As explained in my previous post, we are now waiting for a confirmed day to take Miss Priss back in for a new evaluation for autism. This is such a weird emotion for me…I don’t want her to have a diagnosis but at the same time I do. I want to find out what is going on with her and how to make things easier for her now and for her future. I want her to have access to therapies and professionals that can assist her with her needs (emotionally and physically) as well as assist me in how to be the best mom and caregiver for her that I can be. Holding her back another year in preschool is one of my goals. She is not ready – even her teachers and therapists agree. But because of laws, rules and regulations, without a medical and/or educational diagnosis of autism (or Aspurgers which is what we are thinking it is) then we cannot hold her back in preschool without her loosing all of her therapies which would be catastrophic for her and detrimental to her development.
Why does it have to be so difficult? I am her mother, I know my child. I know something isn’t right and I know that she is far from ready to step through those kindergarten doors. The teachers and therapists agree that she has more to learn and catch up on – she’ll be lost next year. It’s like setting her up to fail before she really even has a chance. How is this fair to her? And what happens if God forbid she doesn’t get a diagnosis because she’s not ‘on the spectrum’? What then? Is she just forced to go through and continue in school even though she has the mentality of a 3 1/2 to 4 year old? The only other option would be to hold her back and get therapies outside of school which will end up being very pricey. We can’t afford that.
Miss Priss has numerous symptoms. I just wish I could call someone and have them say what they think without all of the ‘we can’t guarantee anything at this point’ bullshit. I just want to scream at them, ‘just give me your opinion…that’s all I want. Am I wasting my time? Am I completely crazy for thinking this about my child?’ I mean I’ve heard from educational professionals that there are definite signs of Aspergers but nobody can give me what I want now. An answer. I know I need to be patient. Make the appointment for an evaluation and just wait like everyone else but I’m a planner…not knowing is driving me ape! School is almost over and after being told by a gazillion different places that they don’t accept our insurance I *finally* found a place that will take her. So now it’s the waiting game. A waiting game of 6-8 weeks for an appointment and then another however long to get some answers.
I’d love to hear what you think. If you have a child with autism or Aspergers please look over this list of some of her symptoms and tell me your thoughts. Since you already have a diagnosis with your child you probably know a lot more about this than I do.
- Makes up words
- Doesn’t seem to know how/want to play with other kids
- obsesses over things
- taste, smell, touch, noise
- EXTREMELY flexible (physically) seriously it’s almost sick!
- doesn’t like head or ears being touched
- Enjoys very spicy food
- Can do head stands all day w/o it bothering her.
- Only wants to wear ‘comfy pants’
- lack of empathy
- Seems to have regressed with family social behavior/trust issues.
- Fine Motor skills – trouble with
- Gross Motor – trouble with
- Hyper extends knees
- Pigeon toed slightly
- Sleeping habits
- takes 2-5 hour naps every day
- back to bed between 8-8:30
- ROUTINE, ROUTINE, ROUTINE
- Doesn’t like or do well with transitions
- Gets overly upset when she can’t get her point, idea or thought across
- Temper tantrums & very strong will
- Repetitive sounds, words, phrases or actions
- Doesn’t let things go easily will complain, obsess, tantrum, etc. longer than would be expected.
- sucks thumb with lovie in hand
- Won’t take bath or shower without major difficulty (I think it’s because of the noise and feel of the water on her skin)
- Mood swings
- Doesn’t like being touched by anyone other than mom (sometimes not even mom)
- Doesn’t like loud noises – covers ears
- Has some language delays but wants to know and remembers certain dates pretty well! (I.e. birthdays, holidays, etc.) and can repeat movie lines, commercials, songs, etc. verbatim.
- Can come off as rude
- Doesn’t always understand jokes or sarcasm and will get feelings hurt or become embarrassed easily.
- Sometimes has trouble answering questions.
- Some issues with attention span
- Doesn’t follow multiple step directions. Doesn’t always understand what she is being asked/told to do.
- Sometimes when in trouble and gets a consequence will laugh instead of being upset or learning lesson.
- Doesn’t seem to always understand taking turns.
- Very impatient
- Worries and obsesses over who is taking/picking up to/from school.
- Very rigid/black & white
I wish I could explain to you in detail how frustrating things are for her on a daily basis. Simple things like telling me she wants a snack or is tired, scared, frustrated or bored can take a long time. For her finding the words and picking them out of her ‘little files’ in her brain and making them come out of her mouth some days seem to be impossible and then the tantrums begin. Some days the tantrums won’t last long, other days they will go on for hours or even the rest of the day/night. I can’t imagine what it is like for her. How frustrating it is to know what you want/need but not always having the ability to express it so others understand it. But then other days she’s fine and things just seem to ‘click’ well that day and we can have a normal day without any drama. So as said before in a previous post, I never know which Miss Priss I’m going to wake to every morning. It’s either going to be a bad day or a good day and you never know. Trying to plan activities or events is like…well impossible.
The one thing that we have found is that she loves and does extremely well in acrobatics class and dance class. Sure she’s behind in dance, she’s in a class with girls that are 2 and 3 but she loves it. The acrobatics class that she is in she LOVES. Obsesses over really. We bought her some acro blocks for her birthday and they are all she plays with. She doesn’t have much interest in toys – she just wants to do her blocks all day and night long. But watching her in her classes is like the best thing in the world to me. She seems the most typical in there, aside from not really playing or interacting with the other girls. She seems content, entertained and most of all happy. And her teachers and the other older students are extremely impressed with her flexibility – she definitely shows potential. This is one of her biggest obsessions. It doesn’t matter where she is or what anyone else is doing…she will be doing this on chairs, step stools, the floor, someones knees, on a ledge or bench…anywhere!
So I’d love some advice from anyone out there that has a similar child or can give advice on Aspergers and/or evaluations. Please? I’m desperate.