This past week has been extremely difficult. I think more on myself than Macie, or Daddy, or Emma. I know that I bring on these "episodes" myself, and I tend to over think, over analyze, and dwell on things I can not change.
Last weekend I noticed Macie doing a lot of sensory seeking. When I say sensory seeking I mean: chewing things, climbing (more than usual), "zoning out", stimming more (rocking, staring at her fingers, spinning). I thought I was just over thinking things, but then I got the dreaded phone call from her teacher. She was asking me if we had made any major changes at home, or if Macie's routine changed significantly. I told her "no" to both questions with a lump in my throat the size of Texas. I say it all the time, but regression is my biggest fear with Macie, and this last week it seems like she is regressing back to some of her earlier behaviors. I can't put my finger on it, but something is going on with her. I went to wake her up from a nap one day last week and I got the blank stare.....the one where it seems she doesn't know who I am. She doesn't get upset, she doesn't push me away. She just stares with no expression on her face. Are they seizures? I've always wondered. From what I understand, kids with autism sometimes also have a seizure disorder. They aren't necessarily the seizures you might be thinking of (where they shake, and thrash, etc.). They can sometimes just be a temporary "zoning out". They aren't dangerous, just a bit unsettling and I am not even sure that's what it is.
I too have been in a "funk" for a bit. As Emma is developing, and talking SO much, saying her ABC's, counting to 10, forming sentences, having conversations with everyone, I find myself sad for Macie. She is struggling to communicate in every way. She doesn't use sign language, she's still struggling with PECS, and she is still struggling with her receptive language. We got another report card last week for Macie, and she is meeting, and exceeding all the goals set for her except the receptive piece. She is making progress, just not the "expected" progress. With her not being able to communicate effectively she gets frustrated very easily, and it's hard to calm her down and teach her what she needs to communicate- she shuts down. It makes me very sad to know that she probably has a lot to say, and she can't. I want to play dress up with her, have picnics, and do all the things with her that Emma is loving right now, but we can't! She's very resistant, and withdrawn right now. Emma tries so hard to help her by bringing her toys, food, water, etc., but Macie either gets mad, or ignores her.
We took both the girls to Airtastic on Saturday. They both loved it, and had a blast running around, bouncing, sliding, etc. There were two separate occasions that I ended up in tears. They were situations that had to do with Macie, and she had no clue that either situation was even happening- that's good, but I was aware, and it was just a reinforcement of how behind she is socially. I don't know that she will ever have the ability to make friends, and it just breaks my heart. I want her to have friends' and experience all the great things that I did as a child, and all the great things that Emma is experiencing.
It's so hard trying to be "tough", and not show my real feelings all the time. I keep a lot of it in because I know that my mood affects Macie sometimes. The "experts" say that you go through a grieving process when your child is diagnosed with autism. I agree with that 100%, but I don't believe that any parent who has a child(ren) with autism ever completes that process. I keep thinking I am getting through it, but then something happens and I go back a step or two. With autism there is no closure, no answers, no cure, and it's frustrating. There are so many ups and downs. We certainly celebrate the small things, but we are realists, and we are human therefore we also grieve the unknown.
Showing posts with label Macie. Show all posts
Showing posts with label Macie. Show all posts
Monday, April 16, 2012
Friday, March 23, 2012
A Few of the things Macie has taught me
1. Patience
2. "I love you" is just words. How you show it- that's where the meaning is.
3. Tolerance
4. To celebrate the small things, because those small things.....are actually HUGE!
5. There is nothing stronger than a Mommy's intuition.
6. That there is a long road ahead, and I don't want to travel it with anyone one else but her!
7. The light at the end of the tunnel isn't always so bright, but something as simple as a kiss, or hug can make that light just a little brighter.
A quote I read: "I would not change my Daughter for the world, but I would change the world for my Daughter." Author Unknown
2. "I love you" is just words. How you show it- that's where the meaning is.
3. Tolerance
4. To celebrate the small things, because those small things.....are actually HUGE!
5. There is nothing stronger than a Mommy's intuition.
6. That there is a long road ahead, and I don't want to travel it with anyone one else but her!
A quote I read: "I would not change my Daughter for the world, but I would change the world for my Daughter." Author Unknown
Monday, March 12, 2012
Unloading my brain
I haven't really blogged in a while, and I don't really know why. Too busy? Maybe. Too tired? Could be. Too lazy? Likely.
Do you ever feel like you get so far behind on blogging that you just can't catch up? I sit down and start an entry and I get bored with myself. I can only imagine that anyone reading the blog is WAY more bored than I am.
Anyway.......here's the scoop with the girls:
Macie is doing very well in school. She had a few rough patches the last few weeks, but she recovers pretty quickly. Two new little boys started in her class recently and that upsets her. They are upset in school, and that gets her going.
Her receptive language is blossoming right now. I can ask her to pick something up, and she will do it and bring the item to me. It's not 100%, but she's making huge gains in this area. When I grab a diaper and ask her to lay down, she finds a spot on the floor and lays down for me. Sounds so basic, but before changing her diaper involved some pretty hard core wrestling holds. She's doing great with her schedule at school. She is using the icons on there appropriately (eg. She brought the "change diaper" icon to one of her teachers when she pooped). She's doing AWESOME at puzzles, matching, numbers, colors, sharing, drawing, cutting with scissors. She plays Duck Duck Goose, she knows a ton of hand and body moves for songs. She's slowly learning to point to body parts, and wave good bye. We are so very proud of her, and how hard she is working.
Emma is a total clown. She is speaking in complete sentences, and it just blows my mind. An example: we were driving past a church the other day and she said "Mommy, I want to go to the Castle." "I princess." She just cracks me up! She is also in the "terrible two" stage I think. She won't eat anything I cook, and throws her food across the table while saying "No, I don't want it!". Then she says "I want chips. I want cookie. I want "yummies". We tell her "NO", and she throws a fit. When she throws her fit it gets Macie really upset. She covers her ears and starts crying. Dinner time is really fun around here lately. Last week Emma learned about going to bed without dinner. When I got her up in the morning her little tummy was growling. Needless to say, she scarfed down breakfast like she hadn't eaten in a week. Lesson learned? Not a chance!
She very opinionated, she knows what she wants, and she does not hesitate to let you know! My Mom calls this PAY BACK!!!
My mental state is still very up, and down. I have days where I want to dig a hole, climb in, and never come out. I also have days where I feel like I can conquer the world, and I want to scream it from the rooftop. I was filling out a survey for an autism website where I was trying to win an iPad for Macie. The second to last question on this survey was: "Would you take away your child's autism if you were able?" Without hesitation I said "heck yes I would.". The last question asked "would you take it away even if the qualities you love about your child went away?" I became stumped, and angry, and I felt like a horrible Mother for answering the way I did. I almost stopped right there and deleted this survey, but if I can't be honest with a stranger....how can I be honest with myself, or my family? After I thought about it I said "I love everything about my daughter, autism, or no autism.". I love her quirks, her personality, how she lights up when Daddy walks in the room, how excited she gets when her favorite cartoon comes on. I love how she doesn't judge, and accepts everyone and everything the same. She doesn't know how to lie, or discriminate. These are qualities that come with autism. Would I want to trade in the autism for those traits? No, not ideally. I love Macie no matter what, and that will never change. I would love to be able to teach her not to lie, discriminate, and to accept people as they are. If I took away the autism I would be able to teach her these things. By not taking away the autism she will be subjected to these things throughout her life. It breaks my heart that she is going to struggle her whole life in one way or another. She has many sensory issues, she needs routine, she doesn't speak, and we don't know if she ever will. She has quirks (rocking, spinning, flapping her arms) that are "socially unacceptable". EVERY. SINGLE. DAY I worry about her getting older and being bullied because she's "different". I worry about her not being able to make friends because of her social anxieties. I already see people looking at Macie differently. She's at that age where she should be able to speak, and not just grunt or tantrum. When you look at her, and she's calm, relaxed, happy- you would never know anything is wrong. When she wants something she gets upset because she can't tell us what it is that she wants. When she gets excited she flaps her arms. When she's on the playground, she watches the kids from a distance, she approaches them, flaps her arms and then backs away because she does not know what to do socially. THEN....add in the fact that she is a girl- there are so many people that don't understand that autism affects girls too. It's hard to be starred at when out in public. People tell you not to worry about what others think, but it's human nature for most to care. It's also human nature to care about someone judging you and/or your child when you have no control over it. It makes my mind race, and wonder how things are going to be years from now.
So.....moral of the story: I would take away the autism if I could. I realize all children have struggles, and I realize she would still have struggles but she wouldn't be "trapped" like she is now.
Do you ever feel like you get so far behind on blogging that you just can't catch up? I sit down and start an entry and I get bored with myself. I can only imagine that anyone reading the blog is WAY more bored than I am.
Anyway.......here's the scoop with the girls:
Macie is doing very well in school. She had a few rough patches the last few weeks, but she recovers pretty quickly. Two new little boys started in her class recently and that upsets her. They are upset in school, and that gets her going.
Her receptive language is blossoming right now. I can ask her to pick something up, and she will do it and bring the item to me. It's not 100%, but she's making huge gains in this area. When I grab a diaper and ask her to lay down, she finds a spot on the floor and lays down for me. Sounds so basic, but before changing her diaper involved some pretty hard core wrestling holds. She's doing great with her schedule at school. She is using the icons on there appropriately (eg. She brought the "change diaper" icon to one of her teachers when she pooped). She's doing AWESOME at puzzles, matching, numbers, colors, sharing, drawing, cutting with scissors. She plays Duck Duck Goose, she knows a ton of hand and body moves for songs. She's slowly learning to point to body parts, and wave good bye. We are so very proud of her, and how hard she is working.
Emma is a total clown. She is speaking in complete sentences, and it just blows my mind. An example: we were driving past a church the other day and she said "Mommy, I want to go to the Castle." "I princess." She just cracks me up! She is also in the "terrible two" stage I think. She won't eat anything I cook, and throws her food across the table while saying "No, I don't want it!". Then she says "I want chips. I want cookie. I want "yummies". We tell her "NO", and she throws a fit. When she throws her fit it gets Macie really upset. She covers her ears and starts crying. Dinner time is really fun around here lately. Last week Emma learned about going to bed without dinner. When I got her up in the morning her little tummy was growling. Needless to say, she scarfed down breakfast like she hadn't eaten in a week. Lesson learned? Not a chance!
She very opinionated, she knows what she wants, and she does not hesitate to let you know! My Mom calls this PAY BACK!!!
My mental state is still very up, and down. I have days where I want to dig a hole, climb in, and never come out. I also have days where I feel like I can conquer the world, and I want to scream it from the rooftop. I was filling out a survey for an autism website where I was trying to win an iPad for Macie. The second to last question on this survey was: "Would you take away your child's autism if you were able?" Without hesitation I said "heck yes I would.". The last question asked "would you take it away even if the qualities you love about your child went away?" I became stumped, and angry, and I felt like a horrible Mother for answering the way I did. I almost stopped right there and deleted this survey, but if I can't be honest with a stranger....how can I be honest with myself, or my family? After I thought about it I said "I love everything about my daughter, autism, or no autism.". I love her quirks, her personality, how she lights up when Daddy walks in the room, how excited she gets when her favorite cartoon comes on. I love how she doesn't judge, and accepts everyone and everything the same. She doesn't know how to lie, or discriminate. These are qualities that come with autism. Would I want to trade in the autism for those traits? No, not ideally. I love Macie no matter what, and that will never change. I would love to be able to teach her not to lie, discriminate, and to accept people as they are. If I took away the autism I would be able to teach her these things. By not taking away the autism she will be subjected to these things throughout her life. It breaks my heart that she is going to struggle her whole life in one way or another. She has many sensory issues, she needs routine, she doesn't speak, and we don't know if she ever will. She has quirks (rocking, spinning, flapping her arms) that are "socially unacceptable". EVERY. SINGLE. DAY I worry about her getting older and being bullied because she's "different". I worry about her not being able to make friends because of her social anxieties. I already see people looking at Macie differently. She's at that age where she should be able to speak, and not just grunt or tantrum. When you look at her, and she's calm, relaxed, happy- you would never know anything is wrong. When she wants something she gets upset because she can't tell us what it is that she wants. When she gets excited she flaps her arms. When she's on the playground, she watches the kids from a distance, she approaches them, flaps her arms and then backs away because she does not know what to do socially. THEN....add in the fact that she is a girl- there are so many people that don't understand that autism affects girls too. It's hard to be starred at when out in public. People tell you not to worry about what others think, but it's human nature for most to care. It's also human nature to care about someone judging you and/or your child when you have no control over it. It makes my mind race, and wonder how things are going to be years from now.
So.....moral of the story: I would take away the autism if I could. I realize all children have struggles, and I realize she would still have struggles but she wouldn't be "trapped" like she is now.
Wednesday, February 29, 2012
Look what Macie did!
I gave her a bunch of pieces of construction paper......
and she did this! I did not help her at all!!!! AWESOME!
and she did this! I did not help her at all!!!! AWESOME!
Tuesday, March 22, 2011
March 21st, 2011
is the day that Macie was diagnosed with Autism. My daughter is Autistic. It stings to type that. It's a step in the right direction though. I am still not able to say the words. It's not that I am denying it, or that I don't believe it.....it's just hard to form the words and say out loud.
I have so much more to talk about, and I will. I just need some time to process this. I will blog more about her diagnosis, and the process when I can organize my thoughts a bit better. I want to talk about it, and I know a lot of you have questions. We very much appreciate everyone reaching out to us yesterday. It's so hard to talk about right now without crying, and I hope that you all know that we just need some time to process this as a family.
This little purple folder has changed our lives forever. 
I know that Macie is still Macie. I know that we still love her the same, maybe even more if that's possible, but our lives feel like they've been turned upside down. I know things "could be worse", but in our eyes, at this moment, they can't be worse. I'm guessing that feeling this way is part of the "grieving" process.
Subscribe to:
Posts (Atom)