How Do I Explain It to Her?

She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?

Why do her cousins tease her for things she cannot control?

She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).

She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.

She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.

She's almost ten, and she doesn't understand. Why autism? Why her?

I can't explain it to her. I wish I could. I am in my forties.

And I still don't understand.

Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com

trivial...yet huge...why.

Shaking inside, walking around the house as a madwoman. Yelling at anything crossing my path, tonight...my poor dog. My big gentle giant seems to just be in the wrong place at the wrong time....again and again. Why...why cant my son tell me where it hurts, Why cant i get across to him that I'm only trying to help.

Why does this damned fever keep coming and going, and why doesn't he want me?? He wants daddy, and he's sure to let me know.

Shaking inside...pacing about...."why is the frigg'n air not working again?!" This then leads to....finding and picking out everything i HATE about my house, forgetting all the things i love about it. "You know what the problem is i bet...plumber told you to leave the vents open, you didn't" Of course i know its not my husbands fault its just part of the cycle, these events hurt everyone. Why....the hell does he still love me??

Does he?

Tonight....tonight is a bad night. My son needs to see a doctor and I cant take him. Three of us holding him down and still no exam could be preformed. He needs an exam badly. "ouch" grabbing various areas of his body...lately his genitals.

Tonight, i feel so lost.

I feel inadequate as mom.

I feel undeserving of love..

I feel undeserving of this rant. This is nothing....nothing to so many, yet tonight...for me, this is huge, and i don't get it..

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Please....scream louder

Well little Zachary has had a rough few weeks but the other day was a real woozie. I seriously thought his screaming and meltdowns couldn’t get any worse. It did. On our way home from school Friday I pulled out of the kiss n’ ride and he started crying about his seat belt not feeling right. Joshua who knows all to well when things “don’t feel right” tried fixing his belt. The screaming and crying got louder as he complained it was twisted. It wasn’t. But to a child on the spectrum it doesn’t matter if we don’t see it twisted. He feels it and can’t cope. Just before we got to our house Joshua adjusted it again. I park the car in the driveway and all hell breaks loose as he starts screaming for me to turn around and go back we have to start all over. He kicks the seat infront of his and gets hysterical when I tell him we can’t go back.

I will let you in on a secret. When Joshua was about the same age if I did not take the exact route home every day the same thing would occur and he would beg through his screaming and tears to please go back and start again because it wasn’t right. This was before I knew anything was wrong and felt as though I somehow did something to distress my own child that yes, I would actually turn around and start all over just so I wouldn’t have to deal with a two hour meltdown. Thankfully gas was cheaper then!

After about fifteen minutes of Zachary still in the car hitting me, screaming and refusing to let me take his seat belt off I finally got him into the house where he screamed, ripped up a picture he had done in school, and then ran out of the house screaming for me to take him back and start again. I brought him back in only to have a meltdown of swearing, throwing things, hitting me, scratching, jumping up and down and begging me to please take him back. Finally he was exusted after about an hour of this and started banging his head on the chair as he rocked back and forth with his blankie. My 6 year old daughter Arielle and 7 year old son Sebastian were happy he finally had stopped and came downstairs out of hiding.

It can be difficult some days - okay most days - but as my little Ryley continued to sleep through it all, and my other 4 sat around Zachary (not too close of course) to listen as I read Zaks library book “Franklin and the dark” I realized that I couldn’t have asked for 6 better children.

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Bet you didn't know you were a writer!

It's been a bit since we have posted, but we are still around. If you have experience with autism, consider writing here. All you need is your story. Email sendchocolatenow AT gmail DOT com Together, we can get through life with autism. Tina

Now we are condoning discrimination? oh, HELL no!

Sorry, I am crossposting this on all of my sites. I simply feel the issue is too important to ignore. Thanks!

You might remember earlier this year about the teacher from Port St. Lucie, FL who had her class vote on whether Alex Barton, a child with autism, could remain in her Kindergarten class. He was voted out, traumatized and refused to return to school. There was a great uproar and teacher Wendy Portillo was suspended without pay for a year with her tenure revoked.

The school board quietly reversed its decision this week..please read the rest here, and trust me, you need to read it.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. 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 Special Needs Editor at typeamom LA Special Needs Kids Examiner at Examiner.com and her own site, Send Chocolate reflects her passion for her children and autism. Autism Sucks is her brainchild.

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Coming Home

Today was the third meeting with our architect as we continue the initial stages of building our dream home. Interestingly, at this meeting there was cause to disclose my eldest daughter's special needs as we discussed the functionality of our house plans for our kids. At the end of our meeting, the architect shared with us that he too has a special child. It is always amazing to see the shift in relational dynamic that occurs when two people, almost strangers, share this one bit of information. Suddenly, doors open into each others' lives and mutual understanding and empathy flow forth. As a parent of a child with special needs I notice an unspoken camaraderie, or a "Club" so to speak, with other parents in similar situations. No matter what the diagnosis or functioning level of your respective children, there is that immediate bond when you hear another parent's story or see them struggling at a restaurant or store with a child that reminds you of your own. An instant understanding. A deep connection. It crosses oceans, creates bridges, connects continents, transcends dialect, race and creed. It is unspoken pain, unspoken love, unspoken relatedness. I wonder sometimes if we parents, as a result of not quite "fitting into the norm," are trying to find and/or create some kind of community within the larger society. A community where we don't have to explain ourselves, where our child isn't stared at or worse - NOT stared at (you know, when people too politely avert their eyes). As the mother of both a "non-typical" child and three "typical" children, I always have one foot in one planet and one in the other. Dual citizenship. I straddle the galaxy and it never ceases to amaze me how both close and far away these worlds are from each other. The ability to live 2 parallel lives poses challenges as well as offers great reward and a sense of balance to a once lopsided existence. My oldest, afflicted with serious seizures at 4 months of age and diagnosed with Autism and "Mental Retardation" at age 2, was my only child for 10 years. For a decade I was a Mom, but didn't feel like I could relate one bit to the mothers around me. My life was filled with Physical, Occupational, Speech Therapies, private and county intervention, music therapy, neurologists, endocrinologists, cranial sacral therapy, secretin infusions, DAN protocols, visits to specialists, travel to conferences, and thousands of hours logged onto the Internet researching and on my knees in prayer. I was not on Planet Typical... the planet of regular Mommies doing regular parenting things, but rather orbiting in its atmosphere, desperate yet fearful to land. It's interesting because I have met some of the most wonderful people in the line at Baja Fresh, in an ice cream parlor, or by visiting each other's blogs from hundreds of miles away. We have crossed paths and bonded through the gravitational pull that draws special needs parents toward each other. I think when we meet someone who travels our path, who prays our prayers, who picked up the pieces of our same shattered dreams, who rebuilt our same new dreams, who revelled in new joys, who feel our pride and rejoicing, who cry our tears, who live on our planet, we breathe a sigh of relief. The relief of not needing to explain ourselves or our child's different behavior, appearance, or needs. The relief of speaking our own language. The relief of not having to give explanations. The relief of being released from orbit, even if just for a little while, and feeling the warm soil of our Homeland. Alicia D. has essays to be featured in the upcoming issues of Today's Caregiver and Autism Spectrum Quarterly. She can be found blogging about raising her four girls, one with Autism, at Welcome To My Planet.

What's The Point of School?

The following is in response to a comment made on the last post regarding homeschooling for autistic kids. It refers to a comment from a special education teacher. Go read it, first. Califmom's response needed to be its own post.

Sorry to be petty here, but if the argument to send my child to school is being put forth by a teacher who has more grammar/spelling mistakes in his comment than content, I have a difficult time swallowing that pill.

However, I'm a bigger person than the product of my (formally schooled) environment. So, I'll bite.

What I read in Mr. Black's comment is that my son should attend a formal, school setting in order to experience poor treatment by his age mates and failed social situations, which will then require the support of a team of professionals.

This scenario is seen as superior to providing my child with social experiences outside the academic setting, where stress is lower, and success is higher, which then result in positive experiences in the building blocks of his social competence.

Underlying all of this is an assumption by Mr. Black that I, as the parent of the child, check my opinions at the door, trust the system, and let the professionals do their job.

Mr. Black, just so you know, we were not always homeschoolers. We didn't even choose this path, initially.

In fact, for over 7 years, my children attended an expensive, award-winning private school that touted its ability to address special needs.

My personal educational background is in child development and elementary education.

We did not arrive at our decision to homeschool because we had some idea that it would be a great way to exclude our child from the artificial construct we currently call our schools, an institution largely existent as a remnant of the Industrial Revolution and the requirement that we produce a society of factory workers with a similar world view--followers, non-thinkers, non-questioners.

We arrived at this decision via a difficult path, but we are beyond pleased with the results we see in our children. More, our family and friends are impressed with the change they see in our children.

You see, nowhere else are we grouped in such an artificial fashion as we are in a traditional school setting. Children are grouped by age, and often ability (or disability), and then expected to derive value from this socialization.

I have yet to find a workplace (the argument most put forth for a school-based education is to 'get a job') comprised of same-age coworkers. Have you?

Aside from prisons and psychiatric wards, nowhere else do we lock people in for the day and attempt to control their behavior. Seems odd that we expect only 1 of 3 of those scenarios to be appropriate for all members of our society.

I want more for my child, and I have the ability to provide it. Maybe it's not what everyone can provide their child. Maybe it's not the right thing for everyone, but it is what is meeting the needs of my children and our family. It's also the beauty of living somewhere that provides us this freedom.

If you really want to boggle your mind, Google unschooling. That's what we do. I'm guessing it'll make your head fall off, but maybe it will just open your mind.

Because of her son, califmom knows more than she wants to about Asperger and Tourette Syndromes. She doesn't think autism needs to be cured. She does think that autistic spectrum disorders are more likely orders--another way of being in this world. Visit her at califmom and califmom homeschools.

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.

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