Wednesday, June 26, 2013

There is always hope

I had to make the urgent trip home because my Grandmother had fallen ill. We had to put her in the nursing home. I have always been close with her, so this process has been really tough. We put her condominium up for sale, we went through some of her belongings, we got her set up in her room and fixed it up the best we could to make her comfortable.

All of this was hard, but the hardest part was looking into her eyes and seeing nothing. There is no light anymore. There is no hope. It is heart wrenching. When did the light leave this vibrant woman? When did she decide she had given up? She has COPD and dementia, so her body is tired and her mind struggles, but there is still hope. There is always hope.

Sometimes I look into Hunter's eyes with his blank stare and I think the same thing. He is tired from always struggling to be like everyone else. He is tired of feeling different. He is tired of everything being so hard,  but there is hope!!

I hope you dance!

After the tough therapy session, I checked my phone, and I had several missed calls from my parents. I soon found out that my Grandmother had fallen ill and was in the hospital. I immediately started making airline reservations. Neither of my boys had ever flown. Hunter was not up for it. He has always said he was too scared to fly.( He also said he was not going to go on a cruise because he was not going to sink like the Titanic, but I got him on a ship for a week.) I was just too exhausted to fight it this time, so Grant and I flew home.

Grant has always wanted to fly. He has asked over and over, so he was excited beyond words. He helped me pack and got a bag together to keep himself occupied. I had not flown since Hunter was in my belly 12 years ago, so I was a little nervous. My adrenaline had kicked in because I knew I needed to get home.

Jeff and Hunter took Grant and I to the airport that evening. As we were pulling into the parking garage, Hunter leaned over to Grant and said, "This is going to be the worst day of your life." Poor Grant looked like he had seen a ghost. As we were walking into the airport, Grant leaned over to me and quietly said, "I'm a little nervous, but I'm excited." I leaned over to him and said, "Guess what, I'm a little nervous too. That's the awesome thing about life. The most amazing things come from facing our fears!" He just smiled at me.

As we got onto the airplane, Grant was definitely more excited than nervous. I let him have the window seat, and he could not wait to take off. We took pictures of him in his seat to text to Dad. He was smiling from ear to ear. When the plane took off, he looked out the window in amazement. At one point he said, "I'm afraid of heights, but I'm looking down and I'm not scared at all!" As we hit turbulence a few times, my heart skipped a beat, but I wasn't about to let him know I was ready to be off of that airplane.

When the plane landed, he could not wait to get off the plane to see my parents, but before we walked through the gates, he leaned over to me and said, "Mom, we faced our fears, and it was awesome!"

When I was pregnant with Hunter, I used to sing the Leann Womack song "I hope you dance" to my belly. The words to that song are so true, and are exactly what I hope for for my kiddos. I want them to face their fears and live life to the fullest and, of course, dance!

 "I Hope You Dance"

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',
Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)

I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

Dance....I hope you dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)

Sometimes people are not who we would like for them to be

The week I left to go home was a tough one. School had just let out and the change was really affecting Hunter. When the change kicks in, so does his harassment of Grant. This in turn leads to meltdown central in our home. Hunter's new way of dealing with his stress is to call Grant names. His favorites are "idiot, " "stupid, " and his new found, pre-teen cuss word, "ass".

We made a prompt trip to the therapist's office where I continually ask her to set up a wine bar, but it still has not happened. Her words were helpful, truthful, and painful beyond words. Hunter, Grant, and I went to this appointment. We normally start out by letting her know what we would like to talk about during the session. I immediately told her the words Hunter had been using towards Grant, and how hurtful they were to him. Hunter reiterated with , "Well, he is stupid!"

After asking Grant how this behavior makes him feel and trying to get an answer out of Hunter, she laid it all out on the table! She looked at Grant and told him that sometimes people are not who we would like them to be. Hunter probably won't be the big brother you would like for him to be, so you have to stop hoping for that to happen. Sometimes moms and dads are not the parents we need, and sometimes brothers and sisters are not the siblings we need. Hunter is just not capable right now of being the big brother you should be able to look up to, so you have to stop doing that and know that this has nothing to do with you! You can't let him determine your self-worth.

Hunter then proceeded to tell her she was rude, and she let him know she was just being honest. I was floored! She was not rude at all, but she was truthful. The truth is that as a parent of a kid with Aspergers, I am constantly protecting him from kids at school and worrying about his future. I am always trying to keep him on the right track, but fail often at this task. As much as I love him with all of my heart, there is still this ego-centric side that can be hard to like. It is the part of the syndrome I like the least. It is the part that makes me angry and scared for what his future holds. It makes me scared for what his relationships will be like in the future. It makes me sad for the relationship that may end up lost with his brother.

I have been told that many of the symptoms of Aspergers level out by the end of high school and beginning of college. My hope is that with a lot of hard work, I can teach Hunter how to love others and himself and lead him down a path for a happy and successful life. I also hope to teach Grant how to love his brother, but to never lose sight of his self-worth and confidence. I hope I am up for the task!

Fasten your seatbelts

Finally, I am writing again. The past few weeks have been hectic. I made an unexpected trip home where there was no internet access and things were crazy busy. As I already knew, writing is my solace. I need it to survive this crazy life I am living. This is my warning to all of you...I am locked and loaded and ready to unload everything that's been on my mind for the past few weeks. Fasten your seat belts ladies and gentlemen, it could be a bumpy ride :-)

Tuesday, June 4, 2013

Finding the light

Yesterday, I had Grant's (my non-aspie 7 year-old) annual speech IEP meeting. At our last meeting the teachers had asked me if they could test him for dyslexia. My heart sank just a little. I have to admit that the first thought I had was, "Oh no, not something else!" I immediately agreed to the testing and then started asking questions.

I found out that the reason they wanted to test him was because all of his other grades were so high and his reading was average. Most people with dyslexia have a higher than normal IQ, so when kids are excelling in everything else but reading, it's a huge red flag.

I walked into the meeting  yesterday knowing that they probably had the results of the test. I was eerily calm. Part of my brain was saying, "You should be nervous." The other part of my brain was saying, "You''ve got this!" As expected, his tests showed that he has dyslexia. The good news is that we caught it early, and with intervention, he will be fine. He is so smart and sweet and wise beyond his years. He's got this!!

After the meeting, I got into my car and just took a deep breath. I sat there and thought how different this meeting was from the meeting when we got Hunter's diagnosis. Dyslexia vs. Aspergers/ADHD.  The difference is that there is a light at the end of this Dyslexia tunnel. With Aspergers/Autism, there is just a hope to find that light. There is a constant search for that light for our kids!

When we received Hunter's diagnosis, we were younger and this was our first child. We had not been put through the ringer yet. We didn't know what was in store. We only knew that our baby was not fitting into this imaginary box that society had made for him, and no one seemed to have any answers!! That's the thing with spectrum disorders, the answers are scarce. You hear "what ifs" and "he probably won't ever be able to do this" and "I don't knows", but no one seems to have difinitive answers about anything. The enitre process is just waiting and hoping and working and fighting for your kid!!

So why did Grant's meeting feel so different (and almost comforting) yesterday? It felt different because when I walked out of that room, I had answers!! I know he is going to be okay. In 2 to 4 years, he will have mostly overcome this obstacle. I know that he will have 45 minute sessions every day of school, and he will learn how to manage this in his life. Will it be easy? No, but the difference is that there are answers and there is hope and there is an end to it all! He will be fine.

We have to find these same answers for kids on the spectrum. We need hope and knowledge for these kiddos and their parents!! We need more "everything will be fine" and "he will overcome this". We have to keep searching for that light at the end of the Autism tunnel It's there!! We just have to find it!


Monday, June 3, 2013

Update on the internal debate

Just a little bit of information for my wonderful Sassy Aspie followers...when Hunter got in the car today, the first words out of his mouth were, "Thanks for bringing my lunchbox today." I about fell over. Then, he continued the rest of the car ride fighting with his brother.

Good decision? Bad decision? I still don't know, but he said "Thank You"!!!

The internal debate

This morning I had an internal motherly debate that went on inside my head for 3 hours. Sounds serious, right? Well, my irrational debate was on whether or not I should take Hunter (my 12 year-old Aspie) his lunchbox. Now, I just sound crazy, so let me explain.

We are in our final week of school. Actually, this is his last full day of school, so his brain has completely "left the building"! Now, I know this is going on, so after I packed his lunch this morning, I put it right next to his bag. Then, I repeated over and over in just a few minutes time, "Don't forget your lunchbox!!!"

Fast forward 15 minutes... as I'm dropping him off at school, he suddenly yells out in a panicked tone, "Oh no, I forgot my lunchbox." My tough mom reply was, " Well, you are just going to have to eat there."
This began a complete moment of drama. He explained to me that he was out of lunch money and it was too late in the school year to turn money in and blah, blah, blah! I know that the school furnishes sandwiches in these cases, so I told him I had a meeting at school for Grant (my non-aspie 7 year-old), and he was going to have to eat the school  lunch.  Then, he screamed, "You will bring my lunch to me, got out of the car, and slammed the door!"

I drove home thinking there was no way I was taking this ungrateful child his lunch. It would only be teaching him a bad lesson about how to treat me. However, the mom guilt grew and grew, and 3 1/2 hours later I found myself at the entrance of the school carrying that damn lunchbox.

Was I being a good mom or a bad mom? Should I have stuck to my guns and used this as a teachable moment about respect and responsibility? After further contemplation, probably.  However, for my own satisfaction, I took it to him 2 minutes before lunch period started just to make him sweat a little. Did he catch this subtle hint that I wasn't going to take this attitude? Heck no he didn't catch the hint! I'm not kidding myself. His aspie mind told him it was my job to bring him his lunchbox. Next time will I stick to my guns? Depends on the day. What I know for sure is that no matter what decision I make, I will doubt my decision. I'm a mom after all.