Diagnosis: Tourette's

Once again, my little family has been dealt a blow.  Again, I am trying to keep things in perspective.  The news we received was not "that bad", but it isn't "that great" either.

My amazing oldest son has been diagnosed with Tourette's.  Now before you go running for the hills and pulling your children away from him when you see him because you are afraid he will be shouting obscenities, he does not have the form of Tourette's that causes obscenity outbursts.  That form of Tourette's is actually a very small percentage.  It just seems to get the most headlines.  I mean what is more appealing?  To talk about a person with Tourettes that has uncontrollable obscenity laced outbursts, or the one where the person has uncontrollable facial ticks?  Obscenities are more "glamorous", so it's how the disorder is known.

Once again, it's a spectrum disorder, and there is no magic pill to cure it.  Griffin and the rest of us will have to learn coping and managing skills.  It seems that the ticks are more apparent when he is stressed out. I noticed he was ticking during the weeks leading up to the MCAS testing.  At that point, I was not sure what was going on, just that something didn't seem right.  I finally got an appointment with the psychiatrist and he was diagnosed with Tourette's.  I know he is capable of overcoming the obstacles that this will present.  I just wish that he didn't have to. Isn't it enough that he has Aspergers?  Now he has to deal with this on top of it.

I know it's not the end of the world.  He doesn't have a terminal illness.  It is just another thing that he will struggle with his entire life.  It is just another thing that makes him different from everyone else.  As he gets older and becomes more aware of the people around him, he will begin to notice.  He already knows that he doesn't always fit in.

I am sure Griffin is destined to do great things with his life.  I, as his mother wish that I could take away any pain and heartache he will encounter because of his conditions.   He is such a smart, sweet, funny, loving boy. I say that not because he is my child, but because he is.

I can only try to do my best to help him. I am not always good at it, I admit I feel like a failure sometimes when it comes to him.  My fuse is sometimes too short to deal with him, I sometimes lock myself in my room and have a pity party.  A why me...  but I guess that's selfish.  I am not the one that has to live in his body.  I am not the one fighting the inner demons.  I am not the one that has issues with impulse control.  The one that would get in trouble for not being able to control himself or his outburst in school. The one that was labeled a discipline problem, when he was doing things that are truly beyond his control.  He can sometimes manage the behavior but he can never quiet it completely.

So we will deal with this set back.  We will work on ways to cope and manage the condition.

I am glad that I  have a good support system.  I am thankful to the school for being right there, willing and able to help him manage his condition.  I am glad that I do not carry the "not my child" attitude.  I know something was not right.  I listened to what the teachers were telling me, even when they couldn't formally say things.  I credit Griffin's preschool teacher with being the first person to let me know that something was different.  It was Griffin's inability to interact with other kids, his inability to make friends, the stress that came with trying to transition to other activities, the tailspin he would set himself in when he didn't know what he was supposed to do next.  She met with me and put things in place to help him.  She taught him how to go up to other kids, to interact with them.  She put processes in place to help him learn to transition to other activities. She worked with him to come up with a plan so he would know what to expect next.  I am forever grateful to her.  She spent 2 hours 2 days a week with him, and she knew something wasn't quite right.  I first chalked it up to him being an only child.  Yes, he was around other kids, and he could be social, but he didn't know how to approach other kids.  The kids he came into contact with were what I call forced friends.  They were the kids of my friends.  I took out the hard part.  I brought the kids to him.  I look at him today, and at 11 he can make friends (which is hard for kids with Aspergers), he can be social (albeit, he is a bit socially awkward and always will be).  I see all that he has overcome so far in his 11 years, and I am amazed by his resilience.  I am proud to be his Mom.  I am often frustrated by him, but I am so proud of him.

If I could offer a bit of advice to any parent, it's listen to your instincts.  If you think something isn't quite right, then it is possible that it's not.  Listen to what the teachers are telling you.  They are not always allowed to come right out and say something, but in the way they ask questions, or the little things they tell you that make you go hmm...   I know that several of Griffin's teachers were telling me things that I did not immediately get.  I know they couldn't tell me straight out, but I put the pieces together finally.  And I look back to the way they approached me, the way they asked me questions.  I have to say that Braeden has benefited from what I have learned going through things with Griffin.  I noticed something seemed off with his behavior.  I brought it up to the teachers and they watched for it.  First chalking it up to his age, his gender, etc, but then realizing that there was more to the puzzle.  So now he is getting help for things.

So start the conversation.  If you have concerns about your child, talk to their teachers. They are the ones that are around your kids the most.  They spend a good chunk of time with them.  They see other kids and can draw a comparison.  They are an amazing resource.  And I feel forever grateful to the great teachers that Griffin had.  He did have a couple of not so great teachers, that chose not to believe or help him.  But to draw a positive from them, he learned that he had to deal with people that weren't always going to help him.  They have helped him learn some skills that will be invaluable to him in life.  So for that I thank them.

I know this is just a minor setback, and together we will make it over the hurdle.  Life keeps throwing us curve balls, but it's our ability to deal with them that makes us who we are.

Taking a step back...

I started writing a post a week or so ago.  It was pretty much a pity party for me.  My second son had been diagnosed with Sensory Processing Disorder.  Most kids have one of the two forms of it, either external stimuli or internal stimuli.  My sweet son has both.  In a nutshell this means that he gets overwhelmed with external stimuli AND internal stimuli.  Someone that has external stimuli issues, can calm themselves through internal means, and vice versa.  My sweet baby has both.  This means, that he gets overstimulated from both.  So he gets it coming and going.  Life will be a challenge for him.  There is no cure for this, no magic pill, nothing.  It's a spectrum disorder, so severity levels are on an individual basis.  He will learn coping mechanisms.  Life will not be easy.  One minute he can be completely happy and then with the snap of a finger, meltdown central.  Fortunately, it has been caught early and is being addressed early.

Here is where the pity party comes in.  I spent a lot of time thinking why me?  Why do I now have TWO kids with special needs.  UGH.   Then I thought that somehow I caused this.  That is was my fault that the kids have issues, and they will struggle their entire life.  Because of ME.  No one knows the effects of the fertility drugs I took.  No one can clearly and confidently say it is or is not the cause of the ills that affect my children.  The same drugs I had to take to have my kids, might have caused them problems.

I then realized that I need to take a step back.  I need to stop with the pity party.  I need to take the focus off of myself and how hard this is for me, a single mom to 3 kids, 2 of which have special needs.  I need to look at it from another perspective.  My kids.  They are the ones that will struggle their entire lives.  They will be the ones that have to fight.  I have been told that they are just wired wrong.  They are the square pegs trying to fit in to the round hole.  They are the ones that will constantly struggle with trying to be "normal".  They will fight their entire lives with people that just don't understand them, people that will think they are just acting up. It's not like they can wear a sign that says they have special needs.  That tells people that some things just trigger a bad reaction.  That after they are tired or have been at something too long, they are more prone to act out.  That their reactions to stress are 10x more than your own.  That things you think are "no big deal", can send them in to a tail spin.  Their behaviors are sometimes uncontrollable.  They are fighting with an inner demon.  One they can only hope to quiet, but can never quite conquer.  Many times their inner battles is misconstrued as behavioral.  They are often told they have to control it, and sometimes they cannot.

But at least they are healthy.  And that is something I have to take comfort in.  We can control through therapies and special "Sensory diets".  They are healthy.

I realized in reading about some friends who have kids that are battling cancer, that my problems are nothing compared to theirs.  What gives me the right to complain or feel bad about my situation, when their kids are battling for their lives?

I know it's all about perspectives.  We take things for granted.  It goes down to the concept of know your audience.  I can sit here and feel sorry for myself for having two kids with special needs, but if I say this to the mother who has a child that is battling cancer, my problems pale in comparison to hers.  I am sure she would give anything to be in my shoes.   I can complain that I am broke, my house is on the verge of foreclosure, but if I say this to the person that has just lost their house, living in a shelter or their car, then I am sure they would give anything to be in my position.  Because yes, I am broke, and yes my house is thisclose to being foreclosed upon, but I am fortunate enough to have had a 401k that I could cash in, in an attempt to save it.  So am I broke, yes, in one respect, but I am not completely flat out.

I have been told that I have a negative attitude.  By many people.  And I fully admit.  I sometimes have a hard time seeing the glass as half full, heck, truth be told, I sometimes even have a hard time of seeing the glass as half empty, because that is even too optimistic.  I see the glass as shattered.  Beyond repair.

I don't give myself enough credit. I know this.  This is something I am trying to work on.  I have been in therapy for a few years now.  I am getting better, and I will continue to get better at this. It is hard.  It's easy to go to the negative.  It's a place I lived for so long.  It's my security blanket.  I go to this place because I know it.  I am familiar with it.  I can hide behind it.  If I start trying to stay positive, well that's kind of uncharted territory for me.  It's scary for me.  I know it sounds silly, but I lived my entire life this way.  I need to cut myself some slack too.  I fully admit, I am very hard on myself.  I have heard this numerous times and in numerous situations.  I am my own worst enemy.

I need to look at the positives:  we are a relatively healthy, happy family unit.  My kids have many people in their lives that love them.  I have many friends and family that love me.  I have a great job, I am trying to provide best I can for myself and my family.  I have been commended for how I handled my separation and divorce.  How I can have a great relationship with my ex and his new wife.  That I have managed to shield the kids from a lot of negatives regarding divorce.  I  have shown my kids that just because their parents are no longer together, we still love them very much.  And our divorce was no way a reflection on them.  We divorced to be better parents for them.  It sounds funny that we separated so that we could each be happy.  Happy parents make happy kids.  It makes me feel good when I hear from people that they hope to be able to handle their divorce with the same style and grace that I handled mine.  That I have been looked upon as a role model to them.  It makes me feel good.  To know that through an extremely tough time, I was able to stand tall, with my head held high.

And through it all, through the stress of possibly losing my house, and having to cash out a 401k that I worked for a good chunk of my life to have, I can see that once I get the house situation righted, I might have a little bit left to pay off one or maybe two of the credit cards, freeing up some money to save.

So there is a silver lining to this, there is a light at the end of the tunnel.

And I am strong.

And I do need to remind myself of these things.  I am truly blessed and truly fortunate.