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.
🙂
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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)
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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. 🙂
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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!
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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.
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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.
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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.

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Back to reality

I am excited to get back to the real world and work a full-time schedule. In the back of my mind, I wonder how this will all work, and hope that all goes well. Who am I kidding? This is autism – and it never goes as planned. I am lucky to have a great family that helps, but don’t really want the burden to fall on them, so I will work hard to make it work. In this world of 1 in 100 kids – I would hope to think that companies, and people are starting the hear the word “autism” more often, and start to understand it’s complexities.

The strangest part about all of this is, that if Phoebe could put in to words how she is feeling about all this–I believe she would say the same thing. She is excited to get back to school, be on a schedule, and hopes her anxiety doesn’t get the best of her.
Maybe we aren’t really that much different. Here’s to a good year. 😉
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Trying new meds

Trying new meds for this child is like picking out a needle in a haystack. We are starting on a new trial of meds- and so far so good. Not sure how its going – as I never can really tell huge changes. Maybe because I see her constantly? No one understands the difficulties it takes to raise a child like this – let alone a sibling who is considered “normal”. While I spend time with both – I notice that her brother is needing more and more attention as well. He wants me to play with him, color with him, games, sports you name it. It’s very hard to spend time with both- without feeling guilty about the other. Don’t get me wrong- the younger, “normal” child gets the shaft..and he probably always will. I’ll figure this one out too. Just like everything else for them.

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Puberty

For the last year and 1/2 I have been getting my daughter shots to keep away the dreaded GIRL curse. Well- after a huge weight gain, I decided it was time to let “nature” take it’s course. This week, it decided to show up. Phoebe is 11 years old (barely), and mentally about a 6 year old at best. She is 5 feet 4 inches, and weighs about 150 pounds. We came up with a social story- and a plan, and for the first time I think I am more bothered by it then her. I called 3 times the first day at school to see how she was, only to find out she was great. She’s been less moody than normal, and actually almost pleasant at times. Could this be coincidence? I guess it’s time for this ’tism mom to be upset about something that a normal girl would go through – and not blame it on the disorder. Darn.

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