Monday, April 9, 2012

You might not know this...

I think for the most part, I'm a pretty open book, except when it comes to my feelings about having a child with special needs.  I hide a lot of emotion related to this aspect of my life, and since this is my place to vent and work through my feelings, it's a perfect place to compile a small list of how I'm feeling without actually having to speak. 

1.  I'm scared--I have no idea what Nate's future will be like.  I do know that he is healthy and will live a long life.  What I don't know is what that life will be like.  Will he ever have a girlfriend?  Will he be able to drive a car, or will I have to take him everywhere?  Will Nate ever be able to hold a job?  Will he have to live with me and Matt for the rest of our lives?  There are so many uncertainties that come with a child who has special needs.  Many of the parents I know who have children with special needs have these same fears/concerns, while others are confident that their child will grow to live a normal adult life.  

I'm scared that as he gets older, he will get picked on due to his disability, the odd noises that he makes, and because he's not able to form words correctly.  Kids are assholes to each other, and I am terrified that they will be horrible to Nate.  

2.  I'm jealous--As I have written in a previous post, I am jealous.  I hate feeling jealous, but I can't help it.  I see all these wonderful pictures of families who look so happy.  They all have smiles on their faces, kids who are actually looking at the camera.  Kids who are actually posing for pictures and doing silly things for the camera.  Then, I see my family pictures where we are basically holding Nate down in order to take some type of decent family picture.  He's usually looking off in a different direction or trying to escape.  

I want to do things that typical families do.  I want to be able to go to the store with both of my kids without having to worry about which emergency exit Nate is going to make a beeline towards, or if he will run off in the parking lot.  I want to take him to the Natural History Museum, to a restaurant for dinner, to activities that the school puts of for students.  I'd love to take him to the fair, apple picking, on a hayride, or even have him go fishing with Matt.  I think that he would have fun if he just understood how to act in public.  

It hurts my heart to see Nate struggle so much to learn things that come so naturally to other children.

3.  I HATE kids birthday parties--I hate them mostly because of the above (jealousy).  I see kids who are having so much fun celebrating their special day.  They have their friends with them, are laughing and smiling.  They look forward to opening presents, eating cake and doing fun things with their friends.  We don't get to do that.  Nate has no idea what his birthday is or how exciting it is to look forward to presents and friends.  He loves cake, but that's about it.  I'm a party planner, and love putting thought and creativity into birthday parties.  I feel like I don't get to do that with Nathan.  When we attend parties for his friends, it's almost like he's not even there.  He will sit and eat a piece of cake, but isn't interested in any other aspect of a birthday party. 

4.  I love to talk about my son/I don't love to talk about my son--I like to talk about the progress Nathan is making at school, but a lot of the time it just makes me feel worse because I know that he should be doing so much more.  When people ask me how things are going with Nate, I typically say "Things are great!"  What I really want to say is- "things totally suck, and are really hard for us."   Boy, what a buzz kill that would be.  Statements like that make for quite an awkward conversation.  

5.  I am exhausted--Not only do I not sleep well due to my fibromyalgia, I don't sleep well because I have so much on my mind in regards to Nathan.  I'm always thinking about his speech problems.  His IEP goals, speech services, and therapies are always in the back of my mind.  I lay awake some nights thinking about how we are going to pay for his speech therapy because it isn't covered by insurance.  I'm physically tired from chasing Nate around all day.  I am mentally tired from being stressed about the future.  I am emotionally drained from the peaks and troughs that go along with raising a child with special needs.  In the event that I get a day or two away from the kids, there is always a lingering layer of fatigue that follows me around.

Raising a special needs child has made me think differently about a lot of things in life.  I am am less likely to get annoyed or judge out of control kids because I don't know their whole story.  I have become more sensitive to generalizations and inappropriate slang (like the words 'retarded', 'short bus').   I have learned to become more patient with my kids and others, because we all have our shortcomings.  Mostly, I have realized that with all the uncertainties and challenges that come with raising Nathan, I wouldn't trade him for anything.

1 comment:

  1. Adrianne, I'm so glad you could share all of these feelings here. I think even if people can't fully relate, they understand why you would feel each and every one of those feelings. We all know how much you love Nathan and that you and Matt would do absolutely anything to give him every opportunity in the world. I hope you keep sharing!