Being a grandparent to a 15-year-old with Tourette Syndrome is a learning process

I am writing this post because I didn’t want to feel alone in my situation.

Being a grandparent to a young boy of fifteen with Tourette Syndrome is a learning process. He has come to live with my husband and I on a month-to-month basis. His home life with his parents is very stressful now, and I don’t know if it will change. I am concerned  for his future, I am home schooling him now. He is having a lot of difficulty with staying on task and passing tests. He also has ADHD. The medicine he takes does not get rid of his tics. The school that he had been attending tested him to see at what level his capabilities were and he is as low as you can score before being recognized as being disabled. He is between a rock and a hard place, he struggles so hard with school work, but doesn’t qualify for help academically.

I want to find out more about how his condition will effect his ability to have a happy and productive life. It was my understanding that children in his situation will need micromanagement their whole lives. If anyone can talk to me about this, I would really appreciate it.

Need advice: Coprolalia negatively affecting my son

Here is a post from a mother who wishes to remain anonymous. She could really use help, though, so please consider commenting with a reply if you are reading this. Thank you!

I’ve asked questions before, and it always helps to get input from others who have been there, done that. My son is 13 and has Tourette’s. He has coprolalia as well. Unfortunately, when he gets very excited — either very happy or very mad — the words fly.

He has certain phrases that he says over and over again. It’s really really hard to listen to on a daily basis, and much of it I have tuned out. He is homeschooled, but the problem is with friends. He only has one friend in the neighborhood — most of the other friends have gone by the wayside over the years.

My son is much younger emotionally, and his best friend is only 8 years old. Today his mom told me that he can no longer have his son play with mine because of the horrifying thing my son said within earshot of her daughter (who is very sensitive and doesn’t get it).

The mom “gets it,” but she is afraid that her ex-husband will hear about what was said (from the daughter) and take her back to court for custody because she is letting her children be around someone who is saying things that could be seen as threatening.

I don’t want to say exactly what was said — it wasn’t good — but it’s a phrase that is in my son’s repertoire. We have tried word substitution, but it hasn’t worked. I have tried explaining why it isn’t a good idea to say certain phrases, to no avail. Has anyone tried any form of behavior modification that has worked for the worst of the language?

I guess I’m worried as he is getting older that what if someone, such as a police officer, hears him say something that they consider threatening … even though he has Tourette’s, can they arrest him? What happens in those cases? He is currently unmedicated as nothing has worked so far to make the tics any better.

Thanks for any advice

Running the marathon

If there’s one thing I’ve discovered about my kid is that he can be a bit of a manipulator it’s important to stop and really talk to him. This means when he is complaining about school, or crying about some kids on the yard, I can’t just take it at face value. It’s time to really pay attention and dig deeply. One friend in particular encouraged me to really hear my son out — to tell him that we were on his team and would support and protect him no matter what.

And so, that’s exactly what I have been doing. I have been going out of my way, as has Rex, to sit and talk with him about the dynamics of class and the playground. Of course I would take him out of school in a second if I thought major damage was being done. But sometimes kids are awful. This does not mean we need to vacate. It means Stink needs to use his voice to change the situation the best he can, and what he can’t change, we deal with then.

In navigating the past month’s ups and downs, it has meant really talking to Stink, but staying detached and focusing objectively on the situation. Given this kid was literally attached to me for nine months, then spent the better part of the last decade tethered to me like emotional velcro, the task of staying centered is not an easy one.

But, having been at this parenting thing for a while, it’s exactly what I put into practice. Turns out, the play yard situation has indeed improved — something that wouldn’t have happened had I yanked him out of public school at the first sign of trouble. Together, with my husband, we spoke to his teacher about his lack of joy for school. She set us at ease that part of this is fifth grade hormones and academic pressures. But a big part of it, we found out, was that Stink feels there’s no fun.

Read on for the entire riveting conversation! Continue reading

A rocky start to school

My kid did not like the beginning of fifth grade. To start with, his best friend moved to San Diego. For seconds, his other two buds are in the other class. For thirds, as part of a “responsive classroom” technique, all kids were put in groups of four or five and told to go to lunch and recess together.

I’m certain this was done as a way to eliminate cliques and get clashing groups of kids working together in an Odd Couple meets Kum Ba Yah Seratonin Rainbow Connection sort of theory, but it wasn’t flying with Stinker. Sadly, he was put with a few kids who weren’t exactly in his fan club last year. (Those issues were resolved, but some hurts remained.)

After talking briefly to his teacher, I decided to write a letter to the principal. For five years I’ve played “Nice Mama” while I befriended every mean kids’ mama in an attempt to have all parties learn: One to show grace, one to show flexibility, all to show forgiveness and kindness and all that Good Samaritan crap.

This year, I didn’t have it in me. My husband was undergoing major work stuff, it has been hotter than hell, the pressure is up to finish my book and I was worried about my upcoming Baptism where I would be forced to make my “declaration” as well as go into full-body submersion for Christ. Or, as my best friend’s husband likes to put it, “Go into the Dunk Tank for the world’s holiest wet tee-shirt contest.”

I caught the eye of the principal the third day of school, a kind man we’ll call Jay who has more fashion sense than Nate Berkus and a bigger heart than Oprah. He gave me the “I’ll set up something tomorrow” walk by confirmation. “My son wants to be homeschooled,” I interrupted him. “Meet me in the office in 20.”

And so I did — with my son, who was not so happy to be sitting in the Principal’s pad on the third day of school. Picture a lovely gray wall, fabulous table with slip covers, Jay in a fabulous purple checked Oxford and my son — slumped with his Mario shirt and size 9 feet tapping the floor: Continue reading

Help! We need to relocate to Denver for our Tourette son

CoreyCorey has Tourette Syndrome Plus. The plus means he has co-morbid disorders accompanying the TS. He has OCD, Sensory Processing Disorder, ADHD, ODD, anxiety and mood disorder w/ bipolar features. His former school could not facilitate his needs, causing him to be discharged from school. This means mommy can’t work and has to homeschool.

Corey is a very loving, caring and charismatic young man who would do anything for anyone. The family wishes to relocate to Denver, Colorado, so that Corey will have access to better health-care professionals, as well as special schools which are specifically designed for special needs children.

It would mean so much to him to get to go back to school and make friends again! Please help us give Corey a better chance at a normal life! We would also like to get Corey a service dog! You can help us out by clicking here.

If you’re wondering about the picture, this was Corey about a year ago when he was being prepped for surgery to reconstruct what was left of the tip of his thumb. A sensory-type tic which causes him to rub the tip of his thumb along surfaces which he finds pleasurable or which appear as though they may cause a pleasurable response took hold of him while he was in my dad’s shop.

I was at work and he was sick so my dad was sitting and felt sorry for him being bored in the house with grandma, so he broke his own rule and allowed a child in the shop. He had just finished working on a bench grinder, cut the power and put the guards up and turned his back to grab something.

Unfortunately, the grinder was still powering down, and Corey just had to know what it felt like. It grabbed his thumb and literally ground the tip bone and nail bed off, down to just above his knuckle. He still has enough of his thumb to allow full function, thankfully, but was so traumatized that he will now not go within 10 feet of the shop door.

To read more of our story, visit my Tic Tic Boom page on Facebook.

Another story of a special needs child being grossly mistreated

As the mother of a special needs child, I find the story about an 8-year-old special needs child being handcuffed and thrown in jail for throwing a tantrum very unacceptable. The child needed psychiatric intervention in the case where a parent or alternative solution was unavailable.

Special needs cases are delicate and unpredictable, at best. My child was removed from school for a similar reason, the school’s solution being to provide him with 6 or less hours of private instruction per week, 2 days a week. I don’t see the rages the school describes in my child at home, so sending him to a tutoring program at the one place the teachers have caused him to come to hate made no sense to me at all.

Instead, I decided to home school. Inevitably, as many of you warned me, a DYFS investigation was launched, fueled by the school’s upset over losing funding from a special needs child. As per protocol, knowing my rights, I have delayed the investigation until it fits into my schedule (know your rights, you don’t have to allow these people into your home, no matter how much they insist, and they can only demand entrance if there is a probable cause to believe imminent danger to the child/children and they have a police escort with a warrant).

This will all be included in my next blog,  which I will write as soon as I do allow the investigation to be completed — probably today. My personal opinion on this, this child needs to be removed from the school and put in an alternative school or in a home-school setting and needs psychiatric intervention, as her current school, much like the one my child attended, is obviously ill-equipped to facilitate her particular needs.

If the school can’t provide a safe environment, and the child has a meltdown, rage, or reaction to a disorder, the child needs to be placed in an environment which will enable her to thrive. I pray there is a support group ready to attend to this child and her family’s needs.

Read more from me on my Tic Tic Boom page on Facebook.

How can an IEP request be turned down when it’s obvious?!

We’ve had a rocky start to the homeschooling process. Corey was down with the sickness for a couple of days, then it took me out completely (thanks Methotrexate, lovely medication right there! NOT!!!). Now, I’m looking at this, all compared with the grades he got all school year at the public school — horrible institution, ask for an IEP and despite him having a prior diagnosis of ADHD, he was denied, despite his troubles, because they wanted the official TS diagnosis before they would initiate one — and I’m thinking Corey needs to restart 3rd grade from the beginning and work though it all summer to catch up.

I cannot for the life of me understand how an IEP request was turned down for him the first few times I asked when, by law with the ADHD diagnosis alone it should have been awarded. He’s so smart, but I feel like he’s fallen behind because he was denied the help he was entitled to from the start.

I’m thinking of contacting a lawyer on this. But would it do any good? I was talking to another mother who is familiar with the district today and was told I’m not the first to pull a child because of the school’s inability to facilitate a child’s needs. Maybe the district is due for an investigation? Perhaps some calls need to be made. Apparently no one else has the guts, so I guess it’s up to me.

Read more from me on my Tic Tic Boom page on Facebook.

Some links and some hard times at school

Hi everyone, I wanted to post a couple of links that I found online and also put on my Tic Tic Boom page on Facebook. I think you’ll find them very useful. Enjoy!

Praising Children for Their Personal Qualities May Backfire

Sleep Reinforces Learning

An Overview of Tics and Tourette Syndrome

On another note, my son had a major meltdown at school yesterday. Corey is being placed on home-based schooling until I can get the stuff I need to homeschool him myself. School is not a safe place for him right now. I knew it would come to this eventually, but I wanted to have everything set up to just pull him out. Feeling really lost right now.

I want to cry, but not in front of him. He won’t talk about it and I don’t know how. I just can’t picture him screaming and cussing at his teachers and throwing stuff around. Not this little boy who is hiding under a blanket on the couch because he thinks he’s in trouble. I just don’t get it.

Homeschooling by default

Ah, rejection – our constant companion over the years.

Several weeks ago, I posted about our decision to homeschool.  As I wrote at the time, it has been a challenging path, even if, overall, it has been the “least-worst” option.  Well, it has been the least-worst option for O, but I am not sure that it has been the least-worst option for me.

Homeschooling O has taken a real toll on my mental and physical health.  As a result, on several occasions I have tried to place O in public or private schools, never with positive outcomes.  This has been very frustrating, especially when it has seemed that my choice has been to put the boy in school or put myself in the hospital.

We first tried to put O, who is profoundly gifted, into a private school for gifted children.  The school’s curriculum was good but far from enough to meet O’s needs without drastic modifications.  I asked for those modifications, and was told “Well, Mrs. G., you do realize that all of our students are gifted, don’t you??” Continue reading

Forging Our Own Path: The decision to homeschool

This is the second of three blogs today from New Jersey mom SarahG. Her first was on worrying less, while her third — to post later this afternoon — will focus on diagnosing Tourette Syndrome.

When my son, O, was 3 years old, our pediatrician advised me to put him in preschool, because “95 percent of children attend preschool,” and if O missed out on the preschool experience, he would forever be at an academic disadvantage.  Naturally, I did not want my son to start school at a disadvantage, so I placed him in the best preschool I could find.

At the time, O’s first tics already were beginning to manifest themselves, although it would be several years until we realized exactly what was happening.  All we knew then, though, was that he was “a real handful.”  Even if he did not learn anything in preschool, there was something to be said for getting that little bit of a break from parenting the human tornado.

Two years and many headaches later, my husband and I removed both of our children from preschool.  As it turned out, O’s teachers had little patience for the challenges he presented and no visible interest in learning why he was the way he was. At first they attributed O’s differences to my lack of parenting skills.  Once my younger son, B, a model student, enrolled in the school, the teachers decided the problem simply was that O was a bad kid.  For O, that meant that his situation went from bad to worse.

When I picked O up each day, he either was in a rage or was sobbing uncontrollably.  He was sent out of the classroom when there were visitors so he would not reflect poorly on the school; when he misbehaved, he was put in the janitor’s closet in the office or confined to a chair and not allowed to move.

Disciplinary policies such as modeling good behavior were suspended for O.  Respect for privacy and confidentiality went out the window, as the teachers publicly mocked O and complained loudly about him to me in front of other parents.  One day, I stopped by the school at lunch to pick up my younger son.

From the other side of the school, I could hear an adult screaming and a child sobbing ; a parent volunteer was unloading her wrath on O for something he did not do.  The school staff defended her actions because O was “so difficult.”  That was our last day of school. Continue reading