New-Will it ever get better?

[tictoc]

Hi,
I have been "lurking" for a long time and decided that it is time for me to join in. My 6.5 yo difficult child son, "Bug," has Tourette Syndrome, ADHD, Obsessive Compulsive Disorder (OCD), and Generalized Anxiety Disorder (GAD). We are also on the watch for signs of bipolar disorder.

Bug just started first grade and is doing fairly well, with the assistance of a 1:1 aide. He is attending "modified days" for now and leaves after lunch and recess. Kindergarten was a complete disaster, with daily outbursts and a big increase in anxiety and tics. We finally seem to be making some progress with medication, and a weekly social skills therapy group over the summer helped a lot.

We are now in our second week of school we have had mostly good days (today was a bad day), but for us the concept of a "good day" is relative, as I'm sure you all understand. Yesterday, Bug had a fabulous day behaviorally, but he also developed a new, painful mouth tic. At bed time he asked me if he could die from his new tic. I doubt this would meet most people's standard for a good day.

So, how do you get to the point where you "accept" your child's situation? I still find it very hard to accept that my son's childhood is already so difficult and that this won't necessarily get better. We have been dealing with behavioral issues since he was two, but have only had a diagnosis for about a year. It is daunting to think that we will be in the same situation next year, and the next, and so on. How do you cope?

Looking forward hearing from you.

----

 

[Babbs]

Welcome - I don't post very often but I lurk (horribly so) and the folks here are incredibly supportive and understand where you're coming from.

You reminded me of a story "Welcome to Holland" by Emily Pearl Kingsley about raising kids with disabilities.

"When you are going to have a baby, its' like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans -- The coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?!"" you say. "What do you mean, HOLLAND? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everybody you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I planned."

The pain of that will never, ever go away, because of the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never been free to enjoy the very special, very lovely things about Holland."



There are days I know that I've felt that Holland is a horrible, disgusting place full of pestilence and disease. But somehow I manage to get myself to step back, take a deep breath and see the glimmers of Rembrandts, windmills, and tulips. I know that I celebrate all the achievements in my son's life because he works so darned that much harder than most kids his age to get there. And I sometimes have to be very joyful over the little achievements (like dinner without a tantrum).

I know that I find all the guidebooks that I can possibly read, that I try to spend time enjoying the sights and not just the pavement on the road of the journey. And that because my son has taken me to Holland sometimes I get to see other sights that most kids don't show their parents - like the beautiful flower growing on the side of the road on the way to the bus stop, the bug crossing the street, the insight into how certain mechanical things work that is above MY head - all the amazing and wonderful things that are part of difficult child's uniqueness. And that despite the dike exploding at times, the loving gentle part of difficult child is the big brother who kisses his unborn little brother goodnight every night without me saying a word because difficult child already loves him.

A friend gave me a copy of the Welcome to Holland story. I have it posted on my fridge, the back of my bedroom door (for when I need to close it and bang my head in frustration) and on my cubical wall at work.

I don't think I've "accepted" my difficult child's "situation." I've accepted that there are medical/neurological reasons for his behavior. I've accepted that I can't parent him like I could parent a typically developing child. I've accepted that most folks who go to Italy won't have a clue as to what those of us in Holland deal with. But I haven't accepted that this is what it will always be like - I'm constantly seeking help and support from groups, I'm constantly seeking out the latest research not only on medication but also behavioral therapies and learning structures. I'm constantly asking questions and questioning difficult child's doctors, therapist, teachers, and school staff about whys, and hows, and whens, and pushing to do more, learn more, and make changes.

I didn't mean to make this as long as it is (I'm a little hyped up from an emotional meeting at work tonight). I guess the short version would be I haven't accepted it nor do I think most of the parents here have - that's how we get our strength to keep fighting and changing our difficult child's lives for the better. Because we believe in change.

 

[Fran]

Tictoc, welcome to our corner of the world where good days are relative. You know from lurking that we all suffer from days of fear for the future of our difficult child's and fear of our ability to survive our difficult child's kids.
It always breaks my heart when a difficult child who is suffering wonders if they will die or if they are better off dead. We know that they are not their disorders but real flesh and blood people who want what most kids want. Unfortunately, their disorders do get in the way.

I used to want a crystal ball to see into the future. If I knew my son would grow up to be a functional, law abiding, independent young man, I wouldn't worry so much. Looking back, it's probably good I couldn't see the road ahead. it was full of pot holes and cliffs. We navigated it with several mistakes and he seems ok but what I accept ok today would have devastated me when difficult child was a child.

Acceptance in my mind, comes in stages and understanding and emotional growth on our part. I'll never accept certain aspects of difficult child's disorders. I accept his limitations but I'll never accept self sabotaging behaviors or unruly behaviors. This is probably not the same as what I could accept at 7-10 or 13 yrs old.

Our job is to parent our child to the best of our ability. It doesn't matter whether a easy child or difficult child. It is our sacred duty to do the best for our kids regardless of their behavior. The goal being that the kids grow to be good, decent, law abiding, functional adults who lived up to their abilities. If they hate us but function- so be it. It's not my job to have them be my friend. If they are, then that's the gravy in my book. It would be wonderful to have some good interactions with our kids. I want them to remember good times and mommy happily enjoying her children. I want them to remember laughter.

Look at your little guy and ask yourself "what does he need?" and go from there. I wanted to worry less on what I needed as a parent and as an adult and more on what they needed to get through the rocky road that is their life.

Hope we can share some of the things that helped us and at the very least offer some support. Welcome.

 

[LittleDudesMom]

tictoc,

The Holland "story" is a good one and one that can help you realize that life rarely comes at us like we expect.

I can tell you that you will learn to find the joy in the small things and pride in the little molments along the way. I've said this before on the board, but I will repeat it again for you. When my difficult child was in his darkess days back in second grade, I was devestated. I just wished for a "normal" boy who ran and laughed and played with his friends. A boy who played sports and fit the picture of a kid on commercials.

I would pick him up in the afternoons and watch the other boys running on the playground and having a great time. Their mothers didn't worry about their raging, about the potential for them to fly off the handle. They didn't worry about the trips to the principal's office and calls home.

But then a day came where he told me, as we were lying in his bed after a story, about something that happened at school that day and he just laughed and laughed. I remember that it hurt my heart because it felt so "normal".

As he began therapy and medications and behavior mod, things began to improve slowly. I took pleasure in the mornings he ran from the car at school and yelled, "Bye mom, love you." I took joy when he jumped over a wave and laughed. That meant more than any sports trophy.

I realized that he had special gifts and a loving spirit when the rough stuff on the outside was pushed aside. I realized that this boy of mine was who he was simply because he was. I trully believed that he has made me a better a parent and a better person. He has made me more patient and more understanding.

I cannot imagine life without this boy of mine. I trully feel that he is a blessing for a reason. I know in my heart, that no matter what the struggle he will face in the future, a coner of the world will be better for him being in it.

You learn to re-evalate your expectations. You learn to take the joy and take the pride in things you never imagined would make a difference.

Get to know who he is in the quiet molments. Establish a bedtime routine where you read together and then turn off the lights, lay down beside him, and talk when he is tired and not anxious. Allow him to find you his soft place to land. You may find a side of your son you never knew was there. I know I did.

Now, at 14, I have hope because I know who he is down to his core. He just needs a nudge to remind him of the potential that resides within.

I'm glad you came out and joined us.

Sharon

 

[Stella]

Babbs I LOVE that story. Thank you for sharing it.

Welcome to the forum tictoc!

 

[lizanne2]

Welcome Tic Toc:

And yes that is a wonderful story. My difficult child's preschool teacher has become my very best friend. She shared with me the Holland story early on----and not shortly before she had to 'expel' my son from the mainstream kindergarten. It is now our common vocabularly. When she sees i hav the look on my face only acquired by being a mom to a difficult child she just asks how the weather is in Holland! She has left little statues of windmills on my door step. I have received tulips for Mothers Day!

And now we all know we have all changed our vocabulary a little. As you aptly explained 'a good day' has a markedly different meaning in my world. And so does the word better. You asked if it gets better. And yes it does get better! But be careful how you define better. I am Very proud of my son and still fearful regarding what the future holds. But yes, I am better for it, my difficult child is better for it,.......

And I will says, many many people and places are better for having known difficult child.

I know I am better for having 'known' everyone here.

So, Hang on to the 'betters' and be good to yourself.

 

[Christy]

Will it ever get better? Yes, some times will be better and sometimes will be worse. You will overcome obstacles but new ones will develop along the way. The "Holland Story" is a great analogy for learning to accept something different than from what we expected in our parenting journey but along with that come the stages of emotional reactions including crisis, shock, denial, grief and acceptance. It takes time to work through these stages. Sometime accepting that our child can't have the same life as a typical child seems like giving up hope but at the same time, it is important to take it slow and avoid as much stress as possible. Don't push too hard. Focus on each small step and celebrate it. Gather as much knowledge as possible along the way so that you can make the best decisions for you child. Mistakes will be made along the way. Join a support group in your area like NAMI. Take advantage of any community services that may be available. Be you child's advocate. You can't make him better but you can make the world a better place for him.

(((hugs)))
Christy

 

[totoro]

Welcome!
Yes, some days you sit and cry after watching the "perfect" kids and the families who have it so easy.
But you do find your own "perfect", there is much "perfect" in our kids.
I have found, with my own BiPolar (BP) and now with both of my girls having issues, that we have what I like to call super powers.

We feel more than "normal" people especially the kids, my girls have emotions that are above and beyond what those "perfect" kids have.

When K is sad she is super sad, when she is angry the same. But she loves, cares and feels all of the wonderful things 100x's more than average as well.

Being around kids like these rubs off on others as well. I have seen on this board brothers, sisters and parents learn to feel more as well.

I wouldn't change much about my kids or myself.
If I could take away the suffering at times maybe, but that might take away their beauty... such a hard choice.

You will learn to accept. Some days are just harder than others.

 

[TerryJ2]

Welcome, TicToc.

I love what Fran said:
but what I accept ok today would have devastated me when difficult child was a child.

It is so true. Looking into the future can be an interesting exercise but generally, you have to take it one day or one week at a time.
Your point of view will change.
Your difficult child will change.
Life changes.
But, he does have issues and he will always have issues. You will have to live with-that and more imporantly, teach him to live with that and work with it and around it.

You don't have to accept it all right now, all at one time. Some days you can accept his tics. Other days you can accept his anxiety. Other days you will find that treatment is successful and you won't have to accept something you thought would be a lifetime issue.

My son is 12 and has come a long way. I often wonder what will happen in 15 yrs. But our lives are so full now, I try to stay content with that and not do that "what if?" mind game. It's hard, I know.

 

[tictoc]

Thanks for all your replies. I should have joined this group earlier. It is nice to 'talk' to people who understand. I sometimes go to a Tourette's Syndrome support group and that is good, too, but it doesn't meet frequently. My husband and I feel isolated sometimes because it is so hard for people to understand why Bug is different. He appears at first glance to be a typical bright, creative little boy and people are shocked when he turns out to be a not-so-typical bright, creative little boy who rages and says scary things. So many people have suggested that we need to set firmer limits or, my favorite, "just tell him to stop it." I truly believe that my son is a wonderful person and that he is trying very hard to control his behavior. He is so loving and funny and the people who work with him one-on-one, like his occupational therapist and his aide, grow to love him.

Today was a fairly good day at school. His aide was absent, so he had a floater aide today (who is quite good), but that kind of threw him off this morning. He had a rocky start, but the day turned out well. And, I am so proud of him because he ate lunch in the cafeteria today for the first time! He usually sits outside with his aide and a friend because the noise and smells in the cafeteria bother him a lot. So, I am going to follow everyone's advice and today husband and I will celebrate this.

 

[Wiped Out]

Welcome! I do love out Babbs put it. Acceptance for me comes in small steps. There are days where I wish for just one "normal" day (especially after a day like today). I sometimes wish that I was taking him to various sporting events instead of various doctors and physicals. I wish he didn't respond so often with so much anger. I wish he would never be violent again.

However, I do get to enjoy things others not living in Holland don't. I have truly learned to appreciate and celebrate the baby steps that difficult child makes. He is blessed with an incredible sense of humor and at times is the most empathetic person I know.

So glad you found, you are definitely not alone any longer.