Breakthrough!

Yesterday was quite the day but I would have had it over and over just to have the day I had today. It was crazy with getting Eli's allergy shots sent. My Sister in law (who has been giving Eli his shots so we don't have to go all the way to Overland Park twice a week.) sent in a fax for a refill and they never sent it. So, thanks to  the office, Eli is going to be late on his shots again, but we are so thankful for what his Aunt is doing for us to make things a little easier. I also finally got Eli's medical supplies in but, in the wrong size. This stuff always happens. I think maybe it just goes hand in hand with having a special needs child when you have more then one or two physicians, therapists, medical equipment, blah blah blah. Anyway, Yesterday wasn't a good day for Eli at all. He seemed confused and tantrum ed quite a bit. He seemed more aware of things to the point that it irritated him which of course the awareness is great, but to the point of freaking him out? His little pillow pet Lion he has pretty much disowned because I showed him that he makes snoring sounds when you press his head. (It's actually really cute!) He totally freaked out and now "Lion 2" has been put out to sleep at the bottom of the stairs because he snores and that's to weird. Why didn't I show him this sooner? He got him for Christmas, and I forgot. Okay, now some parents wouldn't be so impressed by this, but I was totally excited! The fact that he didn't stim, he actually was thinking about what was going on, and the fact that he made his own opinion!!!! Yay! Then, Mike was working on him with asking his name and age... He actually was able to answer! So, today I let him go to school and when he got home he was pretty tired, so he took a nap. When he woke he was so happy and just "here with us". He would look at me and dance with me! He also has never been able to put the home phone up to his ear because of to much sensory but not only did he do that, He carried a little conversation the best he could with his Grandma LaVonne! He was so proud of himself that he actually was able to communicate and  I was so proud I cried and have been thanking God all evening.

We aren't out of the dark with all the medication switches, but we are so thankful for finding this new doctor. The fight over a few weeks of being on the phones and two days of going to different centers and hospitals was all worth it. Elijah's Pediatrician is amazing and they helped lead us until we got the help we needed. So, now we seem to have two doctors that are keepers.

Eli has gone back into his own little world by bedtime, but from the day we have had I can't do anything but smile because today, even for a little bit, I had my little boy in my world.

Thank you to all of you who have and are keeping little Eli and our family in your prayers. Today, some of these prayers were truly answered.
Thank you for all you that inspire us to keep pushing forward and for the support and the understanding even if at times you don't. The phone calls, emails, and even quick posts mean so much. Thank you.

Sketch

Just something I drew while Eli was sleeping in my Lap. =) One of Eli's Favorite colors are Green.

Elijah's New Meds

So Eli started his new medication on Saturday night. So far he has done really well and no bad side effects. He is thirsty and hungry all the time it seems though... Not something I can complain about! The doctor said that could happen. He is sleeping better at night and hasn't needed most of his night medications to try to get him to sleep. He does seem to have a sense of being more aware of stuff that is going around him though. I know he is restless, and no school for him today because he needs to be monitored. Hopefully, if I feel comfortable.. He will be able to go to school tomorrow. I know he misses it!
He and Car haven't gotten alone to a T, but last night Eli let his little brother lay next to him while he played mobigo. We look forward to the next few weeks as he gets more adjusted!

BTW, The doctor put Eli on a FDA approved medication to help with Autism symptoms.

My Little Man.....

This is a video I made just now while we were playing and watching wipe out. He is sooo Cute! These bouncy balls are awesome and both my boys love them. I remember bouncing my heart out on these when I was little! I would have cut some of the end off but I have no clue how to edit video! Yet. =) 

UPDATE: Afterwards Eli had a really bad meltdown. I think it was to much stimulation. Most of the time lately he has been needing things to be pretty calm. He will get back to his normal self soon enough. I just know it.=)

Ball Bounce & Sport #15 Fun Hopper

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!=)

Something funny....

Let's hope we don't have a winter like this one. Ever! =)

Thankful

Yesterday and this last week was probably one of the toughest ones I have been through.
Even though I feel like I have no support group like the regional center (because we are still on a waiting list), the right doctors, therapies, and respite, I am very thankful for the friends and family that are always there for us and are consistent. I am also thankful for my beautiful children who are the best thing that could have ever happened to me and Michael. My fears for Eli are simply fears of losing him or the potential I know he has. I want to do anything that will help him and don't want to deny anything unknowingly. As parent's, This is a huge responsibility. Not one we can do without our Heavenly Father.
As for my husband, I have a high respect for him. We have been through so much together. In 2009 the statistics of a marriage staying together with a child on the autism spectrum were over  80% and have gotten higher now. When I said "shambles" (wrong word. I tend to be bad at that.) I basically meant lacking because of how much we have been through. We do deserve so much more for our marriage then what has been handed to us.
Really, I think most men would have skipped out by now. Yet, I have a man that refuses to leave. Maybe things aren't perfect, but he has always been steady on being here and I love him for that.
We are both aware that this year we are going to have to do something pretty drastic to help our little guy and that is a huge stress. His little future is in our hands, But I also know and have to remind myself that more importantly he is in God's.
As much as things can be so hard, there are also things to be thankful for. It's trying to create a balance that can sometimes be tricky.
We don't know what will be decided with Eli, but we thank you for all your prayers and support as Michael and I start looking into things and making some calls to help him for this next year. Especially this summer.

One of my favorite photos of my boys.

Just to Clarify....

My previous post is not a feel sorry for me entry. It is something that I have been given to deal with.
Last weekend I went out with the girls for the first time in years. It was really nice and I appreciate the chance to do that. This is no more then an Autism thing though.
Eli's behaviors have gotten worse and I am just in the next step of adjusting and poor Carter is in the middle of it all. Remember I said that I was going to get Eli in with a psychiatrist at Children's Mercy?
Well, they called me back and referred me to another behavior clinic because they didn't think they could help my son. This even is with the fact that I told them I got them through a patient reference! Another child with autism gets all his medications taken care of through them and yet they can't help my son? If Children's Mercy says they can't help me then who can? It's not like they are referring me to a different specialist or they have to long of a wait list, they simply just didn't want to deal with it. So yes, I am mad and frustrated. I'm tired of doors being closed because of money, or the long wait lists, or simply because my child is one of thousands dealing with Autism and they simply just don't want to deal with it.

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.

Still fighting schedule!

Okay, so remember me saying that I was so excited for Eli to get on the bus and start school a week from yesterday? Well Eli was excited to. We waited, and waited, and waited. No Bus!
So, after half an hour I call the bus company and they informed me that they were called just the day before saying there would be no school for the early education center due to them deciding to have teachers conferences. They didn't tell us and I wasn't the only parent calling in. I am just so happy I wasn't mean and waited to know what happened. It was quite the ordeal getting Eli settled. He was set to go to school and that was all that was on his little mind. Since he only goes to school through Thursday, That meant that he wouldn't have school until the following Monday. Well, due to weather they closed the school all week until today. And yes, he did finally get to go today but now he will have another 4 days without school instead of 3 because of the holiday. He is going nuts not knowing what to think about all this! I feel so bad for him and yet haven't known how to handle his tantrums. He is so upset about this. It's even harder when you are stuck inside!

Michael my husband had an interview for a job that would give us more family time and scheduled hours. Right now he is working nights during the week so I usually never have anyone to help with both kiddos. Especially with errands except for what I can do when Eli is in school. "When he is in School".
I just hope Mikey gets this job, it would be a great step up for us and he would have so much less stress!

This was from one of Elijah's Hospital trips... He is adorable even when things aren't the best!=)

Almost 1 year from Elijah's Fatal Incident

This Saturday will be the mark of one year since Elijah was hospitalized for what should have been no more then a basic surgery to put his mic key button back in since coming out overnight. I found this entry that I wrote when this happened. Thought I would share.

01/15/2010

"Okay so today was supposed to be a good day, and I guess in a way it turned out okay because I feel blessed. Last night Eli said the three magical words "I Love You" (or "I wuv oo") with meaning and without being prompted! I was soooo happy! So anyway, I set him up for his night feed and went to bed about 11pm. Carter his 1 year old brother woke up with a bad dream sometime in the night and I had to get him back to bed. Then I woke up at about 6:30 to Eli's drip alarm going off to let me know that his feed was done.

I turned it off and went to flush the tube and his entire bed was soaked and his g tube malfunctioned. What was even worse is that I tried to put his back up in and the opening had completely shut.
So, I packed everything up, dropped poor Carter off at my mother in laws and took Eli to the downtown children's hospital that we so often seem to frequent.
We ended up in the ER where the Doctor insisted on trying to stick this metal dilating tool into Eli to open the hole back up enough to put the mic key button back in. Well, That didn't work and Eli was screaming in pain and the shock that I found out later from the surgeon was like a stab wound. I told them to stop and he wanted to go a little more but finally gave up because he realized it wasn't going anywhere plus, Eli started to bleed a lot. I was so mad at this point and demanded they give him some pain meds as they then did. The ER Doc then decided to sedate him (He was still awake) and pushed his way to getting the tube back in. I couldn't stand seeing my son on a table paralyzed except for the fact that when they did something drastic his little body would shake. We then had to go through what they call a "Dye Test". This test is to make sure the the mic key button is in proper place and going straight into the stomach. Well is wasn't. The doctor pushed right through the opening with the dilating tool but didn't care to pay attention to make sure he was following the path that was surgically placed. See, when the doctor puts in a gtube he makes a path and sews the stomach lining in a way so the food can feed through properly . So by his neglect, Eli started bleeding internally where they then put him straight into surgery. To be honest I didn't know how close I was to losing my little boy until after they had sedated him and wheeled him away. That is when the surgeon told me how fatal this was and he would do everything he could.  Eli had already started a fever, and was showing signs of the starts of severe infection. Luckily, the surgeon was able to catch it in time and was able to stop the bleeding and clean it up. He had bled quite a bit. It's now about 4 hours past surgery and he still has a slight fever. The surgeon said that I had been right and it was because of the dilating tool that the doctor in the ER used. I know that the Dr. knew he had done wrong because he came in kinda mean and afterwards was kind of a suck up. Eli isn't completely out of the woods yet and we will be in the hospital for at least a few more days if not more. I am just so happy to have my little boy back. It will be hard to be away from Carter but he can't be here and Mike works on weekends. Mike my hubby actually finally showed up and left work early when he found out Eli was in surgery. I love him for being there. I already miss both of them. Carter is going through that "I just want mommy" stage so I know this is hard on him to.
I am so tired and have such a headache from crying and lack of sleep. I just feel blessed right now, I have my baby and nothing else matters."

Let me tell you that I do look at that now and go why didn't I sue the hell out of the doctor?
Well just so you know I did everything I could in reporting the jerk because no other child should ever be seen by him again. But, I think at the time I was so overwhelmed with what was going on that it was one more thing. And I just couldn't handle it. 
Anyway, One year later and I am so glad that there have been no more problems. We went back to the same surgeon for a follow up in Feb. which is when we decided on the Gtube he has in now and it's been great. I feel truly blessed for the surgeon that was there that day. He exactly what a healthcare professional should be.




So, This Saturday January 15th, 2011, let's all raise a glass, and thank God for our blessings!

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.

Schools and Winter Break

So many children look forward to winter break. For Eli it is different. A child with Autism likes schedules and when things change, it makes it hard for them to adjust. I really think they should have a program for special needs children or at least an option for them to continue school. I understand the teachers need a break to but 2 1/2 weeks? That is a little excessive if you ask me. Especially when my child is only going for 3 hours Monday through Thursday. I think everyone has their opinions on this subject and I understand that people can't just coddle to my child. But, my holidays are long and hard with a child who feels off balance and doesn't understand why.

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

Starting a New Year

With the thoughts of the new year I find myself looking forward to seeing how fulfilled I can make it.
I am not making any new years resolutions this year simply because I just want to do my best and forget the rest!
I would like to make 2011 a great year and turning point for my little family. Elijah who just turned 5, I hope to be able to make a huge improvement on his development. Carter my 2 year old who is a social butterfly needs to be around children his own age so he can learn and grow. And me, Well I need to take care of myself better. I plan to try to make time for myself and not get so stressed out all the time. I am normally not a stressed person, but if you have a child with autism you know it is virtually impossible!