Thursday, February 26, 2009

Autism and Homeschooling: Why?

...this is a repost from my personal blog...but it seemed relevant here.

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. Tina Cruz is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the editor of the Special Needs channel at Typeamom. Her personal blog can be found at Send Chocolate.

Friday, February 13, 2009

Something You Can Do...RIGHT NOW

For Valentines...just in time. Go and comment on Party Planning Professor... every comment will earn a donation for Autism Speaks. More importantly, we gain autism awareness. So, make my Valentines Day...go do it! Now. Thanks and love to you! T. Tina Cruz is a writer, wife and mother of three children. The two youngest children have high-functioning autism and the oldest has undiagnosed Asperger's Syndrome. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the editor of the Special Needs channe at Typeamom. Her personal blog can be found at Send Chocolate. Autism Sucks is her brainchild.

Thursday, February 12, 2009

An Interview with a special needs kids mom - Jenn Brockman

I am beginning a series of interviews with parent's of special needs kids. Lets start with me. I'll conduct my own interview so all of you can get to know me and my special needs kids! Q: What is your name & how many children do you have? A: Jenn Brockman - 2 girls, 7 and 11 Q: You have a special needs child. What is her/his name and what is the special need or diagnosis for that child? A: Actually, both my girls have issues, but don't we all? Nove, the 7 year old has Autism and possibly sensory integration disorder and oppositional defiance disorder too. Kat, my 11 year old, has ADHD. The doc said he'd never seen another kid in his practice rate so high overall on the Connor's scale. (2 of her teachers and we/parents filled out the rating form) Q: What are some of the issues you deal with on a daily basis from your child? (behavioral, physical symptoms or issues) A: Nove is stubborn, non communicative at times - she won't use words - often grunts, points, growls, when words would be used by anyone else. She plays with hot wheels, but play isn't a good word here. She actually just lines them up in different patterns. She is only about 75% potty trained. We still use pull ups on a regular basis. She spins, and spins and spins. There are so many other things, that it would take up a whole page all by itself. Kat, interrupts, can't get from one room to another without being distracted from her mission, talks loudly and often (all the time!). She wiggles and fidgets and moves all the time. Can't get organized, because she starts on one thing and gets distracted. Q: How old was your child when they were diagnosed? If no diagnosis yet, please skip and answer next question. A: Both girls were diagnosed within the last year thanks to family therapy. Q: Was it easy or difficult (to get) diagnosis? A: Well, we've been in therapy for a year and a half and we are just now getting to diagnosis. We tried to get the school to help with Kat for the last 3 years, but they kept brushing our concerns aside until her grades failed this year. Q: How did you feel upon getting the diagnosis? A: It was a relief to get Nove's diagnosis. I had questioned my sanity daily because of her behaviors, but I knew she was not ordinary. For Kat, I felt relief for her. Her self confidence had failed so badly that she beat herself up both literally and figuratively daily. Q: Do you care for the child by yourself, or do you have a support system in place? Please tell the readers about your situation. (who provides care and in what way, for what reason) A: Right now, the support system consists of my Mom when she feels well, their Dad on weekends (we are divorced), our family therapist and the school. My mom has been a tremendous help since Kat was born, but she gets migraines and has had a bad bout for several months now, so I feel like I'm a single mom trying to deal with these two unruly children all by myself. Q: What obstacles (if any) did you face along the way & how did you overcome them? A: The main obstacle was the school. Last year we had a run in with a substitute teacher who claimed that Nove wet her pants on purpose when she was angry. Her home room teacher this year, while communicating and working well with her, may believe that Nove has bi polar disorder and so I'm not entirely sure how she is reacting to Nove. However, there have been some great bright spots along the way. The pre K teacher was the one who initially helped us determine that there was, indeed, something going on with Nove and was so very patient and kind to her and to us. This year's new special education teacher seems to be much more level headed than the previous one and is communicating well with us ( I think). Q: Did you ever feel like it was a losing battle? A: Daily! Nove doesn't get up easily in the morning. She hits, she gets frustrated easily and gives up quick, which frustrated me even more. I feel doomed to be her caretaker for the rest of my life which is not something I signed up for so it feels at times like a life sentence. Q: What quality/qualities (i.e., tenacity, discipline, time management) do you think are necessary for a mom of a special needs child. Q: Which ones do you think it brings out in parents of special needs children? A: Yep, all those listed. Patience, (which I have little of), empathy, compassion and strength. Q: What one thing (book, website, coach, therapist, drug, tool, blog, service, etc) was VERY INSTRUMENTAL or inspirational to you? A: Can't pick just one! George, our family therapist. His humor has helped me get through many frustrations. I take things too seriously more often than not and he has shown me that I don't have to. Temple Grandin is inspiring. She is an adult with autism. Had it before autism was freely diagnosed and actually works and does presentations in the grown up real world. Q: What resources do you still/currently use to help you in your care for your child? A: Therapy. Even though there isn't much to help Nove with in our family therapy, it keeps me sane. Keeps me from giving up and giving in to her and to the social expectancy. Twitter. I've found many other parents of special needs kids there and have been able to share and get comfort. Q: What do you do to keep sane? (scrapbooking, running, reading, baths) A: I used to be a dancer. (belly danc) but the car accident ended that, so now, I read the forums and run my business. The weekends are probably the best for me. I get to spend a couple days with out the girls and with my boyfriend at his house watching crappy TV reality shows and just not giving a crap about the rest of the world. It took me a while to learn how to do that though. Q: I met you through a business networking connection. What business are you in? A: I'm in direct sales, beauty and fashion. Q: What is the name of your company and when did you start it? A: I own 2, along with special needs kids talk radio. My baby is Painted Laydies Mineral Makeup which I created from the ground up. I formulate, create, market, and everything else. The second is Mama Bags where I sell fun and unique handbags and accessories. Q: What was the inspiration behind your company/business? A: Well, Painted Laydies began out of a need for products that didn't make my skin go crazy. I had a background in beauty and art so the color theory and creation part of making the products was easy and a lot of fun. I hoped and still do, that it will actually provide a way to make a living and still be able to care for my kids without worrying about losing a job because I have to go rescue one of them from school. Q: What is your favorite quote/movie/song? A:The Pricess Bride - "as you wish" Some commercial - "what the french, toast?" Q: What advice would you give to other moms of special needs kids? A: Reach out to communities and other parents. The best support comes from someone who can identify with what you are going through. I thought I was alone in what I dealt with in regard to my kids. The fact is, there are millions of us! Q: How can my readers connect with you? (Website, Twitter, blog, etc.) A: I'm always looking for new stories and people to connect with on http://specialneedskidstalkradio.com My other businesses can be found here; http://www.underavirgomoon.com Twitter name is Jenn Brockman

Tuesday, February 10, 2009

In The Beginning

I was wearing a long denim wraparound skirt and a red v-neck t-shirt. Evan was dressed in plaid shorts from OshKosh B'gosh and a matching shirt. My mom was wearing a crisp white linen blouse and matching black linen slacks. The creases on purposes, no wrinkles on accident. This was Evan's first appointment with the child neurologist. The first of what would be many, with my mother by my side. We sat in Dr. I's office, after awhile we stopped trying to keep Evan from turning the lights on and off...Dr. I. said to just let him be. I don't remember everything that was said during the appointment, the exact things that we talked about. What specific examples we gave, the medical history of my son that seemed to hate me. Couldn't stand my voice or touch. Flipped switches for hours, constant repetition. Objects like fans and vacuum cleaners held in such high regard, they were given goodnight kisses instead of me. I didn't cry when Dr. I. told us it was autism. My mom did. I just kept focusing on my skirt. I kept thinking that if I could look just one tiny bit as beautiful as my mom then I wouldn't drop my basket. But there was my mom crying in the hospital parking lot, in her outfit from Talbot's probably, and there I was in my skirt from Target not shedding a tear. Later that night my parents watched Evan, as they often did. I went out with my girlfriends to the bars. Wearing that same skirt. Only when the safety pin that held the wraparound together came undone and poked me, did I begin to cry. This post was originally published August 25, 2008 at www.thehousethatoshbuilt.com Osh is the mother of Evan, soon to be 15, and in his own words, Autastic...Autistic+Fantastic. She also has five cats. You can judge her sanity at www.thehousethatoshbuilt.com for yourself.

Monday, February 9, 2009

The Dirty Secret Schools Don't Want You To Know

Over the years, I have witnessed an exodus of sorts when it comes to the education of friends' children. More and more parents of children with autism and Asperger's Syndrome are choosing to homeschool. We are the well-kept dirty little secret that your school district doesn't want you to know: often our children can be better served at home than in the school system.

I would have never said such six years ago. I was a died-in-the-wool PTA, room mom, get into the system and change it, agent. But one horrific year with my son's classroom (through no fault of the teacher) and I became a true believer. I figured I couldn't do a worse job than the school, and I might even be an improvement. Besides, my son hated school, to the point I was literally dragging him there. Something had to give.

And now? I homeschool all three of my children, and this is our 5th year. Two have been diagnosed with high functioning autism, they are 7 and 10 respectively. My oldest is going on 15, and though she has never been diagnosed, she has many of the deficits of Asperger's, and is also academically gifted. Her father is a computer engineer, and is most likely also on the Spectrum. (he was never tested, but off the record, our psychologist said so) So, you do the math...

In any case, bringing my children home has worked out wonderfully for us. Homeschooling has allowed me to tailor each program according to what works for each child. My 14 yr old, who went to school for 6 years benefits from a very academic program. She enjoys the structure and it works. My middle guy, at 10, is the one I walk the line with. He isn't unschooled, but his academic structure would, at first glance, seem more relaxed. It is still very scheduled, however. But we benefit from frequent breaks, sensory diet and multisensory approaches. I can choose activities that he enjoys, and we keep work periods short and focused. He can take a break for pogo stick or OT work, as needed. My littlest one, at 7, is the one that learns best through games and Mom Time. She needs one-on-one (as does my son) that she wouldn't get in a classroom. She often has to be taught a concept repeatedly before she gets it.

My middle guy is also dyslexic, which makes it interesting, and I am thinking my littlest may be, as well.

As for socialization...which is a joke anyway... but still. We have found with regular play dates, activities and park outings, my children do just fine. There is more time for preferred subjects (my 14 year old taught herself to both play the piano and knit, because she had more time than if she was traditionally schooled.) We have more time (and funds) for field trips and activities. While other kids are sitting in a classroom, mine are out learning in the world.

There is a park day we attend and have for years. The attendance is large, with many different ages and multiple abilities. There are several kids from all ages that are on the spectrum in varying degrees. It is a very welcoming group. Truly, it was the best decision we ever made for our family.

When my son ended 1st grade, he barely read, was behind in math, his writing was still reversals (though he is left handed, so that made it worse). I would literally dress him like a doll and drag him, kicking, to the public school. He would sit under the teacher's desk, or make games. His aide was useless, only serving to keep him from eloping from the classroom. His work was all sent home. I was already homeschooling, and my son was in the school system!

He is now in the 5th grade, and reads at grade level. His math is also at grade level, or just below. He is above in Science, History, Geography. His writing and penmanship has improved 10 fold. and most importantly, he loves to learn. I have found that learning is a broad term for what we do every day. Mythbusters is learning and exploring Science. Going to the Arboretum is a chance to discuss the environment and botany, as well as the food chain. In fact, every activity has inherent learning in it...you just have to find it.

The most important thing to remember about homeschooling? It isn't something you do. It's something you live. And there really is no wrong way to do it. You can, and your child can... and if it doesn't work, keep tweaking. Also, what your state standards may find important, you may find doesn't mesh with your family. That's ok. I have found that as we go, my kids pick up information I didn't formally teach. And the one thing I want to equip my children with? The ability to find information.

The freedom I have found, as well as the free time away from IEPs, discipline meetings and just general headache is now energy I can pour into helping my son love learning. Less time is spent arguing over what the schools think he needs and more time is given to what he actually needs. We have personalized his goals, and we make sure he reaches them. There is no fighting with autism experts who insist my son is meeting goals that are either too broad, too easy or just plain wrong. I am in control. And my children are the better for it.

That, to me, is success.

T. is a writer, wife and mother of three children, two who have high-functioning autism, one who has undiagnosed Aspergers. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents in support as a privilege.

She is the Special Needs Editor at typeamom and her own site, Send Chocolate reflects her passion for her children and autism. The Autism Sucks blog is her brainchild.

Friday, February 6, 2009

How Invisible Disabilities Are Not Always Accommodated

"You can just wait like everyone else" a sour faced receptionist shot at me. "You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is." No. She. Didn't. She didn't just go there. It's 7:05 am at a Lab Corp facility where I need to get my daughter's blood drawn to check her med levels. The tiny, sterile waiting area is wall to wall with people, spilling out into the halls. The wait is likely close to an hour. My child, very severe on the autistic spectrum, does not handle crowds, cramped spaces, uncertainty, waiting, and other general realities of life very well. As she is utterly non-verbal, she has no other way to communicate her discomfort other than behavioral meltdown. I'm completely in a panic and feel the hundred eyes in the waiting room on me and my "different" child. People shift nervously in their seats as my daughter jumps, squeals, moans, drools, hits, and otherwise does not act like a typical citizen in a typical waiting room on a typical day. I feel like I have to apologize for being out in public. For corrupting their "normal" lives with the abnormality of our presence. When I realize the length of the wait, the conditions of the waiting area, and my child's difficulty with such sensory overload, I start to deliberate whether or not I should ask the staff people if any accommodations can be made for my daughter. She also has Emla Cream (a topical numbing agent) on her arms to prevent pain upon blood draw that would wear off in about 30 minutes. Without her arms numb, she will kick, spit, bite, freak out, and become traumatized by yet another medical procedure that she has endured over her entire lifetime. Flushed, feeling conspicuous, fragile, and anxious I go to the front desk seeking assistance, empathy, and yes, I suppose a little special treatment. What I get is the quote with which I opened this post from "Sally," a phlebotomist manning the front desk. It's interesting to me that there are people in this world, although certainly few and far in between, who look upon parents of special children in this way. That we are using our child's disability as an excuse or a rationale for a free handout, special treatment, attention, or accolade. Unfortunately, this poisonous attitude seems to be reserved for the disabilities that are less physical and perhaps less easily understood. When a child has ADHD, Conduct Disorder, Intermittent Explosive Disorder, Autistic Spectrum Disorder, Tourette's, or a psychiatric diagnosis they sometimes are seen as having more control of their undesirable behavior than a child who physically appears different (as a child with Downs Syndrome, Multiple Sclerosis, etc). Often times the implication is that it is the remiss, lax parent who cannot "control" their child, and not the child's disorder that is at the root of the problem. Our society has certainly come a far way from the "Refrigerator Mother" theory of Autism, but at times like this, I see that not everyone is as enlightened as I might have assumed. Clearly Sally felt that any special treatment my daughter would receive was undeserving. In her words, her accusation, my daughter could "wait like any other child." No, you compassionless, ignorant shrew, that's the problem: She CANNOT wait like any other child. She is NOT any other child. She is not in control of herself. Her AUTISM is in control. Her brain is structurally different. She has chronic static encephalopathy, generalized seizure disorder, severe to profound cognitive impairments, sensory/nervous system deficits and Autism. She is disabled. She looks rather "normal," but she is disabled. My God, she eats her own sh*t for heaven's sake! She cannot "wait" in this overcrowded, fluorescently lit waiting room without making everyone's life a living hell. She is not spoiled. She is not poorly disciplined. She has Autism. Ever hear of it? She is 13 years old and she cannot dress herself, bathe herself, pee on the toilet, take care of her menses, buckle in her own seat belt, open a container, brush her hair, say "Mommy" or anything more than the 8 word approximations that comprise her vocabulary. The audacity of me to request a little special attention! I am so sorry. How dare I cash in on a no-wait pass at Disney or a little respite care through Division of Developmental Disabilities. What a heinous, self-serving mother I am! And, to expect a little help at a facility that provides patient care? I am so used to getting my ass kissed because of my child's special needs that it certainly makes living with Autism so rewarding! Boy I'm making out like a bandit, alright. I get to cut in line at Lab Corp, which certainly counterbalances the fact that I also get to clean up her almost daily fecal smears, worry about her running away, spend about a million dollars to take care of her the rest of her life, and manage every aspect of her self care. I get to stress about the severe seizure disorder that has landed her in the hospital numerous times starting at 4 months of age. A seizure disorder that could realistically be the death of her. Please forgive me for my selfish request. I am not worthy. She is not worthy. She's only autistic after all. She'll manage. We'll sit and wait like everyone else, because after all, we ARE like everyone else, aren't we?!? So, what's next Miss Sally? Will a person confined to a wheelchair have the audacity to ask for a ramp? Will a blind person have the presumption to ask for signs in Braille or permission to bring their seeing eye dog into the waiting room? Last time I checked, accommodations for disabilities was the law. Last time I checked, Autism was a disability. Autism does indeed suck, but there is one thing that sucks even more. The attitude of Sally and others like her. An attitude of ignorance and hurtfulness, wielded like a dagger; slashing at a wound that has already been hemorrhaging for years. A wound only a few ever bother to see. Alicia D. is the mother of 4 young children, her eldest is diagnosed with Autism. She is a Stay At Home Mom with a Doctorate Degree in Clinical Psychology, which is only useful if she's trying to be intimidating at an IEP meeting. Alicia is also a budding freelance writer and blogs about the mayhem of motherhood at Welcome To My Planet .

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