New Tastes

So this summer has been the summer of new tastes for one of our children.  Kristofer has had oral and texture struggles since he was little.  Certain foods, tastes, smells, textures, and even the way those foods look could send him into major gagging and even at times vomiting.  Some foods I would have to cook while he was out side or at school such as hamburger.  The smell of it cooking would send him into major meltdowns.
  This summer I told him I wanted him to try something new every week. It actually started earlier but I have pushed a few things this summer I didn't think I would get him to try.  But it has paid off!  Here are just a few things he has tried this summer:

 Chocolate covered bananas with nuts.  He wasn't fan of this at all.

 Nutella on graham crackers.  LOVES IT!!!  In fact this is a huge step for him. To put something like Nutella or even peanutbutter on something other than a spoon and eat it together was a forbidden task till this summer.  He has fallen in love with it.  I am so happy about this because Nutella although has cocoa in it is made from hazelnuts and I have found a way that he can have a "sandwich" for lunch at school now.  It also made this week's picnic at the lake enjoyable for him and the other kids. :)  YAY for Nutella!

 Peaches!  His first try was tonight and he LOVED them.  The ones we had were a little bruised so that upset him but the parts I was able to cut off with no bruises he LOVED!  Oh and something about fruit you have to understand, any fruit with skin on it such as apples he always has to have the skin taken off.  So when I explained you eat the skin on peaches he was a little dismayed due to them being fuzzy but we washed them and took the fuzzies off and they were good to go.   YAY! 

Plums...NO WAY! TOO GROSS!  Just not a favorite of his but he did try it as well!  The fact that he is willing to try the new fruits is remarkable.  I am excite because everything he has tried has new and different textures, tastes and smells...very big deal!

Ah yes can not forget the pineapple.  THANK YOU SPONGE BOB!  Kris loves Sponge Bob.  Has since he was super little.  I told him if he was going to be a Sponge Bob fan then he had to try pineapple.  I know what was I thinking?!  But he tried and wasn't so sure about it.  He said he wants to try it again so that's another big step.  Now if I could only get him to eat something other than chicken strips or tenders.  Just another meat source other than chicken or bacon.  Those are literally the only two mean sources he eats.  Anyone else out there with picky eaters have some helpful suggestions?

Mrs Jennifer Lane

This is Kristofer's favorite person at school I would like to finally introduce you to Mrs. Jennifer Lane. She is Kristofer's OTA. She has been a life line for him and for us. Jennifer has gone above and beyond this year with him and has helped him in SO MANY ways. She is the sweetest person and I can't thank her enough...Jennifer if you are reading this...WE LOVE YOU!!!
Jennifer did something for Kristofer that we believe is going to make a difference for him this coming school year. If you remember back in Aug-Oct Kristofer was not transitioning well into 1st grade. He basically was close to having a small break down. He was having problems at school as well as at home. Jennifer stepped up her game and made a difference in his life. I just can't say enough about her. Yes this year has been one of learning and growing for him and us. Finally having an understanding about what's going on with our little guy has helped. But I know that Jennifer's constant help through the week with him and for the teachers working with him made this year a success. We are so proud of Kristofer and all he has accomplished this year. There are many things we still have to work on this summer to keep him on track and possible get him closer to where he needs to be on his reading. He has done well, grown and changed.
Jennifer took Kristofer last week and introduced him to his 2nd grade teacher, even wrote out a social story book for him and Mrs. Van Horn showed him around the classroom. We love Jennifer and know one day soon he will no longer need OT services but we believe we have a friend that will always be there to help if we need him.
Again Jennifer you have been a HUGE blessing to Kris and to us. THANK YOU so much for being exactly what Kristofer has needed as a support this school year and last.

Sensory Processing Disorder/Autism

Today on the Today Show on NBC they did a segment dealing with Autism and sensory integration. Kris deal's with both issues but when he was younger all we knew was sensory issues. Sensory issues is a real problem even now for Kris. Just last night he was on noise overload. The tic toc of the clock, the typing on the keyboard, the swirl of the fan, the humm of the fridge was throwing him into tantrums and it took us 45 minutes to call him down. Those sounds specifically were bothering him let alone the noise his siblings were making. The segment was very well done and very cool...go check this out! click on ---> VIDEO

Autism screening tops Obama's medical to-do list

Autism screening tops Obama's medical to-do list
Nancy Shute U.S. News & World Report

Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda on Whitehouse.gov . Heart disease and cancer don't get the call. Neither does diabetes, or other chronic diseases.

But there are four hefty bullet points addressing autism. Obama called for:

1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.

2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.

3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.

4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.

That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.

The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn't appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president's inaugural address won't mean big cuts in funding.

Still, universal screening for autism will be a huge challenge. There's no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.

The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don't get around to doing those screens, and until very recently the recommended tests weren't sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.

(c) 2009 U.S. News & World Report
Copyright © 2009, Tribune Interactive

Autism is not a tragedy Ignorance is!

Autism Awareness

Cure Autism Now!

Autism is not contagious!

Yep Autism is the theme this month!

Autism will affect you....there may be a child in your child's class!

Autism is Real!

Florida Teacher Who Held Vote to Kick Autistic Child Out of Class Loses Reinstatement Bid

Florida Teacher Who Held Vote to Kick Autistic Child Out of Class Loses Reinstatement Bid

Wednesday, April 01, 2009
Associated Press


PORT ST. LUCIE, Fla. — A kindergarten teacher who held a vote to kick a 5-year-old autistic student from the classroom lost her appeal for reinstatement.

An administrative law judge Tuesday upheld the St. Lucie School Board's decision to suspend Wendy Portillo for a year without pay and remove her tenure.

• Click here for a video.

The school district determined that Portillo violated the state's code of ethics for teachers and school board rules in May 2008 when she allegedly asked the class to vote whether the boy should stay in the classroom. The student, who was in the process of being diagnosed with Asperger's Syndrome, had been referred twice to the principal for discipline problems.

He lost the vote 14-to-2.

Hundreds of parents of autistic children signed an online petition to get Portillo fired for her alleged tactics that mirrored the reality show “Survivor.”

The boy's mother, Melissa Barton, claimed her son was punished for symptoms of his disability, such as humming and eating his homework. He didn't return to school after the incident and told his mother he felt sad about it.

April is Autism Awareness Month

Autism Awareness 2009

Something new

My dear friend Angie made me this to add to my blog! Isn't she sweet! I love it Angie! Thank You!!

Diagnosis Given

Yesterday was the big day for our family. We finally have clarity with Kristofer.

Not really a surprise, we have suspected it for a while now. But the reality of it is overwhelming. Has it changed anything NO! We just now have a clear understanding as to why Kristofer is the way he is. Having the diagnosis will help in school. It gives us a place to start. Did I want this diagnosis, no - not at all. But it does validate all of my thoughts and feelings about what we have been dealing with. In our case I can honestly say that I DO NOT feel that it was caused by vaccines. The signs were there before he ever had the MMR vaccination. Our pediatrician at the time just was not, hmmmm, how to put this nicely....uhm aware of and did not listen to us. I'll admit that I did not push hard about it till he was 3 and we really started seeing how different Kris was from other children. Up until that point we just kept thinking it was his ears.

It's been a long road to get to this point. His behavior in the beginning was blamed on the never ending ear infections he had. Then one summer right after he had turned three our dear friends, Mike and Marty Short, came to visit us. They had just been given the diagnosis of autism with their oldest child. We asked them to watch Kristofer and tell us what they thought. Honestly, Marty had told me to read "The Out of Sync Child" about Sensory Process Disorder. I did but only so I could understand a little bit of what her son was dealing with. I refused to accept that Kristofer was dealing with those same issues that spring. But by summer and listening to what they had to say, listening to Mike (who is a special ed teacher) we decided to start pushing for help. When I approached our pediatrician I told her everything I knew at the time about SPD. She looked like a deer in headlights! No kidding here. She had never heard of it, but I continued to press for a referral. She sent us to a Behavioral Therapist. We started "play therapy" where the therapist worked on behavior modification. I kept asking her if she thought he was autistic but I never would get a straight answer. She referred Kris for occupational and speech therapies. So we started those. We began to see big changes in him. The behavioral therapy honestly helped us more than him, teaching us how to deal with and redirect his behavior.

When Kris was four and had been in therapy for a year I asked the therapists to be honest with me about whether he was autistic or not. They said they weren't sure but he did show signs and it could just be the SPD he was dealing with. So we enrolled him into pre-K at the therapy center. That fall we accepted the pastorate here in Illinois. Before moving Kristofer came down with a terrible ear infection. So we headed to the doctor, during that visit I was told they had finally (after a year) read the reports they had been sent from the OT, Speech and Behavioral Therapists. She was going to refer him to a pediatric specialist to be evaluated for possible autism. But we would never have been able to do it because we were moving in two weeks. The wait to see this specific doctor was 3-6 months. So we moved to IL, got Kristfoer enrolled into pre-K through the school since he had an IEP already. We began asking questions about having him evaluated. The school was reluctant because they were not seeing issues with him in Kindergarten. He was just a quiet boy, who stayed to himself. We knew different, something was amiss with our little guy.

So at the end of the school year after finding a family doctor that agreed with us, we started the process of finding out what exactly he has been dealing with. We truly believe God placed us in IL not only for ministry but also specifically for Kristofer. SIU has a wonderful research program that is connected to the Autism Program of Illinois. The center offers therapy services as well as a resource room for parents; with books, videos, computer programs that can help you create a variety tools to work with your child. For this I am so grateful to be living here in IL! So now that we have clarity and have given the full report to those that needed it in the school system, we feel like now we have the foundation on which to base his therapies and other helps at school on. We are not devastated by this diagnosis. Relieved but still overwhelmed with all the thoughts we have about Kristofer' future. We know God has a plan for his life. His Word tells us that, "He who began a ood work in you is faithful to complete it." God does not make mistakes, everything about God is perfect and Kristofer is one of His masterpieces that he is still working in and through. So we place our trust in a BIG GOD who has a plan for him and us.

I have to publicly say thank-you to all of my friends, family and "sistas -ya know who ya are!" for all the encouraging words yesterday and the last few weeks. It's nice to know we have a support system out there standing with us and praying for Kristofer and us.

SIGH!

Let me say that again... SIGH!!! What a week! A very long week! I would like to say it was a glorious, victorious whopper of a week. But actually I feel a bit beaten up! I hate it when everything seems to be going well and WHAM! you get a good swift kick to the gut. You know the kind...the kind that either knocks you off your feet, knocks the wind out of you or both!

Not sure which I got this week but it sure was a nasty hit. Let me explain because I haven't actually blogged about it. This week out of no where we get a note from the teacher. Now last week when I talked to the teacher she just said Kristofer gets frustrated sometimes. So the letter we got this week was a huge hit. It basically said, that he has not only been getting frustrated but having huge meltdowns and crying episodes. He never did this last year or not that we were ever told. So what is a momma to do...go to bat for my kiddo. I go in and talk with the teacher the next day after I called his OT who gave me her home number in case of situations like these. Then later the same day I talked with the teacher some more and then talked with Kristofer's resource aide that works with him daily as well. They paint this picture of a child who is extremely stressed and frustrated. Naturally that upsets Momma!

So we figure out some things to do to help him. In the mean time today was

the big evaluation at SIUC. There Kristofer was taken into a classroom where Melanie one of the evaluators and three others worked with him. Actually the other three were taking notes. I was in an observation room watching and talking to Dr. Bordieri who asked me a bazillion questions, I swear. Every one at the Center for Autism Spectrum Disorders are great! They make you feel at ease and take time to listen to what you have to say. I truly believe God ordained this time for this moment at this facility.

So we went, were there for like 2 to 2 1/2 hours and then came home. We now have to wait for the next week as they decipher and score the results of the evaluation. The hardest part now is going to be the waiting.

For those that have gone through this process any advice or suggestions would be great! For those that haven't let me just share that this has been the longest 6 years of our lives. Yes 6 years because from the time Kristofer was born there was something different about him. Oh don't get me wrong please, he was a cheerful happy little guy as long as we were following his schedule. If we were not home on the dot to put him in his bed for naps and bedtime...he was a mess. There are so many things I could say here but won't go through it. But when you deal with a child that has special needs it is draining. What is worse is when family members think you are crazy and that there is nothing wrong with your child. "You need to discipline him more, be firmer, ect...You're just doing what a good mother should do" Yes I heard those things! From people who were suppose to be supporting me and their nephew! It hurts when you hear them say, that kid needs medicine, that kid is a brat, or I could never deal with that. Well let me tell you something....my kid is not a brat! He is a joy to have and if he needs meds (which he doesn't right now) then we will do what needs to be done.

Honestly I am so emotionally spent this week I am not sure what I want. Yes I truly want to be told "No we don't think he is autistic!" BUT we need clarity as to why his behaviors mimic autism! Ok let's be honest, there is a part of me that would like to hear he is on the autism spectrum just so I could say, "I told you so to those people that have questioned my parenting skills!" But in my heart I do NOT want him to autistic. No parents stands up and says, "yes please I beg you give me an autistic child." NOT that autistic children are trouble or a curse. Because they are not! They are God's creation and there for created in His image and are perfect in His sight! There are not many people that will stand up and honestly say, they were overjoyed to get that diagnosis! I have two college roomates that have one or two children that are autistic and another that has a child with SPD. They are very strong advocates for their children. They have dealt with the sorrow of the dream of a certain life for their child and watched it be changed to something else. They have been strong and faced it head on and for that I am grateful because they have been the support I have needed...thank you Mike & Marty Short, Angie Young and Mary Fontelez! Little did we realize 14 years ago that not only would we become the best of friends but also friends that have special needs kids. What an adventure we have all been on!

For those that wonder if your child needs early intervention GO GET IT! FIGHT FOR YOUR CHILD! I was told today by Dr Bodieri that the intervention Kristofer has received has given him a huge advantage over the child that hasn't received therapy or any kind. I know for sure had we not listened to our friends and pushed for therapy that Kristofer would not be the same little boy he is today!

He is such a trooper! He deals with so much all the time. He amazes me! He really does! Yes he wears me out, yes he drains me physically and emotionally when he has his outbursts, yes sometimes I get very aggrivated that he doesn't understand things that other kids his age do, yes it makes me fighting mad when other kids tease him and make fun of him or won't give him a chance! BUT this great kid of mine is my heart throb! He and I have a connection that is different from the other kids. I love them all equally and I would stand in the fire for each of them. But somehow Kris and I have a connection that he does not have with Sean and I do not have with the other kids. Call him my favorite....no because they are all my favorite but...ok yes I have a connection with him that is special and unique and I am blessed to have this remarkable little boy as my son! I am proud to say KRISTOFER IS MY KID! I am proud of his accomplishment and I am excited when he meets a goal.

Everyone that knows our Kristofer can't help but love him. He is such a great kid! A little quirky at times but a great kid never the less!

Adventures with Kristofer

I haven't posted anything lately of our adventures with Kristofer other than the ball he swallowed...that was just so much fun! (sarcastic here!) And just the other day he had a small lego in his mouth...what am I going to do with that boy?!?! (LOVE HIM!)

But for those that care to even know or even pray for us we are finally embarking on the last leg of this adventure with him. Or so we hope. At least to find out if he is or isn't autistic. Here is what I know for sure...he has SPD (sensory process disorder). Now here is something else I know - "Studies indicate that at least 80% of children with autistic spectrum disorders also have SPD. This means a lot of kids with Autism have behaviors that are seen in "sensational" kids. But the reverse is not true: Only a fraction of kids with SPD also have Autism. None of the sensory symptoms of SPD are part of the diagnosis for Autistic Spectrum Disorder."(according to Lucy Jane Miller, PHD - leading researcher of SPD). Did that make since?

This is why we want to make sure we are not dealing with just one thing. If we are great! But if we are also dealing with autism or some where on the spectrum then we need to know. We have been trying for 3 years to get someone to tell us yes or no. We started with behavioral therapy which to be honest did nothing for him, more for me learning how to deal with some issues he was having a the time and still has. Then we started OT and that is where we first got the SPD diagnosis. Kristofer deals with sensory seeking issues (most of the time) but he also deals with sensory defensiveness. He goes from needing as much input to a major over load and we need to just sit in a quiet room hugging him tight to get him to calm down. It really depends on what is going on at the time as to how he will respond. He has major auditory defensive issues. When he was 3-4 he would turn the tv as loud as he could and would say he still couldn't hear it (his hearing was fine according to testing). Other times he would turn it down so low we couldn't hear it and yet it was too loud for him. Now, he still has issues but has managed to get through the too loud and too soft issues with the tv.

He still has issues with noise of any kind. There is not a moment that goes by that he will have one or both ears covered. During our praise time at church he would much rather be in his daddy's office, in the nursery or sitting in my lap with his fingers covering his ears. Now let me just share we only have a guitar and an electric guitar during that time. We need other musicians right now, we have the instruments but no one to play them. When we have had visitors that can play the instruments it really sends him into orbit. But he loves to play the drums. Usually with one hand and one in his ear.

Anyway, this Friday, the 19th, we will be heading to SIUC for the 2nd level of evaluations to determine if he is in fact dealing with autism or is somewhere on the spectrum. If you remember me writing about the first level assessment, it wasn't clear and they saw many traits and behaviors but not enough to say a definite yes. Thus the reason for the 2nd level eval.

To be honest when he was much younger I would have said yes without hesitation. In fact I did and kept asking our doctor to have him evaluated and it wasn't till 2 weeks before we moved here (after about a year of therapy and asking) did she say lets get a clearer picture of what is going on. Honestly at the time I wasn't emotionally or mentally ready to even think in that direction. I was happy with the SPD diagnosis. Ok yes, this is about him and not me. But during that time I was dealing with a 4/5 yr old as well as twin babies. I had so much on my plate the SPD was a relief and we were seeing HUGE improvements. OT and Speech therapy opened up a way for him and us to communicate and we were seeing big stuff.

Call me a bad parent for not changing doctors or not, I really don't care what you might think. To be honest at that time in our family's life things were a bit strained in every aspect. Did he fall through the cracks...NO! He was getting all the therapy available to him. For that I am thankful. Do I wish I had pushed harder for more evals...maybe but I can't change the past I can only change the future with God's leading.

So like I said we are heading to SIU this coming Friday. Because this is a research program it is free and I was told I should know a lot at the end of the evals if not everything. That would be the best. I believe this time is an appointed time. We will get clarity before we go into IEP meetings with the school in Nov. and that will help a lot!

Also thought I would share a sensory activity that we had a couple of weeks ago. So enjoy these pictures! They kids had a ball and we had a mess to clean up but it was great fun for them and I was amazed at how Kristofer responded to it. We received a package that had a ton of those wonderful foam popcorn pieces. You know the kind, they stick to everything and are hard to get rid of. Well the kids dumped them on the floor and started jumping in them, rolling in them, throwing them and were laughing hysterically. By the time they were tired of the game we had crushed foam pieces everywhere (for days) that we vaccumed up. It was the first time I didn't flip out to be honest. Which was a huge improvement for me. They had a blast and Kristofer benefited sensory wise! I am sure the other two enjoyed it just as much as he did.

Steel Marbles....

do not belong in your

mouth Kristofer!

Yes that is what I had to re-explain to him tonight at bedtime after we

had called IL State Poison Control. Oh what that boy does to me! I think I must shake my head more about him and his antics than any of the kids. Last year we dealt with him swallowing a very small watch battery and now this. Thankfully it was only one, but still!

Why Kristofer WHY?!? Why does a 6 year old put a steel marble in his mouth! Why do kids put things in their mouths other than food?! This drives me nutty honestly! But,

I actually know why...its his need for oral stimulation. But we have his chew sticks for that... oh the joys of Sensory Processing Disorder! UGH!!!

What's worse is I let them get the stupid toy! It was a free toy (Magnetix type of thing) from Toys R Us! Both of the older boys got them when we went to the store last week, using the money their Aunt Michele and Nannie gave them. It was marketed for children over the age of 3. Kristofer is 6 years old! SO I honestly didn't think twice about it. In fact all week the four of them have had a blast playing with them. I was even considering getting them for the kids for Christmas. Kristofer loves to build things and this was something new and fun to do.

Now before you send me a million comments or emails about the recalled Magnetix toys and all the stories that have been in the news, let me reassure you I have read the articles myself! But honestly I have been observing the kids playing with these little kits and they have been fine. UNTIL tonight. I thought I had them put away...little did I realize that Kristofer had gotten them out again.

So I get the fun "search & rescue" mission for the next few days till it appears. UGH! Oh the joys of that! NOT! I would much rather deal with marker on the wall than my next mission!

Sigh! The joys of motherhood.

Thoughts I'm grappling with....

Some of you may wonder where I have been the last few days. Some may not care where I have been. That's ok too! To be honest I have been grappling with what to write and if I should write. I have been grappling with if I am doing the right thing for Kristofer or not, as well. Some people when I tell them we are looking into evals for Kris to see if autism is a factor in his behavior look at me and say, "It's about time!" Other say, "He is fine, you just have to discipline more!" And still others say, " I am making up the behaviors and he is just fine!" It's the last two responses that really make me mad! They have no idea what it's like to live with a child like Kristofer. There are days that, "yes he seems like a normal little energetic boy" and then there are days that, "he seems to be somewhere else and you have to draw him into your world!" Many days it seems like the later.

Today was a mixed day. It was skate night at church so off we went to the skate rink. All of the kids grabbed a friend and off they were, having a blast! Kris loves skating and for not being the most balanced kid he does fantastic! But as I watched all the kids, he was alone most of the night unless Jaron went and got him. He pretty much skated alone to his own music in his head enjoying himself but alone. When I asked him if he had fun he said, "oh yes I like skating!" I asked him if he felt all alone since no one skated with him, he says " no, I like being alone, I don't have to talk to people then!" When he makes statements like that it breaks my heart. Yes I am happy that he is happy being alone but at the same time I wonder if he even understands what he is missing by "being alone".

I asked him once what his world is like, "its quiet!" was his response. He likes quietness, so do I but not all the time. He is a remarkable little boy! And so as I am filling out the GARS-2 assessment forms and filling out other forms for SIU I wonder what they will tell us about Kristofer. I know what the Bible tells us...He is wonderfully and marvelously made by the Creator of Heaven and Earth! He is our miracle and no matter what a piece of paper may say about him I know My God in Heaven has awesome plans for him! I hold on to those promises and will till they are completed in him.

Oh I should share, God has remarkably opened doors for us. Kris is being assessed for autism through the school district but is also going to be evaluated at SIU (Southern Illinois University) at their Autism research program! They also offer therapy services! We have been told that they are the top of notch when it come to this program in the state and in the nation. Whats better than that...the college is only 40 mins away! So God is working on behalf of our Kristofer! You see he is a child of the King of Kings and God's favor is upon our Kristofer! We hold fast to that and claim that for him!

SO that is what this momma of four is thinking and grappling about. Just trying to do my best for my boy and for his siblings as well. Man, motherhood sure is tough....to bad it doesn't come with some kind of written manual...oh yea...it does....it's called the BIBLE!