Doctor, Doctor, Who's Got a Doctor?

Well, since I last wrote which has been quite a while in Blogging life things have been quite crazy. Eli had that "awesome" day and then all of the sudden things seemed to go downhill. I went as far as trying to call any place that will admit him to make sure his medications weren't giving him a bad reaction. The thing with clinics and psychiatric hospitals are that there always seemed to be a reason for my son not being able to qualify. I kept hearing "We can't take him because of his Gtube, and we aren't set up for that, we don't have the right program for someone with Autism, and.... "It's sad, there really isn't anything like what you need around here and you would think there would be. It seems that this issue has fallen through the cracks."
The other issue is that it all comes down to money and funding.
It's been a very tough last three weeks.
That being said, The doctors appointment went well yesterday and we were able to get more resources. I think we might have a break through. They are adding a medication to help with Eli's focus, I will start his first dose tonight and it could take a week to see a real difference. What I realized is that yesterday was our "real" first appointment since we were sent up from the ER last time for a emergency visit. We have two psychiatrists there now that are working together so we are feeling a little more comfortable. Now that I am finally getting somewhere in that area..... On to the next thing on the list. Today I called for a study that I can't believe how much of a run around we get just to push to get one service/issue taken care of! But, It's all worth it for my Baby!!=)
GRRRR!

Meet Sarah Daisey Van Diesel

Sarah Daisey Van Diesel is a world-renowned artist with autism. She paints fantasy-medieval art and is also a writer. Sarah is very active in autism awareness and anti-bullying amongst children and adults alike.

Artist and Autism - National Autistic Art | Examiner.com

Sarah is both a beautiful woman inside and out. She is probably one of the most amazing people I have seen with her amazing talents and love for others on the autism spectrum.

You can follow her on Facebook at: http://www.facebook.com/SarahDaiseyVanDieselArt?v=wall

New Beginnings

As you know poor Eli has been going through a tough time. Yesterday, his doctor wanted him to go into observation and to be able to make sure his medications are right. We went to a center last evening which they could not take him because of his gtube. Then through random phone calls we ended up at a great hospital we hadn't been to yet who did a follow up with Eli and got him in with a one of the best Psychiatrists in Kansas City that specializes in Autism. Both Michael and I really like her, and Eli seemed to also.
Further, we found out that some of the medications Eli has been may have not either been right for him, or recommended properly. We are very grateful to have someone that seems we will be able to trust and is very careful what she does. I know the next few weeks will be tough on all of us, Especially Eli with the changes... But  we hope he will start feeling better soon.
My mother in law is taking care of my two year old which is such a blessing and we are thankful to be close so we can still see him while Eli goes through a major adjustment this week. I can't wait to have more of my little boy back. It has been so tough, mostly to see how much suffering my little boy has gone through.
And yes, It has made me very angry at times and at a loss but the love and passion I have for my children, there is nothing I wouldn't do. Michael took off work last night to be there for us and went today so I know he is going to be so tired when he gets off of work. He really stepped up and I am so grateful for him being there even though I know he really couldn't afford to take a night off.

Isn't he just so cute!

Eli was in a great mood before going to bed and his little smile and giggles just make my heart melt. I tried to call to say good night to Car, but he had played so hard with his cousins that he passed out. Believe me, when I see him tomorrow he will get so many kisses and hugs he won't know what to do with!=)

Which is better?

Dealing with the issues of your child getting older and not making enough progress is a parent's worst nightmare when having a child on the Autism Spectrum. Behavioral issues and everyday tasks get harder to accomplish as your child gets stronger.
I have an aching fear of my son ending up in some home for the rest of his life. Or, if we have him on medication to control him he would live at home until we pass and then end up in the inevitable. Either way, It's not a life. I have been able to work with Eli and teach him things others didn't think he would do. They wanted me to give up on him talking and instead just use picture exchange. Seriously, they said he would never talk.
I didn't give up and didn't let him because I knew he could do it. Lately, I have been researching Autism programs that might be "fast track" because lets face it, Eli doesn't have much time and his stubbornness is proving that it is a matter of time before I feel that window is closed or at least so jammed up you couldn't pry it open.
There is a place in Wichita, KS Called "Heart Spring." They have day and residential programs for children ages 5 and up. I hate the fact of Eli being away from home.... But I have the fact of him being away for the rest of his life when I can no longer physically handle him. There is a jump start program where your child stays for 3-9 months and they are able to have a staff implement a schedule, take over his IEP, And just help get things manageable. I am really thinking about calling because after this summer Eli will be in School. He will be in school, almost 6, wearing diapers, and I can't think about this anymore.
Even worse, He knows he is different and it bothers him. Autism doesn't mean mentally retarded although some children can have a combination diagnosis of that. Eli doesn't. He has failure to thrive and Autism along with a panic disorder. Last week I went to the psychiatrist and just broke down when he asked "who is there to give you breaks and relieve you? Really for the most part unless he gets to go to school for those three hours or I can run errands on the weekend when Michael is home, There is NO ONE.
And yes, so that means no time with just my husband either. Well, that is unless we hire a babysitter... Which we have an amazing one, But we can never afford it. And let's face it, it's really no secret that our marriage is in shambles and we are just tired all the time.
I feel like a blubbering fool throwing all my pent up feelings into a blog post for everyone to read and have their own opinions on. I have not forgotten God and that he may have different plans then what I see, but this is my life and if blogging about it helps me to cope, then who cares what others think.

New thoughts on this blog...

Okay everyone. I have decided that this blog is soooo BORING! Pursuing Recovery?
Well first, let me tell you that I will continue to help my child get better in any way I can. I honestly think though that if God wants Eli to be Autistic, he will stay Autistic no matter what. It is my job to help him cope and do anything I can to lessen his symptoms though.
I know I just started this blog, but the fact is that it has made me have to face facts that I have been ignoring forever. I don't want to be depressed and I don't want to just "cure" Eli. I want to help him to function and grow as much as he can without having false hopes that make me feel horrible if he never loses the title of Autism. Elijah is smart, funny, cute, complexed, completely nuts, and I love him.

That being said.....

I am going to put this blog through a HUGE face lift! I will keep my information and track how he is doing, But I am tired of being caught up with the down side. I was reading another moms blog and this is what she had to say about it: (BTW: I highly recommend her blog, She is witty and hilarious!)

Stimey believes rodents are funny, autism may be different than you think, and that if you have a choice between laughing and crying, you should always try to laugh—although sometimes you may have to do both. 
-StimeyLand

Sure there will be scary or sad, or very sad times. I will post the good, the bad, and the ugly. But I have been in a mourning stage ever since he was diagnosed. It's time to move on. It's hard to think of your child being sent to a home at a young age, never getting married, or being able to fully enjoy life. But, I have to sir come to the fact and embrace and love things for how they are. Refuse the bad... and make it good. There is a bright side to every story no matter how little.
I CHOOSE TO LAUGH.

Off Winter Break!

I am so happy that my son is finally going back to school today and we can get back into schedule. It has been so hard for him being on winter break. I think unless you have a child on the autism spectrum, it's hard to understand how tough this adjustment can be. I look forward to his day today and hope he has a good one!
This morning I was able to call the children's hospital and left a message for them to get back with me. Eli has been on meds since he was two years old but no one ever told me that there was a child psychiatrist he could go to! Instead, a general doctor or developmental pediatrician has been handling them and well, it has been tough. For Eli, he needs someone who can watch him closely. We have been in the hospital many times because of off or bad reactions. I really don't want him on medication at all but he can't function without something. Anyway, look forward to seeing when I can get him in. This should make things much simpler. 

Great products! Support our stay at home Mommas!

My Sister Karen has an Etsy site and hand crafts these adorable play food sets. Made of felt, they are soft and perfect for social play and learning!

Felt Play Food Handmade by thewhimsicalgourmet on Etsy

www.etsy.com

Welcome to The Whimsical Gourmet! We strive to make the most detailed, adorable felt play food, for our little chefs. Please visit my

Eli LOVES the MobiGoTouch Learning system!!!

Okay so I got Eli one of these for his birthday and he absolutely loves it! They come in two different colors one for girls, and one for boys. I was a little skeptical at first since we have tried so many different learning devices but this is the real deal and not to mention it seems to be extremely kid tough. I notice he is learning new things from it and we are using it with our reward system so he isn't on it all day. The graphics are great and it teaches many things like learning Left and Right, words, actions and more. There is also a hookup to where you can connect it to your computer and track your child's progress and learn what their weak areas are. You can play with it like a handheld without the keyboard, it has a touch screen that Eli just loves and helps him work on his fine motor skills. I notice that he is actually using his pointer finger by himself more to show me what he wants. If you want the keyboard you just flip the face away from you and it pops up. I find this a wonderful learning tool. Just thought I would share!




Amazon Sells it here: MobiGoTouch Learning System

Adventures in Autism: Death of Elias Tembenis Ruled Vaccine Induced

The Vaccine Injury Compensation Program has ruled that the death of Elias Tembenis, son of Harry and Gina Tembenis, board members of the National Autism Association, was a DTaP vaccine injury.

"Conclusion: Petitioners have satisfied the legal requirements for proving that Elias’s December 26, 2000 DTaP vaccination was a legal cause of his epilepsy and death."

The ruling can be found here.

Developmental Milestones

Do you ever just not know what to teach your child or where to even start? Well, I know I can get pretty overwhelmed and confused. So, I had an idea. If you go to the CDC website they have a list of milestones by age and what you should mainly expect from your child from birth to ages 5 years. I am going to go through and look over each milestone, yes all ages, and make a list of the things Eli doesn't know yet. Then one at a time I will start trying to implement those things so I can cross them off the list as he succeeds. I know some may take longer then others and some may be ongoing work but I am thinking that it will at least give me ideas of somewhere to start and also as to what doctors and teachers will be looking for to see if he knows. If you want to do this to the link that I am getting my information from is: http://www.cdc.gov/ncbddd/actearly/milestones/index.html