Breaking through not down- Autism, twins, life
Sunday, September 23, 2012
Going through the past
On an autism bulletin board I was posting for answers for Mia in 2007 when they were 18 months old. These are those entries. I won't post the answers from others just mine. Please excuse some of the spelling errors etc.
Jan 19 2007
Hi my name is Courtney mother of 18 month old twins. I have been a member for a while but a little shy because I am still really confused. (samling helped me a lot when I first joined)
I know my daughter (Mia the youngest) is to young for them to state she has autism. But they have come as far as saying in medical records that she has autistic traits. (they claim so she can have all these tests without restrictions)
The poor little thing had to have an MRI done yesterday and it broke my heart. She has therapy 3 times a week (PT,OT & ECD), she has another eeg scheduled, and genetic testing for Monday.
I know this is all important to figure out why she has low tone, only has 2 words (Hi and in (therapy for motor skills we kept telling her in in), crawl is weak, and just a lot of other issues that I have noticed (biting herself, staring of at corners of the ceiling)
But is there a time to just say screw it? I want to cont. with the therapy but a I don't like seeing an IV in my little girls arm. I know something is wrong and I don't think it is some mysterious seizures that they claim she might have in her sleep. I mean do these tests really tell them anything? I have planned that after this round that is all, I don't want to put her through anymore.
Is it possible for her to still be loving but autistic? Granted face touching for kisses are rarely allowed, but hugs are always welcomed. She also lets me stroke her hair and give her compression massages. Are all autistic kids not as affectionate
I am still really confused and since the Doctors when ever I bring up the A word they get all like no no no no she isn't.
I am going through the memories to learn more, I seem to learn more about it everyday. I guess I just wanted to say hi and express my feeling of being lost somewhere where people will understand.
BTW her sister is running and talking and crazy. I love them both very much.
Jan 23 2007
I thought that but the Dr. keep saying that she is so loving that she can't be (but her kisses are like fishie kisses, and her hugs are more like a head butt rub thing)
Just found out the the genetic Dr. doesn't feel she has anything in that area wrong. Did find out she needs glasses in the near future. Still waiting for the MRI info. But I just feel what other tests can they do to her? MRI's, EEG's, blood tests, urine tests, and review of what she eats.
But she got a giraffe today after her eye appointment that she likes to rub on her nose.
I feel the twin part is good (because I love them both and they always have a friend) and bad if she ever realizes that her sister doesn't have all these tests done but she does.
I guess I just believe the gut feeling of the mother is usually the best test ever.
Jan 31 2007
Well now the results for the MRI came back (some sort of demyelination) which could be a metabolic disorder. I don't really know. I have tried to search on it but I really don't know enough (keep getting stuff on MS)
But who knows....I am waiting for a phone call so I can stop freaking out. It just amazes me how many things could be wrong.
All I know is in the spring we are all going to Sesame Place to see Elmo. My little girl needs a break.
April 12 2007
Just wanted to add a little update..
Mia is still doing therapy we are waiting for a speech therapist.
We are trying to enroll both of them into daycare. I don't know how I will afford it ($1600 a month) and I make almost $1000 to much for help from the state for daycare. But she is getting on Medicaid..we are waiting for the paper work now. The only problem is since she isn't walking most daycares want to put her in with the infants. She is on the level with some motor skills but I would hate to put her there.
Learning a few things about her condition I believe she has a gluten intolerance and I found that is normal with autistic kids I don't think diet change is a cure but I have restrict gluten and switched to goats milk and she has been happier and more vocal. The reason for her eczema is I believe an allergy to food (most likely gluton)
We have been rescheduled alot for an orthopedic hopefully by the end of the month she will see one and get braces for her little legs so she can walk.
So we are waiting for tests again...she has had so much blood work done (for retts and vitamin diffiancy)
We are also going to get a CDSA in hopes that it is just because she needs vitamin B and has a yeast overgrowth. But it is again just ruling out alot of what ifs to force the doctors to diagnose her.
Sept 9 2007
why doesn't my insurance cover anything that has development delay or pdd or autism labeled on it but they paid for her MRI's which was for her delay? Why do they pick and choose what they pay for? Why even though no one has told me well your daughter has this the insurance company labels her as such? Why do they make it so hard for me to take care of my kids?? Why did it only cost me $50 after my 2wk stay in the hospital due to almost bleeding to death and having to get blood and emergency surgery afterwards....why is it now they won't even pay for a $100 dollar visit???? Now I have my broker working his ass off to find me a different insurance so that when she turns 3 and the state drops her out of that program I won't be stuck with huge medical bills. Why do I keep seeing tons of the support ribbons around now...why did this happen?
Major mindless vent......no one has to answer....I am just frustrated.
Oct 3 2007
Well I think I should update.
Well they want me to bring in her twin to get tested and that is when they have someone there to talk to. My case worker suggested. So yeah I just don't want to burst into tears I mean I am sad but not really (like almost in mourning of a life that I am not sure she will be able to have) and I don't want them to think that I regret her or something. Her father "jokes" about returning her...the worst sense of humor and honestly he doesn't deserve the love that she gives so willingly. It is actually really hard on her sister who hasn't slept right since they told us and alot of temper tantrums. Pretty sure she senses everything that I am trying to push through.
Oct 5 2007
Mia is now 26 months (but I just say 2 years never wanted to be on of those mother yes little Billy is 78 months old isn't he darling)
Finally got a close as a diagnosis as possible today with a developmental pedi. she referred us to Delaware Autism Program (DAP). She said she has 3 of the classic signs etc etc. Just what I have been saying but of course was told no no she isn't. Also we have had every test done and everything comes back normal.
Emotionally I am just so beat down. Their father moved out in June, I have been unable to make ends meet, and I haven't had anyone close to me to really understand what it is I am feeling. But I am allowing myself tonite to feel sorry for myself and then that's all because this really isn't about me and Mia isn't any different then she was before our appointment. Our local program has offered be counseling and I think I might take them up on it.
She got glasses (which she broke in the first month and now we are waiting for them to get fixed) they seemed to balance her. She walks like a drunken sailor and glasses allow her to climb on the playground equipment.
We started the GFCF diet but unable to follow through completely due to her school needing a note for her doctor. For some reason that is taking some time to get. But after a week of limited if any dairy she did independently say woof when she picked up her dog.
We have also started taking Epsom salt baths. She seems to have gotten different rashes then normal from this but it does seem to calm her down when normally she would freak out after her bathes. Now she will go straight to bed so if anything it has helped her sleep more soundly.
Oct 5 2007
Yeah I know gfcf is a long shot but like I said before her father and his mother both have gluten issues so it is worth a shot. She doesn't seem to like bread all that much (unless it is covered in butter or cream cheese) the dry texture gets to her. Pasta is her weakness and I have found a rice pasta in animal shapes that tastes like whole wheat pasta to me. I think not having bread in the house will hurt me more.
The only soap I use is shampoo now. Which is needed because she likes the sandbox ALOT and likes to dump it on her head. It amazes me that the aquaphor is the only thing that works (and you know I remember you telling me about the rashes and I brought it up to a doctor once and he laughed at me and said that is the oddest thing he has ever heard...we don't see him anymore) I will ask about the claritin because benodryl doesn't seem to cut it much (there is always this one spot on the back of her thigh).
Oct 26 2007
We are going to our first appt at a DAN (defeat autism now www.autism.com) doctor tomorrow. I hate putting so much faith in something that may not work. I also hate that it will be all out of pocket but if it works.....Alot of patients notice a difference after the first appt. I keep thinking this is how she is stop trying to change improve her. But I just don't want her to be at the 6-9months they placed her at. I am use to her quirks
Nov 5 2007
when she has bad days it always makes her sister act out more. I just hope her fits don't get any worse. I don't think I can make it so she doesn't hurt herself if she amps it up anymore.
And when you buy clothes according to their fancy that certain month/week/day is that giving in? Shouldn't she be comfy? If cloth on a zipper pisses her off, and layering her clothes makes her rip at them or a normal diaper makes her all itchy shouldn't I just let her be comfy? Is it wrong that I allow her these little "perks" but if her sister doesn't want something on her I tell her she has to wear it?
Why won't my local autism program call me back?? Why can't I get free stuff? I see parents that have more money then I do carting around the medicaid why do I have to shell out $400 for glasses that she breaks every 2wks.
Is it wrong for me to say I don't really know my little girl?
Jun 12 2008
I just again needed somewhere to vent my girls will be 3 in July (wow) and today after a few months of concern and me sort of in denial Chloe's (the oldest twin) the(along with a Dr from the local developmental program) agrees that she is very much in the spectrum with alot of her social skills. Which leads them to believe she has aspergers. This really hit me in the gut and I am sort of lost at the moment as to what to do...with Mia I knew what was wrong but with Chloe when I explain what she does to people they just say eh she is a normal toddler. There is a family in my neighborhood that has 3 kids one with autism, one with aspergers... I was so tempted to run over there and just I don't know have someone to cry to that understands......
Nov 9 2008
Not sure where to put this but my daughter has been really doing some odd things lately. More head banging as usual and today she bite me twice HARD and wouldn't let go (she took her sisters teddy I got it from her to give her, her teddy before I could she latched on to my hand) and she is humping stuffed animals now. She wears a diaper so I am not really sure what she is getting from this..but she does it in a sitting position and just rams the poor stuffies. Her eyes cross and she does this even with her car seat on. I am sure it is just so sort of thing that looks like she is humping but it really looks like she does and she does it in daycare at the gym and in front of my family and in front of anyone. I don't know what to do. I hope this phase goes away fast..if not suggestions?
March 22 2009
feels like i have lost out alot of being a mom with a child that still cant say mom...also hate it when people don't believe in biomedical treatment for people with asd
wish I could have gotten more support but I still feel alone.
Sep 23 2009
Mia peed in the potty last night....still don't think it will happen until another year. I am just tired of diapers. A kids poop is just so much more...well MORE.
Sept 9 2010
I am starting to feel like I shouldn't attempt to take Mia to normal kid activities. When Chloe is invited to a party they invite her sister. I bring all her food with me but I feel like she is so disruptive to everyone else that I shouldn't anymore. Everyone always thinks she is a baby and that her sister is the bigger sister. They are twins...it hurts Chloe when they call Mia a baby. But she does wear diapers and insists on using a binky. I can't find any suitable chewy toy for her. I have tried them all. Also since our medicaid is gone not sure what they hell I am going to do about diapers. She is 4 how much longer is she going to fit in a size 6? and how much longer am I going to be able to change her. My nose hurts from a recent head butt, she is just so strong. I am getting so worn out but no one wants to help me. I need a break but I have no one and I am so broke so I can't pay anyone. I am burnt out. I love my girls but I feel like i am failing them.
April 25 2011
they put a safety hold in my daughters IEP/displine plan...I totally understand but still really upsets me. She will find an adult say kick and kick. As wonderful as it is that she is talking and acting it out...it hurts. She hurts me daily and I don't know what to do about it. She is so sweet....I just wish she would stop hurting others.
Feb 23 2012
Seriously I feel like Mia will never be out of diapers. She is now 6 she will sit on the potty every hour. She will wait for the bus/car ride or recess to go in her pull up. I feel like when she poops she has to walk and can't do it sitting down (or she feels she has to walk) So she hides. I always get the poo alarm in my head when it is just to late. When I am cooking dinner or helping her sister with her homework or even just in the potty myself she uses those times to poop. Then she will play with it (almost microwaved it once). We always dispose of it properly in the potty. She is learning that is where it goes but just doesn't grasp doing it while on the potty. We even have it in her IEP now. I don't know what to do anymore. I have tried charts, schedules, books, dvds, elmo potty doll, demo with her sister. I am about to take off a month of school with her and just camp out in the bathroom.
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