hoo!!!!!!!!!!!!!!!!!!!

We are on this crazy biomedical adventure and sometimes I have basically lost my mind--but then my little guy shows us a little nugget of hope- that somewhere in that fog, lies my little boy. The little boy that smiles, hugs, laughs, AND WAVES.

Maybe we ARE doing the right thing--we will keep up with all of our supplements and therapy--and try not to go broke in the process. (maybe I can sell the cat...hmmmmm...)

**Here is a video of a few of Nate's skills lately. The waving isn't the best he was doing today- but it was all I could get on film at the end of a long day. :)**

Every day is something new--Go, Nate, Go!

Nate did something today that I am pretty sure no other kid in America does......
HE ATE BRUSSEL SPROUTS. hahahahaha. He gobbled them up. He is so funny. I am so proud of all the new foods that we have added into his diet. He is one healthy eater- that is for sure. I have gotten his sugar intake down to under 15g/day--and that is only from natural sugar sources (melon, peas, etc..).

He did pretty good this week with his programs. He is giving lots more hugs, squeezes, and kisses to his aides. It is awesome to see the affection on others besides his parents. He gained a few more toy playing skills and is able to match colors now too. He definitely has decalred his major though--PUZZLES! The kid is wacko for them! I guess that is just how his little brain works- he likes being mentally stimulated by things that "fit" and make sense to him. Art and creativity is going to be our biggest hurdle right now I believe. He is getter better and better with his trike, and he is kicking th eball now in addition to throwing and rolling. Tomorrow starts our nextround of swimming lessons. Huis friend Andrew will be there this time. I am sure the little guys will have a ball!

Here is a pic of Nate "sharing" the piano with Neve.

Watch out for Sharks!

This week has been fairly successful! Nate is gaining skills so rapidly- it is just amazing to watch. I am certain that we started all of this at the EXACT right time. If we had started any sooner I have this feeling that we would have ended up at this exact same spot- just COMPLETELY out of money! Nate is open to learning, which an almost 3 year old should be!!

We have mastered skills such as rolling a ball back and forth, throwing a ball overhead, pedaling a tricycle, wooden puzzles, taking off shoes, starting artwork, and the list goes on and on... Nate has also picked up the sign for "swing". I was really proud of him on this one since it is such an akward moving of the wrist- but he got it!

He has been swimming and loving it. We blew up a baby pool with slides for him in the yard and wouldn't ya know it- he broke out from the damn cheap plastic the pool is made of??! lordy. Well I will put a shirt on him next time- he had such a blast. We actually had one of his aides standing in the pool with him and doing his programs from in there. It was great!!! I added some pics of Nate from swimming at our neighborhood pool. I was so shocked that he wore his shark lifevest- but he did! yay!

Nate went to his friend's birthday party today. He did awesome! He got hit in the face a few times by the same little girl, but he didn't push her in return (which is a nasty behavior I had feared he might be picking up). He actually behaved perfectly at the party and was even giving arm kisses to one of his friend's mommy. It was cute.

Move over Rembrandt...I'm framing my Portnoy!

Nate's first artwork. I am so proud of our little dude. He is trying so hard. I can't tell you how good it feels to put something on the fridge. WAY TO GO, NATE!!

He worked really hard today with his Occupational therapist and this is what we got!

Just had to share...more later....

Smarty Pants

Here is a video of a few skills Nate has picked up in the past two weeks. He is clearly ready to be challenged and we are thrilled to see that.

Whew! What a week!

We have had an insane week- that is for sure. Swim lessons have started. Nate LOVES being there. Taking part in the group games and activities is rough (same a s Little Gym), but he enjoys every second of the slides and running under a water sprinkler.

We had our 2 day start-up with Children's Hospital IBI here at the house. It went really well and I think we have a great team. Nate will certainly have his ups and downs, but it will be good for him I think. I think 5-6 hours a day of WORK for any 2 1/2 year old would be exhausting!

Nate's biomed test results are still trickling in. We received his yeast test which shows his yeast and bacterial counts are off the charts high. We all assumed that. The normal range for a certain kind of bacteria is 0-150, with the median being 75. Nate's is 862, which is more than 10 times the average. We are counting the days til our next doc appt so we can start medication to remove the yeast and bacteria as well as starting probiaotics. Along with that comes the worst news of all. We have to remove sugar from his diet, almost completely. This includes all natural forms of sugar (fruit) and starch that his body is transforming into sugar. UGH! This doesn't leave a whole lot left for the ol' dinner table. Most veggies he can have, although he won't touch them. He is eating ground beef and ground turkey though, so it is SOMETHING I guess. He won't starve.

ABA is underway!

We are up to 15 hours this week of ABA(5 days a week) and we will increase to 20 in the next 2 weeks. What can I say about it? So far, so good! He seems to like his therapists. They are all so very different from each other and have very different approaches with Nate, while still being consistant. Nate has been coming to the table with ease to "work" on puzzles, sorting, object labeling, simple commands(stand up), and imitation (touch your head).

Nate has also started picking up a new sign!! He is tapping the back of his hand for "stack" (as in blocks). If he continues I will be sure to get it on video. He has kept up with "please" and "more". When Nate gets frustrated he just starts signing "please" and "more" frantically because that is the only way he feels he can express himself!! It is quite sad actually. we are anxious to get him some more "words" so he can express his little wants and needs.

AUTISM:THE MUSICAL

Wow. This was so touching. Aaron and I watched it tonight- of course I cried through the whole thing, but that's nothing new.

What a sad, sweet, realistic, down-to-earth, view of Autism. Aaron and I fell in love with Wyatt and we also see a lot of Nate in all the different kids they featured. I just want to run upstairs and hug my little man in his bed.

Go buy or rent this--it is an amazing documentary.

making plans for change...

This week has been crazy busy with making plans. We are about halfway through our school evaluations to creat Nate's IEP. We took Nate to what will be his new classroom so he could meet his new teacher. I think she is great. It takes more than just great teaching skills- special needs teachers have the BIGGEST hearts. I was amazed watching all that she undertakes on a daily basis. Wow. We are very comforatable sending him there- and we are prepared for the incredibly hard first few months until a routine is established. He will be going 4 days a week for appx 2.5 hours. We also got to meet a little boy who will be one of Nate's 4 classmates next year. He appeared to be at approximately the same "level" as Nate, but he was verbal and of course Nate, is not. That is going to account for 90% of the frustration I am sure...

We are trudging ahead with Nate's ABA setup....and I do mean trudging. It is slow going trying to get everything up and running. Our students are hanging in there with us so far though, so that is a plus.

We are still trying to sort out our ST and OT options for Summer and into Fall. Nate won't have a free minute, poor guy. Let's hope we are making the right decisions for our little guy.

BIG DAY!

I don't know if it is the new supplements or what--but we are having an amazing day! First, Nate started off the morning by feeding Daddy Perky-O's (Nate's version of cheerios). Nate has never fed us anything. He has never seemed interested in our mouths or the fact that we eat too.
Second, when my friend Heather was over today for playgroup, Nate held the play phone up to my ear to pretend--ok, this is a skill he lost over a year ago. He has done NOTHING even close to pretending in over a year.
Anyway, at this rate Nate will be doing algebra after his nap today. I'll keep ya posted. :)

Why Me?

God Chooses a Mom for a Disabled Child
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew." "Forrester, Marjorie; daughter; patron saint, Cecelia." "Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God ? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive.
Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. "I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint ?" asks the angel, his pen poised in midair. God smiles. " A mirror will suffice."

Not my usual "speed", but maybe I should just slow down once in awhile..~Meg

Signs, Signs, everywhere there's signs......

Well it finally happened. After almost a year of signing to Nate, he finally picked one up. It isn't the "proper" sign, it is his version, which is more of a clap. WE ARE SO HAPPY! It is communication progress, so we will take it. Way to go, Nate!

May is here....

Things have been moving along here towards Nate's ABA program. We have hired 3 students (one male, 2 female) from Ohio Wesleyen to work with Nate appx 20 hours a week to start. Their pay is entirely out of our pocket until some other State funding potentially comes through--so we will see how long we can continue through self funding. It isn't going to be pretty- draining every last cent we have, but I don't see another way. Our parents will help eventually I suppose, for which we are so thankful, but in the end I am sure it won't be enough to cover everything. I don't know if someone that hasn't gone through this realizes the actual money spent---between specialists that insurance doesn't pay, community classes to have him interacting with other children, ALL the supplements he is currently on (13 total, one of which is $60 a bottle....), his special diet, educational books for us, ABA training for ourselves and the aides, biomedical testing, therapy toys, and, well, I suppose I could list things for days. I didn't realize how LONG the list actually was until I started typing it out...hmmm...very depressing.

We DID make it back to the allergist and Nate tested positive for a severe DOG allergy. He was tested last Fall and it didn't show up then--so that shows you how quickly allergies develop in our little guy. Not that we have a dime to travel on, but trips to family will now be out of the question since we have quite a few BIG dogs in the family.. :(

Little Gym is still going good- he enjoys playing there. We are debating about enrolling for the Summer session because Swim Lessons will now take the Saturday am spot. We are unable to attend most activities during the week when Aaron is working because we don't have anyone to watch Neve on a regular basis.

We have officially stopped all vaccinations on Neve. She is growing so strong and her strides are amazing to watch. It is all the skills and mental growth that Nate had...before it all went away. If that happens to Neve we will never forgive ourselves if immunizations play ANY part in that. So, for now, we are stopping everything. We just want to give her EVERY chance possible to come out on the other end from all of this. Nate developed PERFECTLY normal for the first year of his life too...so the true test is yet to come...we hope for this every minute of every day.

Welcome to Holland

WELCOME TO HOLLAND by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." " Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

Reprinted with permission from Emily Perl Kinglsey. 1987 copyright by Emily Perl Kingsley. All rights reserved

IS EVERYONE JUST STUPID??

So I was talking to a "mom" friend of mine today and we were discussing that fact that I was not going to have any more children. I assumed this was obvious. She was like, "What do you mean?? The odds of Autism are so slim- do you honestly think it would happen again?" Um- wha??? What the hell are you talking about?! Of course it could happen again and the odds are that it could!
"Families with one autistic child have a one in 20 chance of having a second child with the disorder. In some cases, relatives of autistic children show mild impairments in social and communication skills or engage in repetitive behaviors."
Why in the name of all that is good in this world would I EVER roll the dice? Is she on crack, or just stupid? It made me wonder. I also brought up the issues of TIME that I have and trying to juggle Nate's life and schedule in addition to paying attention to my 3 month old "purse" of a daughter. How selfish of me to just keep overpopulating the earth for fun, when I have a special needs child at home--and the only people there for him on a daily basis are his 2 parents. I thought this just made sense, but I guess I was the stupid one to assume that.

..but I suppose I should reflect upon the person making the comments to me---the fact that she is living beyond her means to raise 3 children and is in debt up to her eyeballs, by her choice. Her teenager isn't far off from college-age and I know she has ZERO money put aside for them---and I just mean for "normal" life. God forbid one of them has something medically wrong with them. My family knows that "school debt" route all too well. I guess you just move forward and try not to relive the mistakes of your own family. I can't imagine not paying for my child's education if I was finacially able...and that being said, I wouldn't have so many children that I couldn't afford their education and a foundation for them to be productive adults. ...that way, when they grow up to have "special circumstances" involving their own children, they aren't hit with the overwhelming burden of school loans that shouldn't be that "special needs" child's problem.

My other girlfriend is starting a journal---of things to remember for when we are grandparents. I think that is an awesome idea. I am mentally on chapter 32.

Support us on the MS WALK!

http://main.nationalmssociety.org/site/TR/Walk/OHAWalkEvents?pg=personal&fr_id=6710&fr_id=6710&px=2993778

Nate, Neve, Mommy, and Auntie Alisha are hittin the zoo on April 12th to raise money for MS. This is our second year doing the MS walk. My friend Ky, and Auntie Alisha are living with MS and we are happy to support the cause that would help to change the future for Nate's generation.

Check out the link above- and donate to support us!

Poor Puffy Face Nate

Well we spent most of the day at the downtown Children's Hospital ER. Nate had an allergic reaction after a playgroup at a friend's house. We don't think it is food related- which makes it that much worse ---since we have NO CLUE what caused it!!! He has the swollen eyes, hives, blisters, and allergy "shiners". It ain't pretty.
He is home now and ok. I guess we are headed back to the allergist to have more extensive testing done. Lovely. I am thinking I should just put the little guy in a hamster ball and let him roll around to play. At least that way he would be protected. ---although with my luck, he would be allergic to the plastic the darn thing was made of.

ABA ABA ABA ABA ABA ABA ABA ABA

Ok- this is ALL we talk about. My head is exploding. We are starting to piece together Nate's ABA( http://autism.about.com/od/alllaboutaba/a/abaoverview.htm ) program. When I say "piece", I mean it. We are running our program through Children's Hospital as our painfully lacking insurance will cover some of the outrageous expenses. There will be a team of aides that work with Nate directly though, and it is our job to find, hire, and train them. Um, say wha?? I have been agonizing over this for months and months--- how the hell am I supposed to put 40 HOURS of therapy and training into the hand sof some yahoo I have never met, that has NEVER done this before, and has never worked with Autistic children???!!?? That seemed unreal to me. Especially being the control freak that I am, there is no way in hell I cam leave someone alone with my child, in a room in my home that I am not in.

Well, today I am (thankfully) singing a different tune. My mom friend, Vicki, is a Psycholgy professor at Ohio Wesleyen. She actually teaches classes in, you guessed it, behavior modification. I am ecstatic. What a great resource to find students that are actually interested in this field and would care about the work they are doing!!! Plus I have the added bonus of someone I know and trust recommending sharp students.

I can't tell you what I huge weight has been lifted off my shoulders. Who knows what the next few weeks will bring- with the interviewing and our intake meeting with Nate's lead Psychologist- but it is starting to "sit" better with me anyways. Well, that and the fact that I am installing a closed circuit video monitoring system in the playroom.

**pic of Nate with his "cheesy poofs" aka rice cakes.

Great Week at Little Gym

Last Saturday was BY FAR our best week at Little Gym yet. I am sure it is a combination of familiarity and everything else, but Nate did so great. He participated in EVERY activity including circle time. He rode the parachute around while he was arm to arm with the other kids. It was amazing. I barely recognized him. It was definitely a proud Mommy Moment.

Nate has been playing in his new ball pit. He was a little uneasy at first but now he dives in head first. He loves it and we are always happy to see that big ol' smile on his adorable little face.

Tonight we toured a public special needs preschool as another option for Nate. It wasn't horrible. I guess if that is the first thing that came to my head to write, then I am probably not too shot with it. It is in a horrible location- about 20 minutes NORTH of my house and on back roads that would be horrible to navigate in the bad weather with two little kids on the car. Otherwise, the facilities were nice and Nate had a ball playing in the Motor Room. I suppose my biggest concern, and it may be completely unjustified, is the types of kids that would be in his class. It is public, so there are disabilities of all levels and types. The children with the physical disabilities are obviously needing a little more attention in regards to activities- which I admit is selfish to think- but it takes that attention away from MY son and his education. I am sorry but that one on one time is SO important and I can't have him taking the backseat to anybody simply because he is excelling physically. The school is free since it is public, but I am not sure if I am selling him out to a general disabled program. He deserves more specialized attention and time with kids that are on the spectrum and have the same shortcomings that he does. hmmm......what is that worth to me? 27 Grand?

Therapeutic Listening

Nate's occupational therapist has suggested we try Therapuetic Listening. http://www.vitallinks.net/index.shtml ...so we are gonna give it a whirl. It really is just indtrumental music while he is playing and it does seem to help his concentration. It was funny- our therapist said, "Now don't worry- I know I promised you I wouldn't bring over any heebie-jeebie tools and methods for Nate.". LOL...I told her she can hit him from whatever angle she wants as long as she doesn't feed him or inject him with anything!! We are open to trying almost anything if it can help our guy learn new skills.
Nate has been doing great this week with his puzzles and piggy bank. These are both great for gaining fine motor skills. He also has been stacking things (a skill he lost or refused to do) and playing 2-3 steps games.
We finally have a concrete date for our DAN! doctor visit (instead of just phone consults). July 30th is the date. I can't wait to get him tested for ALL KINDS of things and find out what poisons are in his little body. I am prepared to be shocked as I feel really strongly about this.
He is off to speech therapy today- if we can make it there with all the snow!

EEG is clear

Well, it has been a busy week. Neve's doc appt went well and the ped is completely on board with my alternative schedule. Score one for the little guy.
Nate's EEG results came back normal- we are thrilled to hear that. Seizures are not something I am ready to think about. I wasn't too worried in the first place since his sleeping patterns are beyond normal and he is always well rested- but hell, what do I know.
Nate did great with therapy this week, and Little Gym too.
We got word that the move to WI is a no-go. I am already house hunting here in Columbus to find a better fit location wise for our family.

Ready to Rumble....

Nate had a great weekend. He had Little Gym on Saturday and it was the FIRST class where he didn't cry AT ALL- zero breakdowns!!! WOo-hoo!! I was so proud of him. He was happy and running around like a madman. I also have "figured out" that another little boy in his class is on the spectrum. I am slowly starting to talk to his mom as I am pretty sure she thinks I am a stalker as it is..lol....but I know her son is attending the school I am considering for Nateman so she would be such a valuable resource.
Nate also started making a new consonant sound- the "guh" sound. We are hoping it might be the start of "GO" which we say all the time and try to prompt him with. We shall see......
So tomorrow is Neve's 2 month appointment and I have my "presentation" ready. I am creating a (guided) alternative vaccination schedule. Let me say I am NOT anti-vaccinations. I am not saying that vaccinations cause Autism anymore than Cheetos do....I really doubt we will know in my lifetime, but it does just make SENSE that overloading their little bodies all at once with all that crap can't be good. Especially when we have a history now of Autism in the family as well as MS. I am expecting a fight though. I do not know our pediatrician's stand is on this matter. Tomorrow will be the big discussion. My girlfriend suggested something to her ped and the ped walked out of the room refusing to discuss it further. I would have found another pediatrician IMMEDIATELY- and that's probably what I will do if my current ped tries to dictate what I MUST do for my child. SO.....I am bringing a proposal, if you will, of what I have planned....but I am also gonna throw a pair of boxing gloves in the diaper bag just in case. I dare ya, Doc.

PECS, PECS, PECS

Nate had a great day at Speech Therapy. We are really gonna buckle down on his PECS book..I am posting a pic of what it looks like. We will add pics all the time as he picks them up and eventually he wil use the sentence strip. We are hoping for the best since he picked up the overall idea of it pretty easy the last few months.

The journey is so painful, I hope to never reach the destination....

A
I have to say the first emotion I felt was Anger, I was angry that this had happened to me,I had been so careful,I made an appointment with my doctor, when I was barely a month along, I took good care of myself, I ate well,and didn't abuse my body with drugs or alchohol, or smoking.I felt such rage at first, this was not fair,some women neglected themselves, and didnt care for the child inside,and their child was perfect. Why not mine?
U
Unbelief..... denial...........you name it, I felt it. This was not happening to me, I would wake up in the night, and it would hit me, my child has autism, and then I would plug my ears, trying to stop the voices in my head, I would bury my head in the pillow, refusing to believe this was happening to us. It took me a long time to let it sinkin, and to this day, I sometimes forget, and then the realization hits me, and it knocks me to my knees again. It takes all my strength to getup. But I do, because I have to, I have to be there for my child.
T
Of course the tears, tears of rage, panic, frustration. Gut wrenching tears in the middle of the night, somehow it always seems worse in the night. The house is quiet at last, and there is time to think, to ponder, to pray. Tears though are such a relief, without their outlet, Iwould have gone crazy. But, I have held them back so many times, in a store when someone makes a cruel remark, or a child who approaches mine, then backs off with that 'look' on his face.I refuse to cry then, because I still have my pride, and it although it is tattered, I cling to it like a security blanket.
I
Isolation, oh yes, the isolation. Friends seemed to disapear into thin air, when they found out.Sometimes I wanted to scream "It's not catching, " but they wouldnt hear me, they were too busy planning playdates with other children who weren't as hard to handle as mine. The phone stopped ringing too, and people would turn away at the grocery store, avert their eyes when my child had a tantrum. The isolation is the hardest thing.......... being alone hurts. At the time in my life when I needed friends and family the most, the pain of them looking the other way, was indescribable. But I have found friends, people who know the path I take, for it is their journey too. For this blessing I am so grateful. These are the true friends, the ones who are there for me, when life is unbearable.
S
Sadness and Solace, I have felt the sadness of knowing my child will not be like other children, I have wept many tears for him. I have spent my waking hours, and sleepless nights worrying about his future, who will care for him, what kind of adult will he be? Will someone be there for him, when I am gone? I can honestly say there is not one person who would give it all up for my baby. There is such pain in not knowing, there is nothing so hard for a parent, than realizing that one day, you will not be there to take care of your child. And knowing that this child will always need your care. But there is Solace too, and I have felt this peace,I have learned to accept this Autism, I cannot erase it,nor will I embrace it. But I have come to a feeling of peace, and I go on because there is no other way.
M
Mercy and Magic, Have mercy on me, It's so hard to raise a child when others look on, and instead of holding out a hand to help, they stand in judgement. Don't judge me, when my child acts out, when he screams because something has changed in his environment, he doesnt do it purposefully, he is only reacting to his feelings. I am a good mother, I love my child like you love yours, I want the best for him, yet I cannot give in to him. He looks to me and I must teach him,just as you teach your child. I may do it differently, because my child is different. He learns in his own way,and I have to teach him in a way that to others may seem odd, or unusual.Magic? Oh yes, there is magic. I have seen my child blossom, I have seen him learn, I have watched his wonder, and rejoiced in his smallsteps. His smile is magic, and his heart is gold. His eyes are the window to his soul and it is the purest thing I have ever seen. I did not choose this journey, but somehow it is mine, and I must see the roses, as I walk upon the rocky pathway. I did not ask for this, but it was given to me, and I must be strong enough to bear it. If I cannot,then I am lost, if I give up, who will take my place?There is enough joy, if I look for it....... it will find me. It must.

Some "good days"....

The past two days have been good. I had a playgroup here yesterday for Nate and he actually did really well. Usually I end up turning on The Backyardigans in the background just to get Nate to focus and want to stay in the room- but I didn't have to turn anything on at all. He did really well. He did steal a few sippy cups- one of which had milk in it, and I was too slow to grab it before he drank some. It is hard because everyone in his playgroup is GREAT about Nate and we really don't have nuts at ANY of the group functions for that reason...but with this new diet it's not like I can ask everyone to only bring Nate-approved food and drinks- it is just not possible. I do my best to watch him but in the end- if he has a little dairy or whatever, it's not the end of the world..compared to what peanuts do to him.

He is still interacting with us really well and his eye contact is great. Poor Glenn is complaining though since Nate is now "playing" with him all the time. I think there have been a few tail pulls involved. :)

Blood test results were normal.

We got the results back from Nate's blood tests that were ordered by the neurologist. They were looking for Fragile X, Chromosomal abnormalities, serum amino acids, and a whole laundry list of others. I guess these have been present in many children with Autism - but not in Nateman. That means we won't be testing Neve, since it isn't present in Nate and we won't be choosing a treatment method surrounding these results. It just rules it out and we are back to the drawing board.
Nate did great with his therapies on Thurs and Fri. He is really relating to Jasmine (OT) and Melanie(ST) well. He is engaging in activities and initiating play. These are GREAT steps.
Nate has also been getting the full dosages of DMG and Super Nu Thera this weekend - I know I will sound crazy but I swear he is "talking" a ton more. Maybe it is wishful thinking. We will see. LOTS of families swear by these supplements- so I will just keep a "sippy cup is half full" mentality.
Little Gym was way overwhelming for the little guy this weekend (Aaron took him)- but we will keep trying.
Oh- and Nate is paying so much more attention to the cat. He has tried to "pet" him a few times too....all good things....

Has anyone seen my money tree?

I toured a school called Haugland Learning Center last night. I basically sat in the car after I left and cried for Nate. It was a school aged/preschool center through 22 yrs old. It even helps them with job placement. It was just too much for me. I am not ready to look that far ahead. I can't imagine my seet little guy learning to do laundry and other things in a center like that. I suppose I am in denial but it was excrutiatingly hard to be there and see his future. I felt like SCROOGE watching it all from a bubble and realizing how much harder I have to work to get him to a good place so that we don't have to go down such extreme roads.
This morning I toured Oakstone Academy. It is a preschool center for kids 2 1/2 to age 6. It was very nice. I could send Nate there. It is so complicated though because we need to coordinate a prechool program with a home based 1 on 1 ABA program. Oakstone has 50/50 typical kids to Autistic kids. We will have to see if Nate even qualifies. He has such an extreme level of need that he may be disruptive at a level that isn't able to be handled. Most of this stems from his lack of ability to communicate verbally. We will continue with the PECS and hope we can make leaps and bounds there. The school is skilled in PECS and will work with him although only a SMALL handful of their students are non-verbal like Nate. This will be an uphill battle.
Did I mention the tuition for these badboys? We qualify for the Autism Scholarship in Ohio which pays for 20 grand a year.....well Oakstone Tuition is about 30 grand a year (and that is just the HALF DAY program)- plus we will have a home based ABA program or some sort of supplemental OT/ST program which will run about another 30 grand a year. At this point, that part is out of pocket entirely. Nate may be eligible for Medicaid- but it is doubtful it will pay for much- and won't come through before he turns three anyways. It will pay for things such as transortation to and from school and things likethat- but if you know me at all you know I would never put my kids on a bus- ESPECIALLY Nate. I will personally make sure my baby is dropped off at school and that he is set up for success. Every day. It is my job. Aaron and I know I will never go back to work. Nate is now my job....and I can't imagine a better boss. (I just wish the pay was a little better ;).
So if anyone sees my money tree, let me know. I am gonna need it. How do young families on one income pay for this type of thing? Nobody prepares for it- so what do you do? Sacrifice therapies for your child?? Not a chance.

EEG Day

Nate had his EEG today at downtown Children's Hospital. It is so hard because we have no one to watch Neve so that we could both go with Nate. Aaron took him because he could restrain him easier. It killed me not being able to go hold his hand. They had to strap him down and papoose him while gluing wires to his head and body. Aaron said he was a trooper. They got the data they needed so we don't have to go back and try again- thank god. It will probably take forever to get the results back from the neurologist. We are also waiting on the results from chromosomal abnormalities blood testing Nate had done a few weeks back. I swear that's all we do...wait, wait, wait.

Nate was a cutie pie tonight- even after his rough day. He knows how to take all his clothes off for bathtime with little assistance and he now throws his clothes in the hamper. Great Job Little Dude!

Fri was our part-two of standardized testing for Nate at the Autism Center. This will basically give us a formal diagnosis (on paper)from a Clinical Child Psychologist and "rate" him, formally, on what levels he is currently at so we can set goals on where we CAN HOPE to go. Our private therapists have rated him at a 7 mo old level for Speech and Language, a 10 mo old level for Communication & Social Skills, and he is age-appropriate for Physical skills. We have a long way to go.
Nate fought the testing 90% of the time (which was expected), so who knows the accuracy of the data- although they do base it off questions from Aaron and myself about his skills demonstrated at home also.
I have learned so much about Autism Spectrum disorders, my head just might actually spin off. Kids in Nate's "level" of Autism sometimes remain non-verbal their whole lives (40% of the time), or he could start talking tomorrow, or he might start when he is 8 yrs old. Anything goes with this disorder. ON the positive side, I guess that always gives us HOPE that he might just bust out with words one of these days.
Nate also had his second Little Gym class yesterday. It didn't go so well. He was clearly overwhelmed by the number of kids and parents in the room and had a 20 minute breakdown. It is so hard watching everyone stare at my "disruptive" child and wonder what the hell is wrong with him and why I am not doing anything more than holding him and applying pressure to his body to ground him. I hate feeling like I always have to explain Nate. Lord knows I could care less about what people think of me, but I hate them staring at my child and judging him. One grandmother who was there with her grandson goes, "He is quite the angry child, isn't he?". What the hell does that mean??!! ..and of course I just said" actually he's a great kid" and I carried Nate to the other side of the gym. I loathe stupid people who feel the need to chime in. Hopefully next week will be better. I am not holding my breath. Maybe Aaron can go next week. I might lose it and take down some soccer mom in the Little Gym parking lot.

Preschools galore...

I have embarked on the dreaded preschool hunt. I can imagine this is hard for any mom to find that "right fit", but this is WAAAY out of my comfort zone. I have 4 tours set up in the next two weeks. I have to check out their curriculum (make sure it is ABA based, non religious, etc..), location, facilities, staff, make sure it is a nut-free building, and my list goes on and on. I would have to say the worst part is finding somewhere I would actually be comfortable leaving my little guy and getting back in my car. I am sure this is hard on all day-care-disapproving moms such as myself, but this is worse. Nate can't tell me all the great things he does at school, let alone the bad things that happen to him. He has no voice and therefore I am completely in the dark. Then there is the ever present money issue. We are touring the private Autism Academy that I have heard good things about, but I pretty sure I will have to donate my eggs to afford that one. ...but hey, if it seems the best to me- I will beg, borrow, and steal to make it happen for Nateman. He deserves the best, and nothing less. I would never forgive myself if he didn't get ALL the help available to him because of money issues. Especially during these years when it has been proven how helpful these treatments are to pull Nate back into our world. We will find a way.

We are still tossing around the 40 hours of ABA strictly, but we are just exploring all our options. Plus, to add that cherry on my sundae, we still don't know about the move to WI, so I am exploring outlets there as well. I don't want to miss my spot on a waiting list- because EVERYTHING has one. Tomorrow is our part two of visit two at the Autism Clinic. We couldn't even get through all of the standardized testing last time so hopefully this week fares a little better. Wish us luck.

Starting the diet full force

We are, and have been, fazing Nate into the GFCF diet slowly. We are introducing snacks and finding replacements for all his favorite foods. It is extremely frustrating, and expensive, finding foods that he is allowed to have. After making a seperate trip to Wholefoods (which is a ways away I might add), I was more than overwhelmed by trying to read labels and make the right selections. I can find tons of resources for foods he can have- but nobody seems to "bring it all together" into one resource for Nate. He can't have Gluten, Dairy, Soy, and of course if allergic to nuts. Well, finding GFCF items is possible- but a lot of them are made in facilities that process nuts as well..so I am basically screwed. This is a HUGE undertaking and unfortunately, we are on our own. We took Nate to a nutritionist- that insurance didn't cover I might add- and basically got some good info- but it isn't brand specific. That means I have to scrutenize every damn label and the then leave the store an hour later with about 10 items to try.
We are desperate to get him to a DAN! doctor to start his biomed treatment and testing...but once again, there is a waitlist. Six months this time....and well it goes without saying that that isn't covered by our insurance. 600$ for out initial consult- plus 200$ every six weeks for followups, and then all individual blood/allergy tests are billed extra. Lovely. Guess I better start looking for my "night job" and changing my name to "Savannah Rain".