Thursday, December 23, 2010

Coming Clean to a Perfect Christmas

Christmas is here! I have always loved the holidays. My house always has more "stuff" out for Christmas than I have room for. It's not the Martha Stewart variety stuff either. Its the walking talking Santa Clauses and the singing reindeer. My Christmas trees are decorated with every home made ornament my kids have ever created. My friends with finer tastes called it the "crap tree". It's a real tree, too, I've always believed Santa needs a real tree and sticky needles to put the presents under.

I have always had a very traditional Christmas - ridiculously traditional. My kids' Christmas's are exactly the same as mine were when I was a kid. Christmas eve we go to the candle light service at church, come home have some snacks, then kids off to bed. Once kids are in bed, the adults spend hours feverishly wrapping the presents to get them under the tree. We truly believe that part of Christmas is waiting until the last minute. - I have been trying to change that part the past couple of years!

Christmas morning, EVERY Christmas morning, we have pictures of the kids climbing the stairs in their pjs heading to the tree. They race to their presents, Santa's are always wrapped in red and are ALWAYS the best ones, they rip them open and paper flies everywhere! This has always been my favorite part. I don't think a kid needs to be reserved and polite when it comes to Santa's gifts! I think Christmas is the perfect time for a kid to just be a kid! I love the Christmas chaos! After the Santa gifts, they move on to the rest of the presents.

Then it's the adults turn. The kids take turns playing Santa and passing out the gifts. The newest adult family members are always astounded at this part of the morning, the adults tear through their presents just like the kids! It is awesome! I know some people think it's awful, but I've always loved it!

Then we sit down for breakfast, some of the adults assembling the kids' new presents, nap time for the others until the big family meal. I have had the same Christmas for all but two years of my life. Before I had my kids, it was always at my parents' home with my siblings. After I had my kids, Christmas morning was always here with all my family and sometimes even my in-laws.

This year we are changing it up! After more than forty years of tradition, I am going to have a completely different Christmas! I am very excited about it, but at the same time, a somewhat bittersweet. Dad, Alex, Twin Sis and Myself are taking a vacation. Leaving our home for the holidays.

This is where I come clean, the bittersweet part. You see, the other reason I stayed away from writing for so long is because the last post before my long break was about Alex's sisters.

I had written about how protective they were of Alex and how close they were. Well, early in the summer, Big Sis moved out. She left on bad terms. She moved in with other family members. She didn't call home for weeks. My entire extended family became involved, and Alex and Twin Sis no longer want to see her and are scared to death of the extended family. I won't share all of the ugly details here.

Dad and I tried to encourage the kids to maintain a relationship with their sister, but they asked us to stop forcing them to see her. As far as the extended family, again, it is a choice made by Alex and Twin Sis, but Dad and I are fully comfortable with their decision.

Unfortunately for you, though, I will offer some unsolicited advice. As I have told you before, Big Sis was six when the Twins were born, an only child, grandchild and niece for all those years. Then, not only was her life interrupted by a sibling, but the chaos of twins, and on top of that, one with special needs that required a lot of extra attention. Big Sis did get knocked off her perch, we knew it then, we tried to compensate for it. She resented it and we knew it. We thought we handled it, but we didn't. Big Sis is in college now. I think her resentment and jealousy are behind this blowup. I don't think it is entirely conscious, though. Who knows when or if she might come around? I can't second guess the way we did things. We were definitely in uncharted territory. I do know now some things I would have done differently. I know what mistakes not to make with Twin Sis!

One big mistake we made is that we ignored the outside environment. Watch those around you. Remember, Big Sis was the only child in their lives as well. Other people don't understand why a special needs child needs extra attention, even family members. They will resent you also. I've said before that it seemed like my "Rocks" understood Alex better than some of the family... well, it turns out that they do! (Thank you Rocks and Rock Babies!!!) The extended family does not understand how we could "abandon" our other children to take care of our Fragile X child. Always remember, NO ONE KNOWS UNLESS THEY HAVE LIVED IT. Believe it or not, othher people do convey their feelings to your children, and eventually, your children will believe them.

OK... no more advice or grumbling....

Anyhow, that is what kept me from my writing for so long. Ironic how one of my last posts was on the siblings, I guess I couldn't see through the fog. We have mostly come to terms and are coping with our new family arrangement. We have our highs and lows, we didn't see this coming. We never expected Bis Sis and my family to behave the way they have. But the fact of the matter is that they did. We will always be our daughter's parents if she decides she wants us. Until then all will be fine. There are many people dealing with much worse situations!

With all this going on, our oldest daughter not being her, and there being no chance of ever having THAT Christmas again, we decided we should just start a new one! We have so many good things going on that we will focus on those... So, we are going to travel!

We are going to a place that is new to all of us. We rented has beautiful views of the mountains. It offers opportunities not available here in Missouri. We will be making new memories instead of dwelling on the old!

We are going to try to teach Alex and Twin Sis how to ski! That ought to be an interesting day! At the very least, it ought to be a very funny Christmas, as Dad is a TERRIBLE skier, and I haven't skied in years. Our house is remote enough that we may be able to spot some wildlife, and maybe do some snowmobiling. Anyhow, it will be a lot of fun! I do already know that next year we will be a warm climate vacation. I am already freezing my butt off here in Missouri!

I have decided though, that what I always thought was the perfect Christmas wasn't really. The PERFECT Christmas is on its way, it's whatever I decide to make it!

Know that what you have is perfect ... and laugh lots. MERRY PERFECT CHRISTMAS !!!!

Friday, December 17, 2010

High School Brought Out the Crazy

Wow, it's been almost eight months since my last post! As I read the last couple of entries it seems like those few months were a lifetime ago! It's amazing how quickly and drastically things change.

I didn't intentionally quit writing. I blew up another computer, then one day lead to another, then things just kept happening and I never could quite get back to it. My "Rocks" are probably going to be happy to see that I am writing again... remember?.... it's therapeutic, so now, maybe, I will leave them alone! My family has had a rough few months, so my Rocks have been busy.

As I looked back, so many of my posts have been about Alex's success at school. Middle School was very good to us. We miss Mrs. Teacher terribly. But, as it does each year, school ended, and this fall Alex and Twin Sis started high school. Uuuggggg.....For those of you with kids, high school is a big transition. For those of you that have a child with special needs, the word transition doesn't even come close!

Alex started off his school year so overwrought with anxiety that our lives were miserable. His days were even worse. New teachers, paras, a new school.. all of our favorite things!! Alex was so terrified that he wouldn't be able to control his anxiety that he became withdrawn.

Alex was rocking constantly, 24/7, not just at the times that should be high stress times for him, but all the time. He was rocking so violently that he broke the springs in the sofa. He wouldn't even eat dinner with us, he would wait until we were all done and then go to the table and eat by himself. Alex never wanted to leave the house. It broke Dad's and mine hearts. Even Twin Sis didn't know how to help him, and she ALWAYS KNOWS.

Alex wore himself out every day at school trying so hard to keep himself together. He got to the point where he would come home from school and want to go to bed. He was trying to keep himself in control at school, he was just killing himself while doing so. You see, when Alex loses control, he lashes out and pokes the face of whoever it is that's in "his space." Alex made it through the first five days of school!! Yeah!! But then it happened, just like always, EXCEPT....

We have a new principal, and well, let's just say it was UGLY!!! On the sixth day of school Principal Man informed Dad and I that Alex was suspended for ten days, Out of School! Alex had lashed out at his para. Principal Man chose to believe that Alex assaulted a staff member. Ummm... Nothing about Alex is aggressive! This behavior, by the way, is documented in Alex's IEP no less than 600 times! This is anxiety, this is Fragile X, this is ALEX!

Don't get me wrong, this is not acceptable behavior. This is part of his disability, though. This is a big part of why Alex is in special education classes. This is part of the school's job.

I had a few questions for Principal Man. Shocker, huh??? "Do you have any knowledge of Alex's special needs?" "Have you met Alex?" "Did you talk to his para or teacher about him in general and this incident?" "Do you know his diagnosis?" "Have you seen Alex's IEP?"...blah, blah, blah... He had some answers too. "No." "No." "No." "No." "No." ...blah, blah, blah...

Ok, now, let's just say Principal Man and I went on to have a discussion that would make a group of sailor's ears burn! And when he didn't listen, I went to everyone else in the school district, Alex was back in school the next day. Principal Man was NOT very happy. I was! But what a way to start a school year! Boy, was I screwed!

I am not sure who else in this world has seen that ever-so-attractive side of me, I know my husband hadn't. I am not sure what color his face was that day in Principal Man's office, but it just wasn't right. He seems to have recovered, though. Surprisingly, I do hope that side of me stays well buried! It scared the crap out of me! Don't get me wrong, I am advocate numero uno, but WOW!

The good news about our little fiasco is that with the help of all the school personnel and all our doctors and all our therapists, OUR Alex is back! He still struggles some, but is getting better and better at controlling his anxiety. Anxiety is NOT controlling him! It took us ALL a few months of working together, trial and error, and lots of patience, but hopefully we have found a solution.

The even bigger story here, though, is that despite two people's complete and utter craziness and bullheadedness, Principal Man and I have been able to come together and help Alex, and hopefully other students, too.

I had never been so blindsided as I was when Principal Man wanted to suspend Alex for a behavior that is directly related to his disability. He wasn't going to budge on the suspension, he didn't know Alex, he didn't know Fragile X Syndrome and he didn't seem to know much about the special education classes and students at all. Obviously, I wasn't budging, either!

I admit I was upset at hearing that Alex was going to be suspended.... Alright, REALLY UPSET! But I really, really did start our conversation relatively calm and mostly professional. I am not sure what happened that made me go crazy on Principal Man, maybe when I realized that he just didn't consider the student or special circumstances surrounding this student. I remember Principal Man telling me that I would "just have to respect his decision", I was so out of my mind that I told him that "I couldn't do that because it was an uneducated stupid one!"

Yeah.. yeah.. genius, I know! Feel free to use it!

I think in those few minutes, we both let out our "crazy" persons. The thing about it is, that in doing so, I don't think that Principal Man will ever make a decision like that without thinking first, of that completely crazy - and I am really using that term loosely - lady that stormed into his office. From that moment on, Principal Man has taken the needs and best interest of Alex and put them first every time something has come up. He has also done that with the other special education students and I will bet he is taking a bit more time with each student that comes to him.

Principal Man has also gone to great lengths to learn about the unique characteristics and needs of his students. Maybe that crazy lady made a point!

Who knew that two such vicious adversaries in the heat of battle could become such good partners and advocates for Alex? And again, who knew that such a disastrous moment could motivate a person to take such a special interest in other people, especially in special needs children.

Ironically, I have become very comfortable with Principal Man looking out for the best interests of both Alex and Twin Sis. Thank you Principal Man!!

Oh... and as far as that really crazy lady goes, she doesn't apologize, but promises to try really hard to stay hidden! Even I learned a few things that awful day!