Holiday Fun?

The Holidays are a wonderful time. I have always loved being around family, laughing and having fun during the Holidays. While I grow more patient at Holiday time...Phoebe grows much less patient, and much more anxious.

Last year, on New Years I nearly had a nervous breakdown...in fact, you might say I did. The whole family made a trip to Traverse City. It sounded like so much fun! I hyped it up, I planned for a sitter...I did everything I was supposed to do. Yep.. I did everything I was supposed to, and I was thinking everything would go smoothly. However, Phoebe did not do everything I thought she should do, and it did not go smoothly for her. We stayed in a condo unit, next to my parents and down from my brother and his family. This alone caused Phoebe enough anxiety for a year. She wasn't sure which place to go to next. She was literally turning in circles, or sound asleep on the couch as a way of coping. We took the kids swimming, had a party, and all the kids had a good time...except Phoebe. She was stressed out, tired, anxious, and just a mess. My "vision" of a great New Years really had nothing to do with her "vision". I was really only thinking of my own fun, and my own selfish wants. (yes this does happen) Phoebe had quite a few meltdowns on this weekend- and so did I.

Needless to say, after many weeks of thinking and wondering what was wrong with her meds...it became clear. She's autistic. You can call it what you want, but she is on the spectrum. She can't handle unstructured events with many variables, and behaviors come out in full force when this happens. No school, snowy weather, possible fireworks, and schedule changes cause these unpredictable behaviors. Whether I want it or not, I have to structure my life better to make her life better. If any of you know me...this isn't easy. I am a "go with the flow" kind of girl. Well, at least I used to be.

This Holiday season I plan to do what we always do and get together with family. Phoebe is used to this, and finds comfort in all our families houses. Will I attempt to take her back up north? Not likely. Will I find something that she likes to do, at home, and within her comfort range? More Likely. Will she get up every hour on Christmas Eve? Yes. Will I be more tired than Santa on Christmas? It's possible. Will my life be more peaceful, if she is comfortable? YES. So, for this holiday season I will keep autism in mind (as if I would forget), and try to keep the structure for this child, because her happiness is my happiness.

TIRED and the Holidays

I get this question a lot..."Is your daughter higher functioning?" How do you answer that. Today, she was higher functioning because she only asked me for pretzels 60 times rather than 50. However, yesterday she had a meltdown at 3 a.m. when I refused to give her salami. So, I guess that would be a lower functioning day. To this autism mom, she is what she is. She is verbal to a fault, and can use words correctly in most situations. Does she always know what she is saying...I don't think so. Then other times- oh yes she does.

A few years ago, I took her to a clinic at Yale University. What the Social Worker said to me has stuck with me. He said..."this child looks to you for all the information in her world. Including how she should react to situations, what is wrong and what is right, and what her answers should be." To put it lightly, all I could think was...OH MY GOD. Really? I guess I knew that, but that's a lot of pressure. With "average" kids they look to you, but find their way for some things. This child would probably never do that. So, in our autism world let's break this down. When I'm mad- she's mad. When I'm sad- she cries real tears. If I'm hurt- she is quiet and afraid. She gets all her cues from me.

Yesterday, I had a 3 hour art class, and I painted and got the house ready for Halloween. I put together treat bags for school, and got everyone up and out to school. After class at 3, I raced home got everyone to help get the pumpkins carved and got everyone ready for trick or treating. Phoebe was a little undone. Then I got mad at her. She was so uptight, and unsure - and our routine was not the same. She was so anxious about the trick or treating. She made it to about 15 houses, and then wanted to go home. When I dropped her off with her Nana..all I could think was how much I'd like to be home. I wonder how much of my tiredness was wearing off on her? Halloween was exhausting, and fun...all at the same time. Look out Christmas...here we come. I'm going to need some 5 hour energy.

Memory

Phoebe has a weird memory. She can memorize names, addresses, and pet names. If you know her...you know what I am talking about. In the first grade, her teacher (love her) told me after the first day of school was over that Phoebe had sat on the playground on a bench. When the teacher asked her what she was doing, Phoebe began to point at the children and say their names...one by one. The teacher had never read the class list, nor did she even know the names. Phoebe must have seen them....and put them to memory.

In the 4th grade, the General Education students were doing a Science Project. I asked Phoebe if she would like to do one...and she said yes. She says "Yes, No, Yes, No"to just about everything I ask her, so I wasn't impressed. Her idea was "name all the 4th graders." We took a poster board, and Phoebe named every 4th Grader at Arrowwood Elementary. Phoebe was not in a Gen. Ed. room...she was contained in an autism class. I wrote...and she talked. I wrote all the names, by class, on to the board. At the end...there were even a few that Phoebe said..."OH! Take them off...they left, or they moved." Most of Phoebe's peers were quite impressed with her project....as most of them didn't know all the names.

Most recently, Brendan has become ultra obsessed with Football. This includes the NFL, and MSU. While watching the Superbowl last January, we were struggling to think of the Green Bay's QB's name. From out of Phoebe's room we heard..."AARON RODGERS! BRETT FAVRE USED TO BE...BUT HE LEFT." I was amazed. This continues now...on Sunday when we watch.

So, if you happen to run in to us, and she wants to know your name. Just tell her, because she won't forget. And, when I'm old...she'll help me to remember.

This autism thing is a strange disorder.

Night of the living Autism....

Most autistic children have times where they don't sleep well. This is very true in our house as well. However, Phoebe has this incredible ability to scare me to death. Although she is the loudest person I know, not knowing social boundaries, and when to stop...she is like a STEALTH bomber at night.

The scene is not unlike the scene from the movie.."SIGNS." I am standing in the kitchen getting things all cleaned up when I turn to face my five foot, four inch daughter, who is slightly slumped over with her head to the side. When I say I turn to face her, I mean she is about 5 inches from my face (it's that social boundaries thing again) I usually scream, and jump to which she says..."can I have a glass of water?" I didn't hear her open her door, or walk down the hall (my house is small), or come and breathe right next to me. She gets her drink and heads back to her room. This process then takes me another 2 hours to get my heart to settle down.

Tonight was not much different. This time it was after dinner...and I was cleaning my room while the kids played outside with the neighbors. I was doing my usual talking to myself, rationalizing the world, and getting my schedule figured out...when I turned towards my doorway to the words..."MOM, THE NEIGHBORS GOT A CAT." I think I must have jumped back 2 feet, and screamed. I didn't hear the front door open, nor did she yell out for me, as usual.

I laughed and told Phoebe she should dress like a Ghost, or a ZOMBIE for Halloween, to which she responded..."What's a Zombie?" I just laughed and she went back outside.

:)

Autism and divorce aside

Phoebe had oral surgery on Monday. SURGERY. I was a nervous wreck, but I buried that way down deep, so that my little girl wouldn't panic. She looks to me for all her information on how to react, how to act, etc. I am her world. So, I put on a happy face and drove her down to the hospital at 5:30 am. I hid every morsel of food in this house the night before and turned off the water, locked cabinets and slept in the living room- so that she wouldn't eat or drink anything after midnight.

We arrived at Hurley Hospital at 6:10 am. Phoebe's dad drove in right behind us. On this day, her dad and I put autism aside. We put divorce aside. We were Phoebe's parents and we were there for her. I kept my game face on through the IV placement (even though I looked away), and I even kept it together when she was in pre-op. Once the nurse came to get her and she turned the corner for the operating room - I let loose. I sobbed. My ex-husband put an arm around my shoulder and comforted me. We put autism and divorce aside, and sat together for 3 hours while they worked on Phoebe's mouth. We talked, and laughed, played games on the smart phones, and tried to keep each other occupied. At one point, he said if I didn't stop tapping my foot he was going to sit on the other side of the room. That got a smile.

Finally, Phoebe was awake and in recovery. When they came out- they said she was asking for....MOM. I smiled and he chuckled. I got to her, and she was sleepy and grumpy, but doing well. Her first words were..."can we go home now?" I said..."pretty soon." Then she said. "I want dad now." Then I chuckled.

Once in the recovery room- Phoebe did great and got to leave pretty quickly. She was ready to go. I got the car, and her dad brought her in a wheelchair. She got in, and with a few short good-byes we left. Before we headed out, her dad and I just looked at each other and nodded. We put divorce aside. (For once)

Small Breaks and the Future

The kids have gone to see their dad for a few short days. I revel in my small breaks. I use them to try and get laundry done, grocery shopping, write blogs, etc.

The last few weeks of summer are a tough one for Phoebe. She gets very anxious about what is to come. It's not unlike the end of the year...when she gets very agitated about summer. I have had 1000 questions this week about when school starts, what the bus number will be, can I name her teacher (even though she knows her name), and who she'll see. I have learned to answer every time. I reassure her that it's going to be fine, and we have started to count to the days on a calendar. We even went school shopping for supplies, which lasted 10 minutes...when she got her usual markers, dry-erase board, dry erase markers, and play-doh. (none of these are needed at school)

It's hard to believe that she is technically in 7th grade. This summer I have started the "worry" of what will happen to her as she ages, and as I age too. There are options- but not many. The diagnoses of PDD-NOS leaves many questions, and as I research the diagnosis online...it really leaves a lot more questions than when I started. I have found that many parents of kids diagnosed with PDD-NOS have similar issues going on with their children such as behaviors, anxiety, depression, sadness, etc. It doesn't help that she is also a 12 year old girl, with normal emotions and girl issues. (Like any of us ladies like that) So, are these girl issues, or PDD issues? Who really knows or can tell...and what difference? It's all relevant. I can remember 2 years ago when she got her period for the 2nd month in a row and proclaimed..."AGAIN?" (normal response) I just laughed..."Yes, Phoebe...again." Or, when she told her cousin..."I have blood down there." (not normal response) Good lord, someone kill me now. I have to laugh....or cry, and sometimes both.

I look forward to the changes this year for both Phoebe, Brendan and myself. It's hard to believe my son is in 3rd grade, and chasing his dream of football, and that Phoebe is in 7th grade learning by watching. Both kids are growing, and achieving, and evolving, and this is good ...for all of us. :)

Summer....

Phoebe looks "normal". Phoebe can talk pretty well. Phoebe is the size of an adult.

Phoebe is Autistic.

She has PDD-NOS (don't know what that is? Pervasive Developmental Disorder - Not Otherwise Specified) To me...this is what it means: Phoebe needs CONSTANT attention- good or bad. She does not differentiate between the two, so that causes a challenge. Phoebe is afraid of new situations. Phoebe is very afraid of fireworks, thunder and lightening and tornados. Phoebe has the mentality of a 6 year old sometimes. She doesn't get sarcasm, or understand most jokes. She learns from watching and listening, and says funny things- and knows they are funny, because she heard people laugh when they were told before. She has poor fine motor skills, but can write. She also has memorized the names of all the kids in her classes since the 1st grade, and can name them in order. She thrives on schedule, and lists of what will be happening and loves, loves, loves to be around other children.

She also loves me so much- she hates me. If I am more than 10 feet away she checks in. I am her world- and she gets her information about the world from me, so we end up being a close family. Does it annoy me sometimes? YOU BET. There are times I want to run away screaming at the top of my lungs...but I don't (most of the time). Sometimes, I even laugh so hard it hurts my stomach. I find many of her little "things" funny.

The 4th of July is always a challenge - as Fireworks scare the heck out of her. Even one crack of a small firework and she RUNS for cover. (I admit- sometimes it's funny) We have learned to let her dictate how the 4th goes, and when she is ready to leave. I went with her this year, and it went fine. It's sad that something can cause such fear in someone.

Next week, summer school starts for her, and that again will be a transition for her. She will be very excited to get going- and she will enjoy the routine.

I can't say I won't enjoy it either. Have a great summer!