Monday, January 7, 2013

Tourette Syndrome

Wow.  Jacob has come a long way in the past few months.  He is mimicking so much now.  He is motivated by music in a way that baffles me.  No matter what we say to him he will mimic it, however,  he mimics the tune of what we say and not the actual words.  My sister in law jokes and says it sounds like he is talking or singing in Morse code.  Its very cute.  I just think that it is fascinating that he loves music so much.  I find it interesting because virtually all the books I have read on autism state that most autistic kids are enthralled with music and make connections with music and can play instruments or sing perfectly in pitch.  I feel so thankful for his love of music.  I love the little guy.  He is making so much progress in his ABA therapy.

I want to ask for prayers in the coming weeks for our family.  Most importantly, we are taking Jacob to the neurologist for some testing.  He has been having some strange sharp movements with his head and arms that are unusual. They are unlike his usual repetitive behaviors or weird hand movements.  I have sent a video of these movements to several moms of autistic children, a few moms of children with Tourette syndrome, a few therapists, and a pediatrician.  For the most part they say it looks just like stereotypical Tourette Syndrome tics.   I want to have him checked out and make sure there are no seizures involved.  Its a little scary and I would very much appreciate prayer in the matter.  I have read that many children with ASDs also have Tourette's and most have seizure acitivity.  The movements I have observed do not resemble seizures.  The pediatrician who viewed it said in that particular video it looks likes tics and does not look like seizures, but that I need to take him in to get it checked out.    Many people do not know that seizures are extremely common in children with autism.  If you suspect seizure activity you should have your child checked out by a neurologist.  When Jacob was checked out as an infant his brain showed no damage or seizure activity, so I am hoping that is still the case.  I don't know much about Tourette's, but plan on doing some research in the upcoming weeks since it looks like that is the more likely cause of these movements. 

Secondly, tomorrow is the beginning of my 2nd semester in graduate school.  I am having very mixed feelings about this.  My first semester turned out to be such a blessing.  I managed to get a 4.0 GPA!  School did not interfere with my family or church life and that made it so easy to do.  This semester will be quite a bit more challenging.  Obviously I don't plan on it interfering with family or church, but I know I will have zero social life or extra time.  Also, if I am not careful with time management it could end up taking up family time because I am also homeschooling my preschooler and 4th grader.  In one of my classes I have to observe autistic children in a clinical setting under the supervision of a BCBA (board certified behavior analyst) and develop my own assessments and treatment plans, which is great experience and an awesome learning opportunity.   That project is in addition to all my reading, test taking, journal reviewing, etc.   I am needing prayer in order to be able to manage my time in a way that my family and true priorities do not suffer at all from being in school.  After reading my class objectives I am sure that this semester will be the hardest I have ever had. I am confident that this is the right decision for my family, though.  We have prayed about it and know that this education will allow me to understand how to help my son and other moms with children with ASDs.  Since there are only 4500 BCBA's in the world, the need is very great.  Many countries do not have any BCBA's at all and would greatly benefit from seminars on behavior.  Autism is a rising problem all over the world.  I will have the credentials and experience to speak to groups of people about developing treatment plans for their children.  I want to have the education to be able to go and teach people how to help their kids learn and how to modify behavior and teach them and most importantly tell them about the hope they can find in Jesus Christ.   I want to tell parents about the peace that I have from the Lord and that they can have that, too.  I want them to know that the Lord is who gets me through each and every day with hope and joy regardless of Jacobs successes or failures.  That hope is not in my education or in my circumstances.  I want to tell people that if Jesus is the center of their life, their marriage, and their parenting that they WILL be happy and successful.  Success will have a different meaning. So, I am just asking for prayer in all of these areas. 

The last thing I wanted to post was a question to those moms of autistic children.  When do you start potty training?  It is obvious to me that I can not start now, even though he is 2 1/2, because Jacob is tiny and could not even get on to the potty.  He also would play in the potty water or try to get into the water if I let him get close to it and can not tell me when he has to go to the bathroom.  LOL I guess we are nowhere near potty training time.  I am just wondering when people start?  I would love feedback in a post or emails regarding this.  I have a few friends still struggling with potty training at 6 and 7 years old.  Is this typical?  Maybe I should start with a toddler potty that has no water in it?  I don't want to totally stress him out if it seems too early.  I just want to know when people normally decide to begin. Thank you in advance for any advise.



2 comments:

  1. Praying for strength for you and your family. We are trying to potty train our 3 (almost 4) year old right now and we even have it in his IEP for his Autism preschool to offer him a few potty breaks at school too. Right now, we are just taking it one day at a time, really. Its REALLY refreshing to read a blog of a parent with an ASD child who is a Christian!!! Keep at it! Btw...I sent you an email awhile back, I hope you got it! Come check us out at www.facebook.com/MicahBoyGenius or http://micahboygenius.blogspot.com/

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  2. My fraternal twin boys are both autistic. They just turned five and are about to start kindergarten and I'm having high anxiety! Being non-verbal I'm terrified of what they may not be able to tell me. They have both been in various therapies since the age of one and a half and we have seen vast improvements. They are our little jewels and despite the difficulties they are an honor to know, love and raise. You sound like a loving and kind mother so I know you understand what I'm saying. Stay strong and everything will work out beautifully in the end. I'm sure of it.

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