Today is our girl's 8th birthday. She was my butterball turkey born at 9lbs 2oz. I still remember having to only push twice for her to come out compared to the two hours I spent pushing out her older brother seventeen months before.
Most babies come out crying and screaming but not our little girl. She came out without a peep like she was sleeping. She was a perfect, happy baby. As long as I nursed her every 2 hours she'd happily sit in her bouncer or cradle just watching her brother play. My sister and brother-in-law nicknamed her "no maintenance baby." And it was true. She was every mom's dream who had an active seventeen month old.
She was my chubby baby and toddler with fat rolls everywhere. Now she's my petite, thin, eight year old girl. Who would have guessed? She's bright, compassionate, fiercely loyal, athletic, loving, with a keen sense of smell and hearing. She is fearfully and wonderfully made.
She was God's perfect gift in a difficult time. He knew I needed her. (You can read that story under She Saved Me, parts 1, 2, and 3)
Wednesday, April 23, 2014
Tuesday, April 22, 2014
Choosing to Homeschool
After her official diagnosis, we agreed to have her mainstreamed in a kindergarten class at our local public elementary school. I still did not feel comfortable teaching her at home. It was hard. She hated going to school. The transition into a new school, a new classroom, and a new teacher was difficult. The special education preschool class was held in a different school on the other side of town. She had an amazing teacher, aides, special education teacher, and therapists. And principal. There were days she'd refuse to walk into the building and her principal would scoop her up and carry her into her classroom. The adjustment process took a good three months. Everyone loved our girl and worked with her.
After the Christmas break, I kept being told, "she's wonderful in class but learns best one-on-one." Thankfully, she had an aide who could help with daily tasks during the day. When she'd arrive home after school, she needed down time in her room. I barely saw her until dinner. After dinner, she had to complete work which she didn't finish in school. Have I mentioned she hates math worksheets? Now our evenings involved crying and frustration. She'd go to bed and the sane thing happened the following day. She was happy at school but our home life was suffering and only getting worse by the day.
We made the plunge that summer. We notified the school that we intended to homeschool her the coming school year. We knew it would be a day by day decision. I wasn't willing to commit to much more.
And we haven't looked back. The thought does cross my mind on our really bad days but our relationship and her relationship with her dad and brothers is much better. And I can't sacrifice that. We do have rough mornings so days but it's only a few hours and then we are done. We can enjoy each other the rest of the day. She no longer needs two hours after school to unwind in her room from all the stimulation. There is no more fighting in the evenings (well, about school work anyway).
I don't regret sending her to school those two years but I sure am glad to have an even better relationship with her now. Homeschooling isn't for every child or every family but we've been blessed beyond measure.
After the Christmas break, I kept being told, "she's wonderful in class but learns best one-on-one." Thankfully, she had an aide who could help with daily tasks during the day. When she'd arrive home after school, she needed down time in her room. I barely saw her until dinner. After dinner, she had to complete work which she didn't finish in school. Have I mentioned she hates math worksheets? Now our evenings involved crying and frustration. She'd go to bed and the sane thing happened the following day. She was happy at school but our home life was suffering and only getting worse by the day.
We made the plunge that summer. We notified the school that we intended to homeschool her the coming school year. We knew it would be a day by day decision. I wasn't willing to commit to much more.
And we haven't looked back. The thought does cross my mind on our really bad days but our relationship and her relationship with her dad and brothers is much better. And I can't sacrifice that. We do have rough mornings so days but it's only a few hours and then we are done. We can enjoy each other the rest of the day. She no longer needs two hours after school to unwind in her room from all the stimulation. There is no more fighting in the evenings (well, about school work anyway).
I don't regret sending her to school those two years but I sure am glad to have an even better relationship with her now. Homeschooling isn't for every child or every family but we've been blessed beyond measure.
Saturday, April 19, 2014
Her Mooshka
A big part of therapy for children with any special needs is coping skills. Thankfully, our girl has had great coping skills for her anxiety. However, with a turn of a hat (or a forgotten doll in this case) things can go south quickly.
She has always had anxiety with crowds in confined spaces. For example, it took her two years to feel comfortable enough to enter the main church. She'd happily sit in the lobby (our Catholic Church in M'ville did not have a cry room) and pay attention or if I held her the entire time she go in willingly. But seeing that she has younger brothers, we were not always able to hold her all the time. Sometimes I had the baby and dad had the toddler or vice versa.
Around the age of six (she's almost 8), she finally felt comfortable walking in, sitting down, and staying quiet for the entire length of the mass. She only requested one thing - a doll or teddy bear. Seems simple enough, right? Well, dolls and teddy bears can be forgotten. Like this year on Good Friday.
We pulled into our parking space at church around 2:40pm for the 3pm service. She realized she had forgotten her Mooshka doll, Princess Paula. She begged to go back home and get her but we had no time. I knew it would be a disaster. Just the night before, she sat for 1.5 hours during the Holy Thursday Mass. Well behaved and attentive the whole time with Princess Paula by her side.
My husband had to work but my parents sat with the older boys while I took the little boys in the cry room (our new church has a cry room and my 18 month old is currently in a phase of throwing hymnals). Louise came with me and I was hoping it would help. She refused to sit next to me. A meltdown was on the horizon. Thankfully two of the other families in the cry room we know through our homeschool group. I was a tad bit less embarrassed. She alternated between curling up in the fetal position and yelling at me about going home or at the baby beside her to leave her alone (all he was doing was looking at her). We avoided a full blown meltdown but I knew it wasn't over yet.
She wanted to kiss the wounds of Jesus during the veneration. She came with me and stood in line. But before I knew it, she ran out of the main church. I knew where she had gone - back to her seat to cry. She wanted to participate. She wanted to be included. She wanted to get past her anxiety. But she couldn't. We try to never push, just to encourage. But sometimes it is too much.
We got home and the tears and shaking and screaming and hitting began. All because Princess Paula was left behind. Things are usually better within an hour or so, but my mommy guilt is still lingering. Should I have just left? But what about my other children? Why, oh why, didn't I remember her doll?
It had almost been an entire year since her last church meltdown. Last time we forgot her pink teddy bear.
She has always had anxiety with crowds in confined spaces. For example, it took her two years to feel comfortable enough to enter the main church. She'd happily sit in the lobby (our Catholic Church in M'ville did not have a cry room) and pay attention or if I held her the entire time she go in willingly. But seeing that she has younger brothers, we were not always able to hold her all the time. Sometimes I had the baby and dad had the toddler or vice versa.
Around the age of six (she's almost 8), she finally felt comfortable walking in, sitting down, and staying quiet for the entire length of the mass. She only requested one thing - a doll or teddy bear. Seems simple enough, right? Well, dolls and teddy bears can be forgotten. Like this year on Good Friday.
We pulled into our parking space at church around 2:40pm for the 3pm service. She realized she had forgotten her Mooshka doll, Princess Paula. She begged to go back home and get her but we had no time. I knew it would be a disaster. Just the night before, she sat for 1.5 hours during the Holy Thursday Mass. Well behaved and attentive the whole time with Princess Paula by her side.
My husband had to work but my parents sat with the older boys while I took the little boys in the cry room (our new church has a cry room and my 18 month old is currently in a phase of throwing hymnals). Louise came with me and I was hoping it would help. She refused to sit next to me. A meltdown was on the horizon. Thankfully two of the other families in the cry room we know through our homeschool group. I was a tad bit less embarrassed. She alternated between curling up in the fetal position and yelling at me about going home or at the baby beside her to leave her alone (all he was doing was looking at her). We avoided a full blown meltdown but I knew it wasn't over yet.
She wanted to kiss the wounds of Jesus during the veneration. She came with me and stood in line. But before I knew it, she ran out of the main church. I knew where she had gone - back to her seat to cry. She wanted to participate. She wanted to be included. She wanted to get past her anxiety. But she couldn't. We try to never push, just to encourage. But sometimes it is too much.
We got home and the tears and shaking and screaming and hitting began. All because Princess Paula was left behind. Things are usually better within an hour or so, but my mommy guilt is still lingering. Should I have just left? But what about my other children? Why, oh why, didn't I remember her doll?
It had almost been an entire year since her last church meltdown. Last time we forgot her pink teddy bear.
Wednesday, February 26, 2014
Choose Your Words Wisely
Choose your words wisely.
This is one of the first pieces of advice I give parents of children with any sort of language (not articulation) delays or issues. Now if only I could remember it as often as I should.
Today she was arguing with her 4 year old brother. I told her to stop being ugly. Yup, that's what I said. Being ugly? Mean, rude, insensitive, right?
Well, to a literal 7 year old female who (once the words are in her head) can't process them the exact way I intended them, heard "you're ugly." And that's why I am in time-out. The mean mom who called her daughter ugly. I can explain to her until I am blue in the face what I exactly meant but she still heard, "mom thinks I'm ugly" in her intricate mind.
I am NOT looking forward to the teenage years. NOT.ONE.BIT. She's currently in her room crying her eyes out and sobbing, "mom says I'm ugly" and won't come out. Yup, mom of the year award right here!
Yes, I know. My blog is about finding the joy in autism. Well, some days it sucks. Yes, she is fearfully and wonderfully made. She's perfect, smart, unique, and loving. But sometimes it just sucks.
This is one of the first pieces of advice I give parents of children with any sort of language (not articulation) delays or issues. Now if only I could remember it as often as I should.
Today she was arguing with her 4 year old brother. I told her to stop being ugly. Yup, that's what I said. Being ugly? Mean, rude, insensitive, right?
Well, to a literal 7 year old female who (once the words are in her head) can't process them the exact way I intended them, heard "you're ugly." And that's why I am in time-out. The mean mom who called her daughter ugly. I can explain to her until I am blue in the face what I exactly meant but she still heard, "mom thinks I'm ugly" in her intricate mind.
I am NOT looking forward to the teenage years. NOT.ONE.BIT. She's currently in her room crying her eyes out and sobbing, "mom says I'm ugly" and won't come out. Yup, mom of the year award right here!
Yes, I know. My blog is about finding the joy in autism. Well, some days it sucks. Yes, she is fearfully and wonderfully made. She's perfect, smart, unique, and loving. But sometimes it just sucks.
Tuesday, February 18, 2014
Normal vs Typical
I knew it was too good to be true - my daughter playing a sport. The first 5 weeks, while they were not perfect, went much better than I expected. Back in January our daughter started playing soccer in an indoor facility which offers classes for homeschoolers during the day. I was planning on signing the boys up anyway and thought we'd give it a try.
Every Tuesday she'd get excited about going to soccer. Once there, I could see her becoming anxious. But Tuesday after Tuesday, she'd run out onto the field and I'd see her visibly get upset about losing a relay or the other team scoring a point. I'd occasionally hear her tell someone they had cheated (they really didn't, she just says things like that when frustrated). I even heard her fire the coach one morning. But she'd always tough it out and keep going. The other kids seemed okay as did the coaches. I was relieved each and every day we went. She was enjoying herself.
And then there was today. She was having an off morning but we had to go anyway. She went out on the field and within 5 minutes she came walking off the field followed by the coach. My heart stopped. I went into panic and defensive mode which is quickly followed by the "I'm so sorry mode." The coach explained that on a typical day she gets frustrated but today she just wanted to quit and go home. And for the first time she walked off the turf.
But then he said something that lifted my spirits. He said, "She is always welcome to come back. I am guessing she falls somewhere on the spectrum? We work with all children here. If she doesn't want to play or feels she can't, she has the freedom to sit out. But when she's ready to come back, tell her to come join us - we'll be here. Even typical children need a break."
He said TYPICAL. Not normal, not regular, but typical. I hate hearing that my daughter isn't normal because she is. Yes, her behaviors are not always typical of a child her age. While we did end up going home early, I went home with a smile. A smile because I knew she was welcomed back next week, and the next, and even the next. And that was huge for me especially because she had called him a stupid idiot.
Every Tuesday she'd get excited about going to soccer. Once there, I could see her becoming anxious. But Tuesday after Tuesday, she'd run out onto the field and I'd see her visibly get upset about losing a relay or the other team scoring a point. I'd occasionally hear her tell someone they had cheated (they really didn't, she just says things like that when frustrated). I even heard her fire the coach one morning. But she'd always tough it out and keep going. The other kids seemed okay as did the coaches. I was relieved each and every day we went. She was enjoying herself.
And then there was today. She was having an off morning but we had to go anyway. She went out on the field and within 5 minutes she came walking off the field followed by the coach. My heart stopped. I went into panic and defensive mode which is quickly followed by the "I'm so sorry mode." The coach explained that on a typical day she gets frustrated but today she just wanted to quit and go home. And for the first time she walked off the turf.
But then he said something that lifted my spirits. He said, "She is always welcome to come back. I am guessing she falls somewhere on the spectrum? We work with all children here. If she doesn't want to play or feels she can't, she has the freedom to sit out. But when she's ready to come back, tell her to come join us - we'll be here. Even typical children need a break."
He said TYPICAL. Not normal, not regular, but typical. I hate hearing that my daughter isn't normal because she is. Yes, her behaviors are not always typical of a child her age. While we did end up going home early, I went home with a smile. A smile because I knew she was welcomed back next week, and the next, and even the next. And that was huge for me especially because she had called him a stupid idiot.
Monday, February 17, 2014
An Apple a Day Keeps Anxiety Away
Our daughter has always loved apples. And by loved, I mean we had to teach her NOT to eat the core. And they need to be red.
For those of you who know me well, know I always have an apple (or two, or three) in my purse. Why? Because apples help calm her down. When she gets anxious, she always looks toward food. Thankfully, we noticed early on her tendencies for comfort food. And we quickly suggested an apple - not apple slices but a whole apple. Eating the apple helps calm her down. It truly is amazing.
Some days she'll just cradle the apple and hold on to it for hours. It really is important to find a calming mechanism for our anxious children. I'm just glad her comfort foods are healthy!
If she were in Eve's place, we would not have original sin. She would have consumed the apple herself and never offered it to Adam. (I am just joking, btw.)
Tuesday, February 11, 2014
The Official Diagnosis
While our daughter attended the Special Education Preschool, we had her evaluated by a nuero-developmental pediatrician to see what else could be done. We wanted her to be ready to start formally homeschooling in Kindergarten. The office was amazing and took their time working, playing, and evaluating our daughter over the course of a year. They remained in communication with the Preschool. Summer came and I thought we were seeing the light at the end of the tunnel. Our daughter didn't have autism, she just struggled with communication and speech therapy was fixing that.
But the July before Kindergarten, we got the diagnosis of Autism from the developmental pediatrician. They told us she had high-functioning Autism, otherwise known as Aspergers. She had a Central Auditory Processing Disorder (CAPD) which made reading and auditory comprehension difficult and the delay in potty training and other issues were due to a Sensory Processing Delay (SPD). Socially she was fine but her communication was delayed which made it difficult to make and keep friends. Add in scripting and an expressive language delay, and she fell on the Autism Spectrum.
I hated labeling our daughter. But we needed to know what was delayed/wrong so that we could help her communicate, help her learn. We agreed to enroll her in public school (which was not an easy decision) for Kindergarten. The special services department wanted to mainstream her which meant she'd be in a regular classroom but would be given an aide at certain times and situations. I felt like a failure. Our daughter was broken and I couldn't help her.
It was over the course of the next several months that the faculty and staff of her elementary school, helped us accept and understand her. I know I may sound like a horrible mother, but there was a time of denial and anger. A time of mourning. Mourning for all the expectations I had. Yes, she would be just fine. Yes, she'd have a bright future. But the way she sees the universe is quite different than the norm. The way she learns is different. The way she communicates is different.
It wasn't that she needed to be fixed, it was me. I had to stop comparing her to her peers, I had to stop expecting more out of her than she could handle. I had to love her for her. And that has been the easiest thing I have ever had to do. Loving her has made me a better person. Letting go of my prejudices and expectations and just living with her and loving her has been the best thing I have ever done. I don't wish this on anyone I know, but I stopped looking at it as a hindrance or a set-back and started seeing it as an opportunity.
She completed Kindergarten that year and then our homeschooling journey began.
But the July before Kindergarten, we got the diagnosis of Autism from the developmental pediatrician. They told us she had high-functioning Autism, otherwise known as Aspergers. She had a Central Auditory Processing Disorder (CAPD) which made reading and auditory comprehension difficult and the delay in potty training and other issues were due to a Sensory Processing Delay (SPD). Socially she was fine but her communication was delayed which made it difficult to make and keep friends. Add in scripting and an expressive language delay, and she fell on the Autism Spectrum.
I hated labeling our daughter. But we needed to know what was delayed/wrong so that we could help her communicate, help her learn. We agreed to enroll her in public school (which was not an easy decision) for Kindergarten. The special services department wanted to mainstream her which meant she'd be in a regular classroom but would be given an aide at certain times and situations. I felt like a failure. Our daughter was broken and I couldn't help her.
It was over the course of the next several months that the faculty and staff of her elementary school, helped us accept and understand her. I know I may sound like a horrible mother, but there was a time of denial and anger. A time of mourning. Mourning for all the expectations I had. Yes, she would be just fine. Yes, she'd have a bright future. But the way she sees the universe is quite different than the norm. The way she learns is different. The way she communicates is different.
It wasn't that she needed to be fixed, it was me. I had to stop comparing her to her peers, I had to stop expecting more out of her than she could handle. I had to love her for her. And that has been the easiest thing I have ever had to do. Loving her has made me a better person. Letting go of my prejudices and expectations and just living with her and loving her has been the best thing I have ever done. I don't wish this on anyone I know, but I stopped looking at it as a hindrance or a set-back and started seeing it as an opportunity.
She completed Kindergarten that year and then our homeschooling journey began.
Getting The Help She Needed
Our girl was the best baby and toddler. When she turned 3, we got the feeling her speech was delayed. Her articulation was amazing. She started talking at 15 months and was up-to-date with vocabulary and sentence structure at age 3. But something just wasn't right. She could follow simple commands like - get your shoes or sit down. But when it came to questions and answers it became difficult. At first, there was no response, just a blank stare. The pediatrician told us to wait. I wish we hadn't.
Closer to age 4, we grew more concerned. Her behavior had always been good, however, "What's your name?" would be answered with "I'm three." and "What's your age?" answered with, "No thank you." We were confused. The pediatrician told us she was being defiant. Friends told us to spank it out of her. We were lost. Our little girl was not communicating with us. She would relate her basic needs and wants but that was it. What was going on in her head? I yearned to know what she was feeling, what she was thinking. When she cried she couldn't tell us what was wrong. She'd just shut down. I knew she wasn't just being defiant.
What was going to be our next step? I sobbed and sobbed in the pediatrician's office and begged for a referral. I finally got it. I felt like I was losing my little girl. Yes, she could talk but so much was going on in her little head that I felt like I was missing her - missing her take on life. She has always been a joyful, loving, and happy child. I felt disconnected from my daughter. I wanted to know what she thought, what she felt, what she was daydreaming about. When she'd look at a bird flying by she'd have such amazement in her eyes and her smile was huge. But there was no conversation, no telling me what she saw or why she was so amazed by it. I felt locked out. She'd happily play by herself. She had no friends. There was little to no communication with other children her age, older, or younger. But she was happy and content.
We decided to do her evaluations through the school system. Even though we were homeschooling her older brother, our insurance did not cover evaluations. The school system was wonderful and quickly made us feel at home. She was accessed by every sort of therapist you could imagine. In the end they told us she had a speech-language impairment and was developmentally delayed. Her receptive and expressive language was delayed. She could not communicate well and did not play or talk with other children. She was 4 and was not potty trained. Her motor skills were also delayed. She could not even hold a pencil, throw an object, or catch a ball. They recommended enrolling her in their special education preschool. We were hesitant and felt lost and alone. We met with the teacher and quickly felt at peace. We will call her Mrs. Pencil. She was amazing.
Over the year that our girl was there, she quickly caught up in her development. She received speech therapy and they helped her with her communication. She blossomed so much that year. She was finally able to answer simple questions correctly. After intensive therapy, she could also follow step by step directions. She turned 5 that spring and still was not potty trained. They thought she may have a slight sensory processing disorder. The more she communicated, the more issues seemed to arise. She was scripting. She seemed confused when spoken to. She could not hold a back and forth conversation. Her social skills seemed odd. And then the word AUTISM was presented to us. My husband and I always thought of severely autistic children whenever we heard the term AUTISM. Not our girl. She walked, talked, and was happy-go-lucky. She just needed to be fixed. Autism? Now that was scary. I just wanted her fixed. This was suppose to be short term, not life long. We were devastated. And of course they must be wrong.
Closer to age 4, we grew more concerned. Her behavior had always been good, however, "What's your name?" would be answered with "I'm three." and "What's your age?" answered with, "No thank you." We were confused. The pediatrician told us she was being defiant. Friends told us to spank it out of her. We were lost. Our little girl was not communicating with us. She would relate her basic needs and wants but that was it. What was going on in her head? I yearned to know what she was feeling, what she was thinking. When she cried she couldn't tell us what was wrong. She'd just shut down. I knew she wasn't just being defiant.
What was going to be our next step? I sobbed and sobbed in the pediatrician's office and begged for a referral. I finally got it. I felt like I was losing my little girl. Yes, she could talk but so much was going on in her little head that I felt like I was missing her - missing her take on life. She has always been a joyful, loving, and happy child. I felt disconnected from my daughter. I wanted to know what she thought, what she felt, what she was daydreaming about. When she'd look at a bird flying by she'd have such amazement in her eyes and her smile was huge. But there was no conversation, no telling me what she saw or why she was so amazed by it. I felt locked out. She'd happily play by herself. She had no friends. There was little to no communication with other children her age, older, or younger. But she was happy and content.
We decided to do her evaluations through the school system. Even though we were homeschooling her older brother, our insurance did not cover evaluations. The school system was wonderful and quickly made us feel at home. She was accessed by every sort of therapist you could imagine. In the end they told us she had a speech-language impairment and was developmentally delayed. Her receptive and expressive language was delayed. She could not communicate well and did not play or talk with other children. She was 4 and was not potty trained. Her motor skills were also delayed. She could not even hold a pencil, throw an object, or catch a ball. They recommended enrolling her in their special education preschool. We were hesitant and felt lost and alone. We met with the teacher and quickly felt at peace. We will call her Mrs. Pencil. She was amazing.
Over the year that our girl was there, she quickly caught up in her development. She received speech therapy and they helped her with her communication. She blossomed so much that year. She was finally able to answer simple questions correctly. After intensive therapy, she could also follow step by step directions. She turned 5 that spring and still was not potty trained. They thought she may have a slight sensory processing disorder. The more she communicated, the more issues seemed to arise. She was scripting. She seemed confused when spoken to. She could not hold a back and forth conversation. Her social skills seemed odd. And then the word AUTISM was presented to us. My husband and I always thought of severely autistic children whenever we heard the term AUTISM. Not our girl. She walked, talked, and was happy-go-lucky. She just needed to be fixed. Autism? Now that was scary. I just wanted her fixed. This was suppose to be short term, not life long. We were devastated. And of course they must be wrong.
Monday, February 10, 2014
Finding The Balance
Having a special needs child, whether severe or mild, in a largish family means finding a balance. Does my daughter who has anxiety, sensory, and communication/social difficulties come with us and we risk a meltdown or do we stay home and her four brothers miss out on things? It really is an on-going battle.
I want the best for each one of my kids but being in a family with five kids means sacrifices. Sacrifices on my part, sacrifices on her part, and sacrifices on my other kids' parts. I would love to be the picture perfect family. Go anywhere, do anything, whenever we want, and whenever we want - but that's not us. Some days we just have to stay home. Some days we go out and my daughter has a meltdown. She shuts down, curls up in a ball, screams and hits me, cries, or she screams and yells at your kid and I apologize profusely. But more often than not we seem to be that regular family. We go out and everyone tells me they don't understand why we skipped that baseball game because she's just fine - there's nothing wrong with her. I just don't always know when it will happen.
We've spent a great deal of time figuring out the triggers - situations which just aren't a good fit for our girl. However, you can't always predict what will happen, what someone might say or do. But when someone else needs or wants to go somewhere or do something that I have a feeling will offset my daughter, I am back at square one. Who comes first? Our son or our daughter? It really is a never ending battle.
There are days that I wish we had known at birth that this is who she would be. Then I wonder if we would have stopped having children so we could better care for her. We have only had one child since things got difficult at age four. Would we go back and do things differently? I have no clue. But I do know that her neuro-developmental pediatrician has told me repeatedly that having siblings has been the BEST thing for her. And I agree.
She has brought so much joy to each one of our lives. And while I am sure she frustrates them, they will always be there for her. When we are gone, they will still be here. I really don't know what her future holds. There is no reason to think she won't have a great and bright future. But for right now, we take it one day at a time. And I rest assured knowing she will always have them.
Disclaimer: I am not an expert on Autism Spectrum Disorders or Sensory Processing Disorders or Childhood Anxiety. This blog is our journey, our story, our experiences. All children on the Spectrum are unique and each and every family is different.
I want the best for each one of my kids but being in a family with five kids means sacrifices. Sacrifices on my part, sacrifices on her part, and sacrifices on my other kids' parts. I would love to be the picture perfect family. Go anywhere, do anything, whenever we want, and whenever we want - but that's not us. Some days we just have to stay home. Some days we go out and my daughter has a meltdown. She shuts down, curls up in a ball, screams and hits me, cries, or she screams and yells at your kid and I apologize profusely. But more often than not we seem to be that regular family. We go out and everyone tells me they don't understand why we skipped that baseball game because she's just fine - there's nothing wrong with her. I just don't always know when it will happen.
We've spent a great deal of time figuring out the triggers - situations which just aren't a good fit for our girl. However, you can't always predict what will happen, what someone might say or do. But when someone else needs or wants to go somewhere or do something that I have a feeling will offset my daughter, I am back at square one. Who comes first? Our son or our daughter? It really is a never ending battle.
There are days that I wish we had known at birth that this is who she would be. Then I wonder if we would have stopped having children so we could better care for her. We have only had one child since things got difficult at age four. Would we go back and do things differently? I have no clue. But I do know that her neuro-developmental pediatrician has told me repeatedly that having siblings has been the BEST thing for her. And I agree.
She has brought so much joy to each one of our lives. And while I am sure she frustrates them, they will always be there for her. When we are gone, they will still be here. I really don't know what her future holds. There is no reason to think she won't have a great and bright future. But for right now, we take it one day at a time. And I rest assured knowing she will always have them.
Disclaimer: I am not an expert on Autism Spectrum Disorders or Sensory Processing Disorders or Childhood Anxiety. This blog is our journey, our story, our experiences. All children on the Spectrum are unique and each and every family is different.
Thursday, February 6, 2014
Handwriting With Tears
When we first started homeschooling our daughter who is on the Autism Spectrum (ASD), we researched and researched handwriting curricula. Her fine motor skills were still a bit delayed but she was quickly catching up. We chose Handwriting Without Tears. The curriculum was developed by an occupational therapist which integrates both hands-on activities and worksheets for handwriting practice. I quickly fell in love with it! Our daughter, however, did not. I wasn't sure why. It was both engaging and simple. The directions were clear-cut and the pages were fun. Why, oh why, was my daughter crying each and every time we took out the handwriting books and activities? If this magical curriculum wouldn't work, what would? I kept asking her, "Why are you crying?" and all I'd get in reply was more tears. After two weeks of tears, I packed up the curriculum and put it away. Handwriting would have to take a backseat to her other subjects. With all the handwriting drama, her other subjects were being ignored.
Two weeks past and I brought out the handwriting books and tablet and asked my daughter it point to what made her cry. I figured after a two week break she would not be emotional about it. She pointed to the front of the book and said, "Oh, silly me! I thought it said Handwriting WITH Tears not without."
And then I cried.
Our daughter has always been very literal and making the slightest reading mistake can lead to trouble.
Two weeks past and I brought out the handwriting books and tablet and asked my daughter it point to what made her cry. I figured after a two week break she would not be emotional about it. She pointed to the front of the book and said, "Oh, silly me! I thought it said Handwriting WITH Tears not without."
And then I cried.
Our daughter has always been very literal and making the slightest reading mistake can lead to trouble.
Wednesday, February 5, 2014
She Saved Me, Part 3
I made it to 12 weeks. My doctor called it a miracle. I just wanted it to end. The pain, the court hearings, the unknown. In my mind it would have been easier to have miscarried that day. Then I wouldn't have to eat to nourish a life I was just going to lose. I felt selfish for wanting it to happen. In my mind I had no other reason to live. Once I miscarried, I'd make my plan. But I never did miscarry. I made it to 16 weeks and then 20. The whole time I was angry I was still pregnant. At this point there was no danger of miscarriage. Everything sounded and looked great. I was miserable. I wanted out. I had spiraled into a deep depression that I hid from my husband and my entire family. I was merely walking through the motions. Our 20 week ultrasound came.
And then I saw her tiny, precious face. She saved me that day. She had kept me alive this long. She gave me strength to go on, strength to seek help, strength to care for our little family. Strength to seek God's forgiveness. I would never be the same again. She was our little miracle. She saved me.
(Side notes: Our car insurance company was able to persuade the family of the deceased to not sue us but to take a hefty settlement from them instead. We hired an amazing defense attorney and after many hours of community service, my husband's record was expunged. Speed nor alcohol were reasons in the accident. The young man was not wearing a seatbelt.)
And then I saw her tiny, precious face. She saved me that day. She had kept me alive this long. She gave me strength to go on, strength to seek help, strength to care for our little family. Strength to seek God's forgiveness. I would never be the same again. She was our little miracle. She saved me.
(Side notes: Our car insurance company was able to persuade the family of the deceased to not sue us but to take a hefty settlement from them instead. We hired an amazing defense attorney and after many hours of community service, my husband's record was expunged. Speed nor alcohol were reasons in the accident. The young man was not wearing a seatbelt.)
Tuesday, February 4, 2014
She Saved Me, Part 2
My husband had been flown to a major hospital and was undergoing surgery to repair his shattered knee and severely broken femur. (Our son had not a scratch on him and from that day on, I became a carseat advocate.) I had been sitting next to him in the backseat of the car and while the seatbelt had protected me, it had also done damage. It had dug deeply into my lower abdomen and the doctor believed it had done enough damage and trauma to cause a miscarriage. I spent four days in the hospital before I was cleared to go home. I was scared and I still had not seen my husband.
The next couple of days were overwhelming. In North Carolina, they have some strange and out-of-date traffic laws. Even though we were not at fault for the accident, it was our breaks that had gone out, our car that had lost control on the slippery roads, our car that had hit another car, and our car that caused the death of a young man. Someone had to be charged and that someone was my husband.
He would need to learn to walk again and I was waiting to miscarry our new baby. I was a mess. And we were about to be sued. My husband was just about to start his third and final year of law school. I felt overwhelmed. I had hit the lowest point in my life. I didn't want to eat, drink, or even move. Depression quickly set in. I had lost my will to live.
To be continued.
The next couple of days were overwhelming. In North Carolina, they have some strange and out-of-date traffic laws. Even though we were not at fault for the accident, it was our breaks that had gone out, our car that had lost control on the slippery roads, our car that had hit another car, and our car that caused the death of a young man. Someone had to be charged and that someone was my husband.
He would need to learn to walk again and I was waiting to miscarry our new baby. I was a mess. And we were about to be sued. My husband was just about to start his third and final year of law school. I felt overwhelmed. I had hit the lowest point in my life. I didn't want to eat, drink, or even move. Depression quickly set in. I had lost my will to live.
To be continued.
She Saved Me
I apologize to anyone who has already heard this story. And I apologize to our families for making them re-live that horrible day.
But our girl's story begins with a bang. Not the kind of bang you want to hear, but a bang nonetheless. It all began when we were told we would lose her.
On August 7, 2005, my husband, myself, and our 9 month old son were traveling to the Outer Banks for our very first family vacation. And then it happened. All I really remember is the spinning, the smell of sulfur, and someone yelling and pulling me from our vehicle. All I could see was smoke. Where was my son? Where was my husband?
I was in and out of consciousness as they sped to the hospital. I could hear our son crying and all I was told was my husband was taken to another hospital and they were trying to find out his status. Was he okay? What was wrong? Why didn't he come here? Was he still alive?
When we arrived at the hospital, the nurse came in and told me my blood work had come back positive so they could not do a CAT scan. Positive for what? All I remember is the nurse holding my hand and telling me I might lose the baby. What baby? Since when was I even pregnant? I was strapped down, in a neck brace, staring up at the bright lights in the ER, and I cried. I cried for my husband. I cried for my son. I cried for the baby I thought I'd never meet.
To be continued.
But our girl's story begins with a bang. Not the kind of bang you want to hear, but a bang nonetheless. It all began when we were told we would lose her.
On August 7, 2005, my husband, myself, and our 9 month old son were traveling to the Outer Banks for our very first family vacation. And then it happened. All I really remember is the spinning, the smell of sulfur, and someone yelling and pulling me from our vehicle. All I could see was smoke. Where was my son? Where was my husband?
I was in and out of consciousness as they sped to the hospital. I could hear our son crying and all I was told was my husband was taken to another hospital and they were trying to find out his status. Was he okay? What was wrong? Why didn't he come here? Was he still alive?
When we arrived at the hospital, the nurse came in and told me my blood work had come back positive so they could not do a CAT scan. Positive for what? All I remember is the nurse holding my hand and telling me I might lose the baby. What baby? Since when was I even pregnant? I was strapped down, in a neck brace, staring up at the bright lights in the ER, and I cried. I cried for my husband. I cried for my son. I cried for the baby I thought I'd never meet.
To be continued.
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