Tuesday, March 26, 2013

Pre-Evaluation Screening

I wanted to document today's events so that I have a record of each step in the special ed process.  I was feeling a little discouraged after I left the nurse's office, but I am praying that God has Jacob's situation under control.  All I can do is trust in Him.
Today was Jacob's medical screening with the school nurse at Hidden Hollow Elementary School.  This is the first step in the evaluations for special education.  When we got there she checked his ears for infections and they were clear! Thank you, God.  However, he couldn't do any of the testing.  They had a chart with lines of letters on them for the vision testing.  He can't read letters or say which direction anything is and he also can't follow even the simple direction to look at the board.  He wouldn't even know what the board was.  So then she proceeded to see if he was able to track things with his eyes.  She used a light to see if he would track it and he did.  She then asked if he could track other things besides lights.  She tried a toy, a sticker, and something else.  He wouldn't even look at those items for a split second.  I got out my iPhone and turned it around to the backside and he tracked it.  I told her that it would have to be something that he is interested in to track it.  Based on those observations she passed his vision test, although she said she hopes that they can do a better screening later when he is older.  She also rang a bell when we got there to see how he would respond.  He didn't even turn in the direction of the bell.  She did the same for two more objects that made noises.  He didn't respond.  I told her that he has had his hearing checked 3 times and likewise with vision he will only respond to noises that interest him.  Regardless, we have to make an appointment with the district Audiologist to double check his hearing.  When we got home I whispered,"Jacob here is the Ipad" and he came running.  I know his hearing is fine.  I am glad they are checking him to be thorough though.  He also banged doors the entire time we were there.  He wouldn't look at her when she called him and didn't respond to most things that I said.  I think the new environment was hard for him. 
I know that this journey with special ed isn't going to be easy for me.  Friends have told me it is hard.  One friend told me that she cried every single day after she dropped her son off at class. I can see how that could happen.  He acted like he was completely incapable of listening or learning in the nurse's office.  Each time we do evaluations or anything like this it becomes so obvious that he is so far behind.  It's just not exactly what you hope for as a mom.  Each day is a learning experience for me.  Each time I feel like this, I know I have to make a decision either to let my mind go into that dark sad place or to trust God and stay hopeful.  If this is His plan for Jacob, then I need to be on board.   I am just trying to focus on his strengths and trying to make sure that I see this whole process as something to aid in helping Jacob learn.  I want to stay positive, even through my sadness.
I wanted to update everyone on the garage sale.  We made $872.75! I can't believe how well the garage sale went.  What an awesome blessing! Thank you to all who donated.  Also, one of Cret's best friends and his sister donated $260 so we are already at $1,132.75.  We are $567.25 away from our goal so that I can get Jacob his genetic testing.  Once we do I will be sure to post the results.  Thank you again for your support.  God is so good. 

Tuesday, March 19, 2013

Yearly Evaluation

Jacob had his yearly evaluation from ECI today.  I wanted to share his scores.  In the "ADAPTIVE" category he is equivalent to an 18 month old.  He is 44% behind.  In the "PERSONAL-SOCIAL" category he is equivalent to a 15 month old.  He is 53% behind.  In the "RECEPTIVE COMMUNICATION" category he is equivalent to a 13 month old.  He is 59% behind.  In the "EXPRESSIVE COMMUNICATION" category he is equivalent to a 15 month old.  He is 53% behind.  In the "GROSS MOTOR" category he is equivalent to a 27 month old.  He is 16% behind.  In the "FINE MOTOR" category he is not behind.  Praise the Lord! In the "COGNITIVE" category he is equivalent to a 21 month old.  He is 34% behind. 
To explain these categories better.... adaptive is his self help skills.  Personal-social is how he interacts with himself, peers, and adults.  He scored at 15 months due to him finally playing with his brother. Receptive communication is how he receives and understand words.  Expressive is how he communicates his thoughts and feelings.  Gross motor scored low because he doesn't throw a ball yet, he only drops it, he doesn't jump from the floor, and he doesn't kick very well.  Fine motor scored great.  Cognitive scored low, but not as low as communication and social, which is promising.  IQ is highly correlated with adult success so I am very hopeful.  Cognition has to do with problem solving, attention, memory, understanding concepts like big and small, soft and loud.  He does not understand those yet. 
Certain categories scored higher than he really is due to him being able to do a few random things in the category, such as expressive language.  He can't express anything that he wants expect to be "all done" with sign language.  Everything else is randomly mimicking our words, however the way they did the scoring that counted as him being able to express his feelings.  Also, he scored higher in social because he plays back and forth with his dad and brother, although he won't with anyone else. 
His meeting with the school nurse to begin the special ed process is next Tuesday.  He currently has an ear infection that has gotten worse through the last antibiotic and today he was put on another stronger one that he hasn't ever had.  Please pray that his ear will clear up and that we can have simply 1 month of health for him.  April 3rd is his very first evaluation with the school district.  Their evaluations are much longer and more thorough so I am sure they will be able to determine where he needs to be for his class.  Please be in prayer that he will get the BCBA's class, because I feel it will be the most beneficial to him as does his current therapist.
This Saturday is our garage sale! We have had so many donations and I am hopeful that we will get very close to our goal for genetic testing.  Our goal is $1700.  I am hoping that we can 1/3 of that and I will have some more fundraisers and save until we can get the testing! If you have anything you'd like to donate please email me, or if you'd like to come check out the sale please come by! Jordan and her friends will be selling either snow cones or donuts to earn $ as well.  Thank you to everyone who donated.  It really means the world to us!

Wednesday, March 13, 2013


Behaviors, behaviors, behaviors....That's the W O R D in the autism world. What is behavior?  Its any observable or measurable act by an individual.  It the response to some stimuli.  I am in grad school right now to become a Board Certified Behavior Analyst and everything we learn is about behavior and the antecedents and the consequences.  Up until now, it has all made sense because I am simply learning about behaviors from a book or clinicals that I am reviewing online.  Jacob hasn't had many behaviors that need changing so far.  We have just primarily been focusing on his adapting new skills and working on communication. 

Recently, however, Jacob has started engaging in some seriously distracting behaviors.  He is obsessed with opening and closing doors and drawers.  Wait...before you say "My child used to do that, or I know a child that does that".... This is not like the typical child who sees an open door and really wants to close it.  He will run from door to door in the house in a frenzy opening and closing the doors, making noises and very upset and then open and close the drawers and then run back to the door and open and close it and then back again.  This will go on for up to an hour, back and forth with no easing up.  If you try to stop him he will scream and contort his body all around in a panic.  If someone is looking in the fridge he pushes the fridge door so hard it hurts and if you don't let him close it he gets very very upset.  In fact, we were at a birthday party the other day at my sister's house in which the kids were coming in and out of the house and he was so obsessed with the door and eventually got so upset we had to leave.  He is also doing this during therapy time.  Additionally, he has started squealing during therapy when Mindy is instructing him so he doesn't have to listen to her. 

So what have I learned about changing these behaviors?  Not much yet.  I know that redirecting and giving different options works best.  Sometimes a parents instinct is to discipline, but when they are seeking to meet a particular need and you just discipline, it doesn't give them the option to fill that need in a more appropriate way.  That's about it.  We have studied behavior, how to define it operationally, and how to graph and document it, but not how to change it yet.  So I asked Mindy.  She said that I need to get those baby doorknob covers on the doors that lead to outside and the upstairs doors.  This will allow me to monitor just the downstairs inside doors to help him.  She said when he is in his highchair I need to open cabinets to let him see them and not let him close them.  I also need to redirect him when he is opening and shutting all the doors.  She said I can't allow him to do it.  Here in lies the problem.  He physically won't let me hold him long enough to keep him from closing and opening the doors.  He just moves in all sorts of crazy ways crying until I let him down and then he goes right back to it, or he acts like he doesn't care so I let him down and then he runs and closes it.  HAHA I have no idea what to do about the squealing during therapy either.  Jacob seems to be getting a bit more aggressive and irritable.  We haven't changed his diet or anything, he is just starting to act out a lot more.  Obviously, it could be that he is getting older.  It just appears that he is having a harder time, though, as well. 

This weekend our family will be on a mission trip with our church.  I wanted to ask for prayer.  Particularly for the mission trip and that it would be a success and God would be glorified.  Secondly, we will be staying in a hotel which will be very hard on Jacob.  He usually can't sleep much for than a few hours when other people are in a room with him.  Also, blitzing and BBC will be hard on him.  When there are a lot of people around that he isn't used to he usually has meltdowns or starts engaging in his repetitive or self stimming behaviors.  However, I didn't want to let this hold our family back from doing what we know God is calling us to do and neither does my husband.  I just would love prayer for our family and that a peace that only God could give Jacob would fill him up.  Please also pray that we can figure out some of these behaviors and get them under control in the future.  I realize this isn't as serious as some of you have to deal with, but for us, challenging behaviors are only just beginning.  I will also be in prayer for those of you with children that engage in behaviors that are hard on them and the family.  I also have heard many people are really struggling with insurance nightmares right now and do not know what to do or where to turn.  God is in control.  I will be praying for peace and understand and guidance for you.

Thursday, March 7, 2013

Why Genetic Testing???

We have had a major breakthrough in therapy recently.  Jacob has been mimicking sounds of words for a while.  He doesn't use functional speech (asking for things or requesting or calling us by name) but he can mimic our words.  In therapy, Mindy has been reading him a color book every day.  Well, the little cutie memorized the color book with the "the end" and all and we get to have him read to us each day.  Talk about an amazing blessing!!! Also, Jacob has mastered the "all done" sign in sign language and uses it regularly when he is done eating or ready to get up from his work table.  This is such a tremendous blessing because he is communicating his feelings with us....FINALLY.  It only goes up from here. I can't wait to see how much he progresses within the next few months.  Hopefully, he will develop functional speech soon. Here is the video of Jacob reading his book with his Daddy.
Recently, my mom took a new job at Dallas Children's Hospital and found out that if we get genetic testing there, we can get about a 70% discount for not having insurance coverage and paying up front.  We kind of thought genetic testing was a unreachable goal until now.  This means that the $6000 testing can now be around $1700.  Still sounds like a lot of money, right?  Even with that discount Cret still wondered if we should get it.  What are the benefits of genetic testing?  I asked that very questions to Jacob's pediatrician, neurologist, and a friend who is a geneticist (and an autism mom).  Their answers varied, but I wanted to give some insight to those who have asked me what good the genetics testing will do.  I am not an expert on genetics and know very little, but here are some of the answers I received.
Benefits of genetic testing:
1.  There are certain genetic mutations that can cause autism, these will be detected in testing
2.  There are certain genetic diseases or health issues that can be detected that may cause significant health problems in the future (as the child ages they may need to be on ventilators, etc) and you can plan for these financially and mentally.  Also, there are certain conditions that they know are more permanent, so spending your life savings on intense therapy may not be the appropriate option and saving for their future may be more appropriate
3.  Once you get genetic testing, you are "in the system" for the children's hospitals.  This means that research studies and scientists looking into the specific genetic mutations your child has will now be able to contact you with information or studies relevant to your child.
4.  The neurologist told me that genetic testing is the standard care for a child with autism.  She was baffled that our insurance didn't cover it because it is the most basic testing for kids on the spectrum.  She also told me that if it were her child she would definitely pay out of pocket to get it done because we can have a better understanding of what is going on with Jacob and his body and health.
For all of these reasons I have decided that I would love to get Jacob genetic testing.  I have decided to start saving up for it.  We can't outright pay for it because we would have to cancel Jacob's ABA therapy for about a month and a half, and I don't think it is more important than therapy.  However, it would bring great joy to my heart to get more answers about his health.  There have been some health issues with Jacob that we (myself, my husband, and my mom) have always been curious about.  His digestion is always off, he is extremely small, low muscle tone, always sick...and I am hoping eventually we can get to the bottom of it.  Like his neurologist said, this is just the standard procedure of care for him.  I realize it isn't an emergency to get the testing done, but what mom wouldn't want more answers to a health issue (AUTISM) that raises so many questions?  There is just so much still unknown and I would like to get the very best care for him possible.  I am not in a mega rush to get it done, but have decided to begin saving so that one day we can get him the testing. 
We have decided to begin our savings with a fun little fundraiser.  My sweet friend gave us the idea to collect donations from people for our neighborhood garage sale on March 23rd.  We have already had a few friends donate some pretty amazing things for this sale.  I am so overwhelmed and grateful by people willing to help.  Asking for donations and help isn't really the most fun thing in the world to do, but I am so humbled when people are willing to.  Thank you.  Also, Jordan and Skyler and Kaylee will be selling snow cones at the garage sale to earn money towards his genetic testing and we will hopefully have signage up for the worldwide autism awareness day on April 2nd.  April 2nd is "Light it up blue" for autism day and last year we had signs up, wore blue and had blue light bulbs in our outside lights.  My super sweet sister did that as well.  She is such an amazing gift to my life and our family.  Anyways, its a pretty cool day to raise awareness for people on the spectrum and the much needed research.  If you have a business that would want to participate in the worldwide autism awareness day or you personally want to light it up blue for autism on April 2nd please visit autismspeaks.org for more information. There will be some major businesses in downtown Houston that will be all blue for that day.  It should be pretty cool.