Ideas- some good, some not-so-good

Turns out having presents out for the kids from mom wasn't the greatest idea after all. I thought maybe this year it wouldn't be a source of "obsession". I haven't done this in the past- and thought it should go well. Who am I kidding? I think that I have heard..."Can I open a present?" at least 500 times in the last 5 days. I just keep reiterating that on Christmas they can open their presents. If you give them the tools- they'll know what to do right? HA! Doesn't matter how many times I have answered this question- I still get it at least every hour- if not more. I even get the stare down- as if she is trying to figure out a better way to ask. Brendan has only asked 100 times- and he finally stopped asking. When I told him about the man at the Soup Kitchen who was more than excited, and grateful to get a "goody bag" filled with an orange, some snacks and a card, Brendan stopped asking. (Hence, he gets the idea) Phoebe seemed less than impressed with the story- ending with..."so does Santa come both Christmas eve and Christmas day?"

I love the holidays and I refuse to think that I am "missing out" because of the limits of autism. This would just lead to me being sad about the "what could be's". So, for now (and I'm thinking for a looooong time) I will be excited to drive her and her brother around every night after Thanksgiving looking at Christmas lights, making cookies that look like someone has mysteriously licked the frosting off everyone one of them, missing many Christmas parties, endure the long nights of getting up every hour, early rising at 4 am...and the general excitement of Santa and what he will bring. This I do for my family...autism and all.

I attempt to do these things with the best of intentions. However, I think I might be causing more anxiety than necessary. (But, who better to push autism to the limits than the mother of a child with the disorder?) If I never tried- how will I know if she can accept it? Or at least tolerate it- at best? My routine girl has a brand new teacher this month, and this has been quite the transition for her. She is giving this teacher a run for her money. Behaviors are at their worst, and the change has caused lots of uncertainly in Mrs. Routines life. In an nice attempt to give us options for holiday break, she sent home some fun activities that Phoebe can do on a wipe board, and a few social stories that can help with the long time off. These have been useful, and we keep reading them over and over. The other idea her teacher sent home was that in order to keep Phoebe busy..."have her read 30 minutes each day." God love this teacher for trying, but I laughed out loud. How about 1/2 a minute?? She doesn't do ANYTHING for a 1/2 hour. Ever. Good ideas...bad ideas. She'll get to know Phoebe over time and see the attention span...but I truly thank her for trying. (It does show she cares)

Well- I am off to sit for a while in anticipation of being up all night on Santa/Phoebe watch. Have a great holiday!!

Christmas and Doctors reports

I must first start off writing that recently my ex took Phoebe to see a "Behavioral Psychologist" that we both agreed might be a good idea. For once, I did not attend the meeting- and let him take her. We were looking for help on medications and how to treat behaviors and deal with them on a daily basis. Maybe, just maybe, this doctor would have something profound to say. The visit was in October, and I received the report on Friday. It was one page, and then attached to this one page were copied documents on how to give Time-Outs, use 1-2-3 Magic, and another common method for behaviors. Not to sound condescending, but REALLY??? The report was on how we need to implement these strategies. I'm not a genius, but I do have a degree, and have been dealing with THIS child for 12 years now. You don't think I've tried this? Time-outs have never worked with her, as she has the attention span of a flea, and 1-2-3 Magic was comical as she would consistently wait until I got to 3 to even attempt to do what I was asking- making me look ridiculous. I am not sure what I expected, but I guess I wanted this doctor to look at OUR daughter and her case, and then come up with a few ideas. If he couldn't, I would have been more impressed with a suggestion of.."take her here", or "we don't really know." As a parent of an autistic child who has been to Yale Autism Clinic, Central Michigan Behavioral Clinic, 2 Psychologists, 2 Psychiatrists, a Neurologist, and Endocrinologist, a Pediatric Gynecologist, and an ABA Therapist - to name a few...I think that I must have the answers, and it's time that I figure out what works best for her on my own. There is no exact answer when the spectrum is as large as it is.

HOLIDAYS:)

Most of us love the holiday season. I am one of those people. I love cookies (who doesn't), and parties (who are we kidding...I don't go to parties), and getting together with family. Our routine has been pretty consistent the last few years, and you'd think that would make it easier on our Phoebe. Then again this is Autism, and you thought wrong. Christmas Eve is a challenge, and that's all I need to say. It's like having a newborn baby all over again. Last year, I can remember her getting up every 1/2 hour looking for Santa. (Because my daughter can read fluently - I'll just say that getting up every half hour starting at 9...makes the whole evening quite a comedy) This year, I may sleep on the couch, so that at least I can just yell from there and she'll go back in her room instead of LEAPING up out of my bed, and running to the living room.

Christmas morning is like most of yours- it only lasts a few minutes. Even with the ages of my children, we still get done with presents in about 20 minutes. There is no "making it last", or "slowing it down." This is pretty common in American families. However, when you are doing this at 5:30 am...it can make for a very long day. As much as we want to make Christmas day a very special one, this house tries to keep the routine as normal as possible. We are at 6 days out, and I have started to prepare her for Christmas Eve and Christmas Day activities. Thankfully, we have a fairly low key day hanging out at Nana and Papa's with our family.

The other wrench is having no school. This always causes a challenge with our Autism...but we have a plan, and hopefully that will help. (One can hope) Also, a nice long visit to her dads help me relax and prepare for another semester, and take some time for me. I will take this time to try and enjoy myself and re-fuel for the next 6 months. Happy Holidays. :)

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!

Summer

I have to have the summer off. Not for selfish reasons, or for the fact that it's so nice out- and I want to be at the beach. It's much deeper than that. My daughter is autistic. Pure and simple (which makes me laugh out loud- because nothing could be more complex.)....she needs me. Is it good for her to be with a sitter? Yes. It is good for me to be out of the house? Yes. The problem is... I can barely make enough money to cover her care- and the care for my son during the summer. And, she needs me. No one understands the complexities of her- except for me. I want to be there, to help her through the most difficult times (sometimes it's the passing of a thunderstorm in her world). I give her confidence that life will be ok.

My decision...is to quit my job, and get a teaching certificate. Laugh if you want...because now is not the greatest time to become a teacher. But, I need to have summer off...and I need to be able to be with my family. I will find a job working with children- and I know I will be a damn good teacher.

My daughter is autistic. Nothing more needs to be said.

In our "autism" world- I still have to watch Phoebe while she takes a bath. I can pretend she is independent, and will wash the soap out...however, it NEVER happens. I finally gave up. She can go to the tub for a relaxing bath- but to get clean I have to supervise. She says the same exact things she said when she was 4...."can I open my eyes with this shampoo mom?", and "I have to wash my butt." All very matter of fact questions- that she has learn to ask through her scripted life. Just like the same questions she asks when I get home (and has since she could talk)..."what are we doing tonight, and I don't like _____(fill in the blank) for dinner, I just want a sandwich." I have learned to ignore most of it- and I can't say I even hear it anymore.

One of my favorite stories about Phoebe is when we were on a plane to Yale University's Autism Clinic 2 summers ago. I let the airline know that there was a special needs child aboard, and that she could get very upset. When they announced it...it went something like this..."good afternoon, passengers...we'd like to inform you that there is a child with special needs aboard, and please be sensitive to her and her needs." Phoebe looked at me, and around her and said..."WHERE?" I laughed out loud and said..."I have no idea."

I guess it's only her mom that really knows she has special needs- to her, she's just Phoebe.

Everyone is growing up

I think my son has finally turned the "autism" corner. He is no longer nearly as agitated as he used to be by his sister. Recently, I was SCREAMING at Phoebe to calm down during a meltdown to which I heard..."Mom? How do you expect Phoebe to calm down when you are screaming..Calm DOWN!" Wow- that was a reality check at it's best. I had to agree with him. He is completely right. I have put tremendous pressure on this child- unintentionally. He has an absent father (for the most part), and a sister with special needs. I worry about his growth, his sensitivity, his happiness, and how he will cope with all this pressure. Then he looks me in the eyes and says things like..."MOM..hello it's autism...remember? And I have to agree with him. I think he may actually be starting to understand it more than I do. What a strong person he is and will be. Thanks little man...you make life so much easier to deal with.