We just want our son to be happy

When you find out you’re pregnant, you are the best parent you will ever be. Everything you do will be perfect, your child will be well behaved with good manners, an excellent student, an athlete, president of the student council, or join every club you did.

The first time I felt Jacob kick I knew that was my little soccer star. As I planned out his childhood while pregnant, he continued kicking and pushing on me. The first time the doctor put him on my chest, I felt fear like I have never known. How do I keep this baby alive, much less turn him into the soccer star I imagined?!

Today, I got mad at Jacob for repeatedly telling me the same story I told him last week. He always repeats my stories back to me several days or weeks later. I used to think he was searching for validation or something like that. Now I know he just can’t help but do it, no matter how many times I tell him to stop.

I have to remember to breathe, tell him it’s OK, but no, it’s really not a good time to rehash my latest story. I close my eyes and remember the first time I saw him in the delivery room, how perfect he was, and how everything changed for me. Little did I know that he would eventually change me in ways I could never have imagined.

His first year was a blur. He was so busy, always moving, laughing, kicking, wiggling, and entertaining us with his silly ways. He was adorable and sweet but BUSY. He has never been still. He eats well and always has. He was spirited as a toddler. We did the terrible two’s for two years with him. When he was almost 3, we had our second son.

Jacob was loving with him after getting over a bit of jealousy. But it took another year for his behavior to improve. He wouldn’t sit still for story time and hated being read to. He wanted to be up and playing. He wouldn’t stop to color. He slept pretty well but that wasn’t surprising because he was always going when he was awake.

Around the age of 4, I started noticing things — little oddities here and there that I couldn’t put together. There was just something different about him that I couldn’t put my finger on. Continue reading

Finding the right school

kidsWhen Stink was first diagnosed with Tourette Syndrome, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was 5 years younger than me, but acted like a stern 60-year-old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted. Continue reading

A Tourette Syndrome mother’s long journey, part 1

This is part 1 of a 4-part series from a California mom detailing her struggle to get the right care for her Tourette Syndrome son.

Hello, I  am the mother of a 14-year-old son, Spencer, who has Tourette Syndrome. Unfortunately, we had to take a bumpy road  before this diagnosis. I could write a book on our journey so far, and I still don‘t have it figured out.

It has never been easy, including the beginning that started with the worst case of Hyperemesis, Pitocin, 24 hours of labor and hemorrhaging to get him into the world. Nursing was a challenge, he didn’t sleep much, had some ear infections and was sensitive to loud sounds.

He was otherwise very healthy and always in the 95 percent on the height/weight charts.  He walked at 15 months and was running within the end of that month. He had an advanced vocabulary and figured out how to open up the most advanced cabinet locks by his first birthday.

He had an atypical febrile seizure at 14 months old that was severe enough to have him admitted, but thankfully all the tests came back positive. As a toddler, he was very impulsive when it came to playing with other children and it was not long until we were outcasts in play groups. It is then that I started to feel isolated. 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