It's 1:15 am and I can't sleep. Hunny has been out of town this week and won't be home until Friday night. When he's gone, the boys and I have a slumber party, but tonight there is absolutely NO room in the bed for me.
I had some shocking news today. I've written about my sweet Older One and his ADHD/OCD. It's very trying. This year has been brutal. He started in the intermediate school, started out with a difficult teacher, car wreck, my step-father died, the list goes on. Just a tough time for him. A few weeks ago, he started having emotional breakdowns. I couldn't believe how he would fall apart over small, simple things. Like, the teacher accidentally had another student do his job or forgetting to pay lunch money in the morning, but still getting it paid before lunch, inside recess because of the cold. He would get into the car after school and have complete meltdowns. Just, excuse the phrase, vomit his feelings/compulsions allover me. Then the really bad stuff started happening. No matter what I said, or how loudly I said it, he would ask me to repeat myself. Then, it had to be the exact same way/tone I said it the first time. Then, I had to be standing in the same place where I was standing the first time I said it. Then, I had to wait the right amount of seconds between each word I said. If I didn't, he would pretty much crawl out of his skin. The final straw, I couldn't remember how I exactly said a comment and he went into total meltdown in the car. Banging his head on the door, trying to jump out of the car. It was awful. Well, after a trip to the pediatrician and his counselor, we were sent to a new Psychiatrist and Psychologist. This morning, I took him to the specialists in Columbus and after an hour and a half, he was diagnosed. He has Tourette Syndrome. I really, really wanted to cry. My baby has Tourette S. My sweet, sweet boy has Tourette Syndrome. Why? I just wanted to take him and run away with him. Just hold him and never let anybody ever hurt him again. My baby is sick. He's 9 yrs old.
I got myself together and was thankful we finally had a diagnosis. We could call this behavior by name, and we could start treating it. Later this evening, we saw a second doctor for therapy. He had a great session and seemed to be doing well. But then, it reared it's ugly head and was tormenting his mind again. He couldn't let go of a simple statement I made about being home. Something like, "Yay, we're home. Let's go see our puppies!" Within seconds, we were back to crying and hating. He finally screamed, "God, if you're so perfect, why did you make me like this!" In the car was myself, him and Little One. We all sat and cried. I drug everyone in the house and sat and held them tight. Little One slipped behind the couch and started praying. He prayed for his brother. I really could just die. So, I'm trying to pull it together, get things ready for school tomorrow and keep things as normal, light hearted and loving as possible. You know, put on the happy face so no one knows? I know most of us do it.
I have a lot of learning to do. I'll be reading everything I can about this. Somethings I found out so far, it's going to get worse before it gets better. Puberty will exacerbate it. But after finding the right type and dosage of medicine, he may be able to control it. As an adult, it may be completely controlled unless aggravated by extreme stress. My heart is breaking for him. This is my baby and I want him to have a wonderful, joyful life. As parents, we always say, "I just want my kids to be happy." And we mean it. We really, really mean it. That's what we want for our children. Happiness. When he was born, I felt like God himself had handed me an angel. I remember never putting him down. I held him for hours and hours. I played soft, sweet music for him all the time. I still can't hear "Return to Pooh Corner" without tearing up. I wanted to always protect him. The first time he was in a car and I couldn't be in there with him, I felt sick. Who was going to throw themselves in front of him if there was a wreck? The first day I went back to work, I cried harder than I had ever cried. I wanted to be there, protecting him, loving him, taking care of him. Where did those years go? When did he turn into a little boy? I want him back in my arms, always, no where to go, just playing with toys and having a snack while Sesame Street is on. I want that back.
We have a long road ahead of us, but tonight, I'm just watching his sweet, beautiful face as he sleeps.
51 minutes ago


29 comments:
Your post absolutely broke my heart. I am so sorry that your family is going through this. Hopefully over time you will all find the best way to handle it. God bless.
Wow. I am so saddened to hear you are going through this. yes, we all do try to put on a happy face don't we? Hopefully as you become more informed, you will be able to find the best way to help your boy. I will be thinking of you. (((hugs))) and peace.
Your post touched me so much. Somewhat of a relief to have a diagnosis but still so hard. I admire you and your son's determination and strength. Thank you for sharing this with us.Good luck with everything,you and your family are in my thoughts and prayers.
Oh, God. I am so sorry for all you are going through but am also so heartened to know that a kid who clearly has a lot of challenges ahead of him has a strong family that is clearly in his corner. I know your love will get him through. You're all in my thoughts. Sending you a cyber hug.
Oh my, I am soooo sorry to hear the news about your little one! Sending lots of good thoughts your way!
By the time I finished reading this post, the tears were streaming down my face. My heart goes out to you and your son. I know what it's like to want to run away with your little guy so no one and nothing can ever hurt him again. Ultimately having a diagnosis will be a good thing as it will point you in the right direction and allow you to do everything possible for him.
Funny you should mention "Return to Pooh Corner." I used to play that all the time when SB was a baby. I recently dug out the CD to play for the new baby. Somehow the CD found its way into SB's room where he now listens to it every night before bed.
I saw a wonderful video a couple of years ago about Tourette's. They interviewed kids with Tourettes who were approximately your son's age, some a little older. I remember being so impressed by the courage and depth of the kids. I seem to recall it was produced by Polly Draper (she played Ellyn on "thirty-something" and both her husband and son have Tourette's .... apparently she also starred in a recent film about Tourettes called "The Tic Code").
OMG, darling, I'm so sorry your family is going through this...
Your boys are both wonderful and smart and talented... No one is born perfect, and what your Older one is going through is not your fault. He only needs his family to be there for him, to support him and love him. You are a very responsible generous and loving mother, and trust me not everyone is like this...
I had my problems as a kid but my family was not like yours and I had to deal with those problems later in life, which only makes things worse.
Thank god your boy is diagnosed, and I'm sure you'll be able to treat and handle this smoothly.
HUGE HUG!!! Toshi is sending you his wettest kisses, and you and your family is in Nick's and my prayers...
God bless you!
Praying for happy days ahead for your son. Thank god he has parents that are pushing ahead for the best treatment!
I'm sorry you have to deal with this. Hugs to you.
My daughter has a communication disorder, and it's tough, isn't it? You just want to make it all right for them and sometimes we just can't. For me, there are times I feel myself starting to feel sorry for myself but I can't let myself get that way - for her. At the end of the day she is who she is and that's that. You know?
And remember - EVERY kid struggles with SOMETHING. Your kid is lucky enough to have YOU as his strongest advocate and biggest champion. And for what its' worth - I have worked with lots of kids with Tourettes' and with the right medication it is controlled and they are really perfectly fine.
I am so sorry to hear this - I guess knowing what the diagnosis is will help you. I saw an HBO special on children with Tourettes and it was very interesting to see how the children work together to deal with their illness. There was also a man profiled on 60 minutes with tourettes who had brain surgery that all but cured him. My husband worked for the brain navigation system that helped the doctor with the surgery. Have you been able to find a good support group in your area?
((HUG)) Oh I'm so sad to hear all you and your family are going through. I'll be thinking of you as you navigate through this.
Belle,
I don't know you. Honestly, I don't know HOW I came upon your post, except by the Lord's tender hand.
I am so sorry to hear about your son's troubles. Your Mama's heart gapes open and reveals your love for him in you words.
I'm sobbing reading your post, because some of the descriptions you gave of your sweet boy could have described my sweet MaryEvelyn to a "T"; the outbursts over seemingly small things, the inability to control exaggerated emotions, the apparent unravelling at the thought of her "plan" gone astray. We are in the "investigating" stage of this and, although I don't know what our journey will hold, I know that you have to be in a very tender spot right now. As much as I want to KNOW what is tormenting her, I am TERRIFIED of what words we will hear. Still, my heart knows that it must be something though.
I will be praying for you and your family. Thank you for sharing and for the opportunity to not feel like "the only Mom in the world" in this.
God bless you.
My heart goes out to you. I know this is a huge challange but you have so much love to give and that love will pull you through this.
He's a lucky boy to have a mom like you. Hang in there, I'll pray for you.
This is the first time I've visited your blog.
I just wanted to say that I'm so sorry that you and your family are going through such a difficult time.
I hope that things settle for you all quickly.
Sending prayers your way...trust in the Lord...he won't fail you.
My heart is breaking for you. i cannot imagine how you are getting through this. Thank God you're their mother. You will do everything you can and I know things will improve. It is a tough road ahead but there will be great senses of accomplishment along the way. I love that his brother was praying for him. I will pray too.xoxoxoox
You had a very moving post. I loved how you wrote about protectingour children. It is all so true. The life lests we are given can be so brutally difficult. Stay strong for your family and you will and all of them will survive.
Someday I will write about our horrific life lessson...our perfect little angel, Claudia, 13 months old, passed on in her crib one day during a nap...she was perfectly healthy..it was just her time..and we all learned incredible life's lessons during that time.
Hang in there..and I send you my prayers..
My heart and prayers are with you and your family. If it is any consolation, friends of ours had their daughter diagnosed with Tourette's back in 1974. She was around your son's age. Back then people had never heard of it. They got the best treatment for her. She is now married, has children, and has enjoyed her all most normal life. I'm sure the advancments in treatment is far superior now.
Take care of yourself, hugs to all.
I need a kleenex. Your post was so touching and heartfelt. I think we can all feel your pain and your love. I just want to give you a hug. I'm so sorry you have to go through this, but remember "that which does not kill us makes us stronger." Easier said then done, right? =)Lots of prayers your way for you and your boys.
I came here via a trail of blogs....not even sure how, but it must be providential. I have a good friend with two sons who have TS.....and similar behaviors. You could definitely use a support group; she and her husband helped start the TS support group in the Houston area. I'd be glad to share her name with me, if you want to email me. I know she'd be glad to chat with you. God bless you and your family!
Oh that poor kid. You nailed it with dosage. Do the best you can with that and pray that by the time he hits puberty they perfect the meds/surgery all the more.
What a great mom, and what a hard thing for you.
Hugs
I'm here via Lotta's blog. My oldest has Tourette's, ADHD, and OCD. She will be 10 in May. She was diagnosed a year and a half ago but I had a pretty good idea that she had Tourette's several years earlier. I can identify with everything you wrote here. I recently moved to Wordpress so my posts aren't categorized yet but once they are you can read my posts on our struggles. It seems like such a big awful diagnosis at first. In time you and your son will figure out triggers and learn how to manage them. It will be okay and you are not alone.
Not even sure how I ended up here at your blog, but your story...broke my heart.
Sending hugs from a total stranger.
I truly, deeply sympathize. My 9 yo son has issues as well, mostly related to Asperger's Syndrome, and your story sounds sadly familiar. It is so hard. It is painful, unfair, scary and frustrating. All of that. I'm sorry. I would like to offer you a hug from a caring stranger, encouragement, support. And one more thought: When Max has been in his worst patterns of aggression, anger, and irrational thinking, I have taken him to a pediatric acupuncturist. Using only pressure points and massage, he has had the most astonishing results in calming and balancing my son's emotions. I hope you find comfort and solutions.
thank you for all your nice comments on my blog... I am so saddened for your family and this crazy journey your all on. With a diagnosis you have a focous- I will be stopping bye often to check in on you & your family,
If you haven't already, watch "I have Tourrette's but it doesn't have me". Very enlightening for both you and your little man.
I have OCD and i know that if things don't happen exactly as I need them to I get a little crazy. It's frustrating, but know that my family understands makes it better. I'm sure it's the same for your son...or it will be when he's old enough to really understand.
Giant hugs.
I just found your blog via Lotta.
My (almost) 5 year old has severe ADHD. There has been talk about bipolar disorder as well. I know there is more going on with him than just the ADHD.
It is heart breaking as a mom when you can't fix things for your child. I'm so often overwhelmed by his behavior, and struggle to not let it become about me.
Wishing you the best of luck as you navigate this journey.
I was so moved by your post ... just finding your blog and this is the post God led me to! We also have a special needs child who does not have a diagnosis, but has so many issues. It is a day by day process and I will pray God will give you enough strength to get through the day you are living. I too have watched my baby while he sleeps just pretending for those moments that he is fine and ok ... when I never know what the next day will bring. READ, READ, READ it will bring you comfort and strengh in learning all you can do for him and you. And remember ... I am thinking of you and praying for you!!!
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