yes, really!

I know I've got to get a decent post out since it's been a while...But this is all I can do for now as us Utahns are celebrating Halloween tomorrow night! Yesterday just before dinner Jonah fell off our trampoline face first. It was sad, he cried, I cried, Isaac wiped away tears...well, not mine. It looked bad but not bad enough to have him seen.

I went to check on him around 9:30pm and Isaac examined his owie. Isaac was surprised to press down on his goose egg and find his finger sink into Jonah's forehead. I was disgusted and immediately I began to gear up for a long night! After taking pols over the phone from friends who are nurses, I finally took J to instacare, then St. Marks, and finally ended up at Primary Children's, where I should have just gone in the first place...(No one ever is equipped for this kid!) We then went through all the hoopla and were finally able to go home in the wee hours of the morning. I'm so tired I can't even type out details. They were concerned that he had cracked his skull, by the way the fluid was surrounding the forehead. Now we just have to keep a close eye on it to make sure that the fluid hardens up to form a goose egg and we need to check his eyes frequently.

Yes, just another normal day being Jonah's mommy.

Jonah's first day of school

Today Jonah went to his first day of preschool...
He did well, no crying, just withdrawals from his BINK!
As soon as he saw me that's the fist thing he signed for!
Cute pics of the first day at Pingree, school for the Autistic....

at this point I just expect things like this

At this very moment, I am sitting on the edge of the couch typing on my laptop, Morgan sitting on the couch watching signing time and eating a frozen GF/CF cookie (a new recipe her and I tried out last night) and my sweet Jonah is holding his cookie in one hand and hitting his head against the giant front window. I am clenching my teeth.

Usually I would correct this behavior as it gets under my skin so fast! Instead I am fighting myself and just going to sit pretty, typing on my Blog.

This morning we went to our first Occupational Therapy appointment through the children's hospital. We are having BIG changes in our lives with Jonah being exited from early Intervention (he will soon be 3) I am now rearranging his entire world and I know it's hard for him. New therapists, new school, new meals, shorter nap time and now just coming off steroids for the umpteenth time. The OT we saw today suggested that we let Jonah be Jonah for the next couple of weeks, this meaning we just tolerate his abnormal behavior as he is getting comfort and security through it.

Since this was his first appointment with her she did an evaluation to see where he was falling in each area of concern. I can't say I'm surprised as I am with my son 24/7 that his sensory was so far out of whack. I was a little embarrassed. As the OT was going through the results of the test we both look over at Jonah who is at this time "petting"the carpeted floor. Oh my. Sensory integration was one of Jonah's early on diagnosis. Im not sure when or why therapy had come to a halt with regard to it, but now he is, no, we are paying for it. She will like to start seeing Jonah weekly. Today we set goals, and talked about how all the changes are going to have a more negative affect on him and for me to be watching for more "neurotic"behaviors.

Joy!

Tomorrow Jonah starts his first day of preschool at Carmen B. Pingree. I have so many emotions, but I have decided to deal with them on another day, a day when I'm not stressing out about the stupid things like finding a small back pack that Jonah will be able to wear.

Jonah, Jonah, Jonah

Yesterday, Jonah had an appointment at the Center for children with special health care needs (CSHCN) He met with the neuromotor team. It was a great appointment. Jonah was testing at 18 months for gross motor and 18 months for fine motor. Funny, his development and clothing size are the same! The head doctor decided that Jonah has made great strides and feels like I have pulled together an awesome team to care for him, so for now we will only attend the CSHCN clinic on an as needed basis. This is great for me, one less appointment to go to.

Jonah does have a great team of doctors. I have been trying to create this miracle team for 2.5 years and finally here it is. Unfortunately it won't last as Jonah will be turning 3 on the 7Th of November and he will loose his early intervention. This has been a hard reality, as we both have come to love our therapist. I am hopeful that Jonah will still be able to attend play & learn, a class offered by early intervention that we will just have to pay out of pocket for.

I ended up speaking with the school district about Jonah starting at the autism school earlier then expected. After much debate, I have just decided not to put Jonah in the school district and for now just focus on him going to a special school. Tuesday will be his first day, and together the teachers and I will write up a CARE plan.

2 of Jonah's doctors (newer doctors) want to do genetic testing on Jonah, as they find it peculiar that he has these lung issues and development issues. I am not sure that anything will come out of it as his pulmo doc reminded me (and she knows Jonah best!) his carbon dioxide levels were above 200. (normal is 35-40, this is what was killing him) But I am curious as to what else could be found out about my little man. Genetic testing is very interesting, but very pricey!
I'm in no hurry. As I said, I doubt that they will find anything that would place these two issues into one diagnosis.

another day another...TEST

It's still so unreal that Jonah will be starting into the Autism school in just 10 days! I am starting to get a little freaked as we have been connected by the oxygen tube for most of his life. though I will not be cutting the oxygen tube (haha) I will be forced to cut the umbilical cord so to speak. Am I ready??? No. But this is what is best...and "It's good to do hard things!" right?

Today was more testing but with the school district. We have had testing set up for months now. This testing is to place Jonah in a special education program in the districts preschool. Though this might seem unecessary because he will be attending the autistic school, we need Jonah to have an Individual Education Plan (IEP) in place, and to get the IEP they need to of course do testing to see where he stands. My plan was to have Jonah go to the autistic school in the morning for therapies and then have him go to the school districts special ed preschool for more of a "social" therapy. (unfortunatly, the special ed preschool is mainstreamed with "normal"children, leaving most of the "therapy" up to Jonah, by watching the other kids in the class and picking up on social cues. Lame... I know!)

I have decided to keep our good news (Jonah being excepted early to the autistic school, they think he will not be going there until Jan) a secret for now. I want the IEP written up and then I will share. However, today when I shared my plan of having him attend both schools it all came to a screetching hault. They said that Jonah will not be able to do both programs. I am confused as to why, since they themselves told me that all they really offer is a "social outlet" with very limited therapies.

Of course this is not sitting well with me, so I will be lacing up my boxing gloves and getting in the ring with the school district starting Monday. If the insurance company has no problem paying for both what does the freeking school district care??? I had even mentioned that we would pivate pay, so that Jonah could get some socialization in, but they said that he would then be considered a "normal" child and get no speech therapy. UGH! can't win!... Yet!

Everything happens for a reason

Through this journey I have been on, I seem to always get the same comment from people who don't know what else to say, people who have good intentions and/or people who really believe this mantra..."Every thing happens for a reason" I have always believed that we make our own fate...then along came Jonah.

Daily I ask myself, "why?" I have so many "why" questions I could write a book as thick as the encyclopedia. Well, ladies and gents, today I am a believer in that mantra...

EVERYTHING DOES HAPPEN FOR A REASON!

A few weeks ago I was talking with a dear friend and she suggested I re-read a book I read pre Jonah. The book is written by a mother who's son was diagnosed with autism and she goes from knowing nothing about it to changing her boy's life around. I ordered the book a few days ago and as soon as it came in the mail my nose has been stuck in the book. It's eerie weird how much her son and mine have in common. While I am going through my journey with Jonah this book is like narrating our life. like I said eerie!

So the big news...

Jonah had his first appointment at the autism school here in Salt Lake. I knew all along he would have to go through testing to see if Jonah would be an appropriate fit in the school. Right away they hauled Jonah off to one of the class rooms where he would work with a speech therapist and the head teacher. Jonah spent 3.5 hours today (as did I) going through testing, while I answered very invasive and emotionally challenging questions. Right off the bat the doctor who would be diagnosing Jonah said to me "I am the mean guy, the guy who is going to want to know all of Jonah's down falls, the guy who will also be pointing them out to you." And he was right.

Over the past few years I have tried to harden my shell, tried to put up gates masked with a friendly smile, while people pick apart, diagnose, medicate, and operate on my guy. Truth be told its been the hardest thing I have ever done and ever will do. Today while sitting in the doctors office I was asked to also pick apart my son. I did my best to hold it all together but as soon as the doctor left me alone in his office I cracked. He returned to his office with Jonah by his side. Right when Jonah entered the office where I was he started with his clapping. (something he has started doing whenever he gets excited) The doctor asked a few more questions then handed me a sheet of paper declaring that Jonah has PDD-NOS one mark away from being declared autistic. (thanks to the practice "makebelieveplay" we have been working with Jonah on) The doctor was quick to burst my bubble saying "what is the difference in 5 shades of red when you add one more?" then followed that by saying next year when the new bla bla medical book comes out PDD-NOS and autism will be one. I told him I prefer the label PDD-NOS over Autism. He laughed.

Jonah will start at the school in 2 weeks. I feel so blessed. I am forever grateful to the behavior doctor who told me she thought Jonah had Autism, the Dr who I was once so hurst by, just months ago. If it weren't for her diagnosis I would still be sitting wondering what to do with my child. Still wondering why people keep telling me everything happens for a reason, when no good is coming from what was happening. Now I can say that something wonderful has come. Jonah is lucky to have found a spot so soon, as the waiting list for this clinic is usually out 8 months. I made a phone call at the perfect time, he got in right away, and now intense therapy will begin.

My Guy

It's so funny how I look at my children all day long. I looked at Jonah while he was playing in sensory box with such concentration all over his face and all of a sudden my almost 3 year old really looked like a 3 year old (instead of the 18 mo he usually passes as). I felt the smile beaming on my face, but then oddly enough I was a little saddened. My baby is growing. He really is starting to look less like a toddler and more like a boy...And such a sweet boy!

Just wanted to share...

SIDE NOTE> Ok weird, I logged on to write and blogger has changed. There are some cool things, but then there are also new changes that make it confusing and I don't function well while being confused.

And now, here's something you'll really like




I was just in the beginning stages of coming to terms that right now life sucks, I mean really sucks! Then..........

My phone rang!

No it wasn't extreme makeover or Oprah or at this point Jerry Springer! Alas it was Kristin! Yes, it was Kristin bla bla hyphenated something. She called and I picked up. This is a miracle due to the fact we have been playing phone tag for a month now. Kristin is the head of the preschool at PINGREE. So, I chatted it up with her only to learn that now the waiting list is closer to 1.5 - 2 years out. Crazy! I asked her tons of questions to see if this is even the right direction I should be taking Jonah knowing that its such a long wait, and then the curtain was pulled back and she revealed to me top secret information.

Ok, maybe not top secret, but definitely not information that was ever given to me.

Pingree offers a part time, M-Th 8-11am preschool class for kiddos who have autism or PDD-NOS. I believe this is the "Expanding Horizons Child Development Center" There is still a waiting list, but Kristin said Jonah will be able to get into the class by January! I am so happy. All of a sudden 52 lb of mud fell off my chest and I can breath. I have a plan now in place! (FYI~ this is a total phychotic/mama bear/ VIRGO thing, but I need direction at all times in my life at this point or I am coocoo; I have whiteness's to this fact.)

Funny how one change in your day (like picking up your phone) can get you back up in the saddle again and ready for a new ride.

48 hrs in California, but a life lesson in time

When the plane finally hit ground in San Jose Ca, everything was ok. I could breath. We made it. I would not have to worry about Jonah on a plane for another 48 hrs. And we sure enjoyed those 48 hours. I didn't even realize all that we had done until sharing our trip and details with my brother. It was great fun, and always wonderful to see my Mom and her husband, Isaac's dad and my wonderful grandparents. Oh, and my friends!



I took the kids to the beach one morning and we were able to watch the sun rise and walk along the beach with ankles in the water. It was like a dejavu. Something I use to do with my mom, brother and sisters. My mom use to wake us up to hit the beach for an early swim in the ocean. (I'm talking like 6:00 am...Ok It might have been around 8am) Yes it was cold, but so much fun!

I took Morgan and Jonah to a beach, Isaac and I use to go to a lot while we were dating. It was a breath of fresh air to climb down the rocks and have nothing before me but the beautiful ocean and my feet sinking into the sand. To my left there was a life guard tower. As teenagers Isaac and I would hang out at this tower a lot! haha, such fun times a time in my life when I was just really starting to understand life, relationships, dreams, love and yet was so naive to what the future held. At that moment I wished Isaac was at that beach with me, holding my hand, making up dreams of what our future would hold for us. I look back and laugh, we sure had no idea what was in store. I don't recall ever talking about how we would handle a special needs child or the divide it would put between us.



Maybe it was for the best, for us to not have this planned out.

We have become so much more by taking it in day by day, at our own pace. We have become a stronger team. I have become a better wife and he a better husband. I am learning that this is not something I will ever be able to do on my own and I am grateful for the breaks and down time that he gives me. I guess I need to start learning how to use that time more wisely so that I can be all that I can for Mo and Jo. I am realizing so much from one 48 hr trip, this little Va-Ca was what I needed, though it didn't clear my head like I had hoped, it helped me realize I can no longer do all that I used to be able to do, I can no longer handle the amount of stress I once was able to juggle. all in all this is not a bad thing, I just need to get familiar with the word "no". I need to stop putting myself out there when I know it will just be to much for me.

I just don't know

The soul would have no rainbow had the eyes no tears.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This weekend has been hard. Much harder then I imagined it would be and today I find myself crumbling.

I took the kids with me on a little get a way trip to Cali, I will post about it tomorrow. To days post is me just feeling beaten down and discouraged. I need advise I need answers because people, I think I'm falling apart.



I am at a loss as of what to do with Mr. Jonah. He is wearing all of us down. Our new motto: If Jonah ain't happy, ain't nobody happy...so hurry up and make him happy! It's the truth! He causes so much tension and stress, and frankly I just need a break. The biting is getting worse, the head banging is starting back up, and in a 18 hr period Jonah has pulled his feeding tube out 2 times.

He pulled it out in the night (I didn't go in when he was crying after waking)and out it came...balloon in tact full of 5cc of water. Of course I didn't know this until I went to his morning feeds and saw he had a huge rash and no G tube. Because it was out for so long the hole that the tube goes into had closed. Morgan, Jonah and I sat up at the hospital for 5 hours!! This was so insane, and such a wast of time I was pissy as could be.

While his lungs are sounding better his behavior is getting worse. Tomorrow I will call his behavior specialist and see if we might be able to get in to see her on a more regular basis because I just don't know what to do any more. He has become so violent towards me/ It just makes me sad, I know he is just frustrated, but I can't read his mind, I don't know what he wants. The whole right side of my face and neck are scratched up. On the plane to Cali he gave me a fat lip, that is bruised and painful today. I don't know? I just don't know any more. I am so frustrated. I am so tired and my heart is sad for my Jonah.