PBS Kids Web Zone

There is a wonderful new play site online that my 5 year old absolutely loves. She cannot get enough play time with the new PBS kids new site. There is a monthly fee after 15 day trial. It’s similar to netflix cost.

I am going to have to sign up, because the curriculum advantage surpasses leapster and everything on the market. It is user friendly and even fun for students with language delays.

This site is fantastic, and 100% of the cost put into playing the games goes into the public television programing. That means more of the great shows my daughter loves and enjoys: Word Word, Super Why, Dinosaur Train, Word Girl, Curious George, and Clifford.

You can go to the main site at PBSKIDSPLAY.ORG

http://pbskidsplay.org/playnow/?CKH2222&btn=1

Autism – Self Injury

I found a pamphet buried deep within the ERIC (educational reseach archives) that was very informative.

I’ve noticed the latest round of Special needs advocates skirts this issue: Self injurious behaviors and aggression

We use warm and fuzzy words with Autism like: healing and cured

What about reality? What about making Autism family life understood?

I’ve decided there is nothing wrong with a two-sided approach to Autism. The “then” and “now” Autism Approach. (Copyright 2009 – ECalleiro)

There is pleanty of room for optimism (“then”), but it must have a foundation in intervention, diligence, research, (“now”).

Inform parents about the tough parts of Autism or other special needs with repetative behaviors.

Parents will not dislike you for explaining to them what is happening on a daily basis.

I was frustrated, and lost. I couldn’t understand my own daughter. I wanted help.

With repetative behaviors or self injury there can be suffering, bruises, pain, and sores. These are visable.

What is not visable, can be even more painful. There can be constant confusion and false feelings of failure.

I didn’t know how to help my daughter. My daughter needed me to learn her language.

I battled thoughts “Should I be strict with her outbursts, or should I be more loving towards her.”

Nothing really seemed to help her. I could not keep her from biting her arms or lashing out.

She pulled at her hair, bit holes in clothes.

She had very limited verbal communication at this stage, and it was tough to keep her from hurting me as well.

She head butted me, kicked at me, bit me, and herself to tell us something.

I couldn’t figure out this part of Autism. I broke down crying alot.

I hated this time of confusion.

My daughter hated this time of confusion.

We both didn’t understand each other.

It was the strangest thing to live in the same house, and not speak the same language, or understand each other at all.

I didn’t understand why therapist seem to think my daughter was ok, even though her arms were covered in her own bite marks, and her clothes were torn.

This link explains the questions parents have been and will continue to ask about our beautiful children who engage in self injury behavior.
(I hosted the file on my google documents)

https://docs.google.com/fileview?id=0B5J2NcsDv_1iNDhjNTY1MjQtOGNiYi00MGI4LTkyMzMtZDVjNzQxZGIzYWFk&hl=en

How we can understand and help our entire family? Follow up with your pediatrician, or other self-injury specialists to learn more about helping your child.

Moe’s Knows

This story represents the most horrific public display of frustration both for Lily and me.

To set up this story I must first apologize in advance for my own ignorance and impatience. I look back on this day of my life as an Autism mom and cringe.

It was evening, and for some scheduling reason or another Lily and I had not eaten as planned. We had deviated from our normal schedule. I had been lulled into thinking that Autism goes dormant.

Don’t ask me why, but Lily seemed so typical that day. She was completely indistinguishable from non-autistic children in stores. She had been the quiet and attentive one, and was completely compliant. She had a wonderful outing in several different stores, and I was celebrating our day spent out together.

I drove toward our final stop, dinner at a local Moe’s. It was a calm night, but there was a line inside. As I turned around to ask lily what she would like to eat, I noticed she was sleeping peacefully in her high back booster chair. She was so beautiful and calm.

Because I was so hungry at the moment, I thought that I could pull into the Moe’s parking space, scoop Lily out of the booster seat without waking her, and carry her peacefully inside to order. I was ordering carry out to eat at home.

It was a naive thought, and a unfounded one. I should have added up the total number of times that I had lifted Lily from her seat without waking her, and divided that by the number of times it was successful. I would have had my answer there, but I was too hungry to do the math.

A few seconds later, Lily was rubbing her eyes on my shoulder and mildly aware of the new environment inside Moe’s.

As the line stood stagnant as swamp water, Lily’s apprehension grew. It was as if I was holding a ticking time bomb in my arms. I didn’t want to step out of the line because we were only two people from the person taking food orders and the line had grown rapidly behind us. I decided we would need to eat there because Lily needed food to calm down. Her blood sugar would come back up, and she would probably be calm again.

Behind us in line a woman from my parent’s church greeted us.

I knew her from the Christmas plays that we had been a part of a few years before lily was born. It was nice to see a familiar face.

Just then, Lily became fully aware of the strange setting we were now in. She began to want to get down, or run away. She was crying a bit, but mainly being restless. She was anxious because she was tired and probably very hungry.

It was just about this time that the woman we knew got very close to Lily’s face. I tried to explain tactile defensive and Autism at just about the same time Lily hit the woman from church in the face.

It was the explosion that I had not anticipated. I was apologizing, and lily was losing it. She was hitting me in the face and biting me. She wanted to go to the bathroom. (I had not yet learned that “bathroom” was simply isolated quiet space away from the crowd.)

I took her to the bathroom. She continued crying and fussing as there were many people in the bathroom. We attempted to use the restroom, but the toilets looked different than our toilets at home, so she didn’t want to use them. (I also didn’t understand this.)

Lily was now mad, deprived of isolation, sleepy, hungry, and completely off schedule. I was still not thinking clearly. I tried to get her to pull it together. I scolded her. I may have even spanked her for hitting me and the lady from church in the face. I was hungry and stressed out. I didn’t want to leave without getting Lily food.

The woman from church let us back in line. We ordered the food as Lily railed on my arm and continued to want to leave to go to the restroom. Just after we received her free kids meal and started to sit down to eat, she threw it across the room toward another unsuspecting family. They ducked the flying burrito, and I felt rage building inside me.

I was frustrated that Lily threw the free food. I was tired. I was confused. I didn’t know how things could get any worse, but they did. Lily knocked over both our drinks onto the floor. It was utter chaos. I was about a second away from crawling under the table.

I was humiliated that I had brought this episoide on us. I knew that I have triggers lined up, but I still kept trying to fight with the impending storm that I had churned. I had placed all the perfect setting for this hurricane, but it still surprised me. I finally managed to get lily out to the car after a 2nd or 3rd trip to the bathroom. We were both crying.

We finally sat in silence in the car for about 5 minutes before I pulled the car out of our parking spot. I finally spotted a Taco Bell and pulled up to the drive thru. We sat quietly in my car eating our 79 cent cheese roll ups. It was really calm for a little while.

I think Lily spoke first. At some point she said “I’m sorry Mommy.”

I felt like crying again, and I told her that I was sorry too. Truth be told, I’m not sure that Lily had anything to apologize for, because despite her outburst I fueled the storm.

I learned a lot about our relationship that evening, and about our sense of normal. It will be different than other families, but it will still be similar at times. Lily responded very much like a non-Autistic child would when they are very hungry, tired, and off routine. It was just much more intense. I could see how I would need to help our future situations.

Planning ahead, and sticking to schedules isn’t just for Lily, it’s for all of us.

Flu Shot Autism Day

Individuals with Autism Spectrum disorders typically display difficulties with social cues and interaction. They also may appear clumsy or delayed in fine and gross motor skills. These individuals typically obsess with small personal rituals, routines, or habits.

Working with individuals who have Autism and having a child who has Autism is much more complex than this answer above. Autism is a brain disorder that captures environmental processing and takes social skills hostage.

I walked out of the clinic at Wallgreens yesterday with my 5 year old daughter Lily, who has autism. She has major processing delays, which we believe originate in her brain.

These processing delays make her environment difficult to interpret. By the time she understood that the doctor needed to take her temperature to be able to proceed with the flu shot, it was 10 minutes after the appointment was over. (We were signed up to receive the themerisol-free shot)

The doctor spent the entire session telling me that I should read Jenny McCarthy’s book, and asking me if I believed that she had cured her son from Autism. She admitted that she had limited knowledge of children with Autism. She didn’t have time to wait for my daughter to “understand” the flu shot process. She walked us out to the front door, after many failed attempts to take my daughter’s temperature.

The attempted oral temperature taking process was a gross violation of my daughter’s protected space. She is tactilely defensive, meaning that she does not like to be touched. She began to echo ritual phrases over and over. I should have predicted the massive meltdown coming, but I was still advocating “Autism Speaks” to the Doctor.

My daughter went from persistent echoing in the hallway to hysteria in the open commons area.

She dropped to the floor screaming, and kicking and hitting me. This was one of the first times that I have ever seen the definition of Autism so clearly spelled out in my own daughter. She was completely overwhelmed by the environment, terrified of misread cues, frustrated with the break in routine, and desperate to go to a quiet safe space.

I stayed calm, and spoke extremely short sentences to her. I took her attention away from the other environmental triggers to my face, and my voice. I stopped touching her or trying to hold her down. I stopped talking for a bit, and waited for the words to process. She did eventually hear the word “car.”

She settled down, but it was only momentary. I had to pick her up, and march to the car. She screamed, like I was kidnapping her, as I took her out of the store. I calmly told each person that we passed, “My daughter has Autism. We are fine. This is a tough day.”

Only the pharmacist and an older lady had the courage to acknowledge our presence.

It was almost a relief to be able to be at peace with my daughter’s outburst. I finally understood that she has been teaching me a lot about my own self-esteem in the eyes of others. I finally realized that there is a lot of freedom in being able to do what ever you want to do in public. She has no concept of fear of what other people think. If something bothers her, then she lets other people know. If she likes something then she will let other people know. It is liberating to watch her sometimes. She is so different than me.

It is giving me freedom to be her mom and learn from her.

We’ve met other families with children who are on the Autism Spectrum. The children with Asperger’s are more verbal and scholarly than my daughter. They have almost typical language, but they lack social cues.

A student I worked with last year, who was diagnosed with Asperger’s misread manipulation, sarcasm, jokes, and irony. His reading was beyond grade level, and his intellect was difficult to keep up with. He would often spend hours on a single subject or working on computer and lego projects. He was very organized, except when his routine was threatened or altered. He melted down or lost skills when people didn’t give him his way. I learned that I could teach him more efficiently with short breaks, hobby-related coursework, and computer application lessons.

Other children that we know who do not fit the typical diagnosis of Autism may be labeled PDD. This category is the most subjective to me, and I often find it indistinguishable from Autism in person. Textbooks are more separated on these spectrum disorders, but in the classroom children with PDD are sometimes similar in actions to children with Autism. I learned that routine works wonders with my students who were dealing with pervasive developmental delays. I slowed my pace, used fewer words, and altered my teaching format at times. For some of these students it may appear that they understood what I was teaching, but they had merely memorized my formula or answer pattern. These students usually displayed typical behaviors of a younger child.

I learned that all of these children that I interacted with from the Autism Spectrum were similar to their parents.

They may have shown isolation towards classmates, but they would use more words with family members. There were unspoken cues, and openness that was not frequent with new teachers or staff. It was refreshing to realize how talking about mom and dad would bring awareness and joy to children on this spectrum. I learned the best form of interaction was to talk about family, and incorporate traditions from home with school.

We often had parents visit to show us things they were working on at home with their students. I enjoyed this, because some of the students had hobbies that they shared with their parents. Disability is only as limiting as families allow it to be. For some family members, the sky was the limit. Trips to France, “Autism Cruises”, dance and sports were all a part of life with Autism. I think some teachers fail to realize the dynamics of life. I will never look at my students without also seeing them as a part of their families too.

Lines of Legos

A 5th grade student diagnosed with Autism disorder constructed this exact lego collection, every day. It was always precisely the same. I enjoyed watching him create it, because the routine was fun part of the day.

surviving autism – letter to strangers.

Dear Strangers, (yes you, old person in line, person in Wal-Mart, ladies at church, acquaintances, distant relatives, random people who have to give opinions)

I’m so tired of Autism. I’m tired of being forced to play an advocate and spokesperson. I am tired of the lectures from people who know nothing about this part of our lives. How do you think reading a couple of articles in Time magazine, watching a news story, or listening to old wives tales makes you a freaking expert? Do you honestly think that I’m not seeking new answers more than you? It’s our life. Are you so ignorant that you must bring up “I heard it’s the shots” every time I talk to you? Are you so ignorant that you must tell me that “she’ll grow out of it” every waking second of my time spent in public places? Is it your life mission to make little of the struggles we have every single day?

Just wondering, but are you interested in our week? Well I’m sorry that you’re view of Autism is so limited but let me violate your image. We are people and this is the reality of Autism…. Not posted in some article… not scripted for some 60 minutes.

I work and go to school and take care of my daughter. I don’t have extra time to go to constant intervention meetings since one year old or special needs school starting at 3 years old (but I have). My college courses have dropped a letter grade because I have to attend constant testing and intervention strategy meetings.I’ve had to drop out entirely at times. My GPA took a remarkable hit from all the running around to this specialist or certain centers that could only accept my daughter part time. Extra paperwork, lots of loopholes and denial from certain environments.

Were you there when I found out my daughter had been denied food or placed in a crib or stroller for long times due to her “behavioral” or “delayed motor skills”?

Were you there when even her father left us for a better more fun life of fun? Were you there? Were you ALONE in the darkness of the fits and biting? The vomiting from touching something that grossed her out (her touch stimulation is extremely sensitive)? Were you there?

Do you know what it’s like to clean my toddler’s room daily, and deal with the messes of not liking the touch of diapers on skin. Do you deal with the constant stress of artwork from a diaper… the stress of having a child that needs constant Attention. Do you deal with the stress of not being understood by your own child?

Not being able to get through sometimes is unbearable. Do you deal with the stress of biting when she’s touched or grabbed. Do you worry that your family history or DNA created this mountain of stressors? Do you have to carry her when she goes limp because we want to hold her hand? DO you have to find ways to keep everything the same so that life can continue as normal? The stress of over stimulation of touch is incredibly stressful. (Picky eating, picky activities, and moments of chaos, from minor things.)

Do you make sense of the echoes and whines? DO you feel the pain of never knowing where this is heading? DO you know the pain of facing an uncertain future? Possibly kissing the dreams of white wedding and guys and college good bye for my own dreams for her… and allowing anything that comes to be a joy.

IF THE ANSWER IS NO… then can you please just SHUT UP. Can you leave us alone in grocery stores, public outings, or mom’s day out groups?

Can you walk away from you own need to give facts, antidotes, or catch phrases.

I know this seems harsh, but unless your child or loved one deals with the delays and stressors outside of the norm… YOU KNOW NOTHING of the stresses families like us face hourly.

YOU can rest assure that I have family and friends who help me find the newest books and updates on this journey we face. They are my assets and my strength.

YOU are an irritation and a waste of added stress.

I take today to vent because I really don’t want to have to say this to you in person. I know you mean well, so I vent for me. Maybe now I’ll give myself 6 more months of sanity while dealing with you… perhaps things will have changed. I hope so. Until then… Yes, that may be my daughter who’s flipping out on me in a store or family outing. It may be our family that stands near you in line or out in public… so just be merciful and give us peace, we’re not working on treating Autism … were working on SURVIVING it.

Autism Mom Moments

The new school is working out really well. the teachers actually line up outside to help the children out of the cars and into the classrooms. It is beautiful to see all the amazing children who are both mobility challenged and sometimes mentally impaired find fantastic community support. The car pool line is full of hard-working moms that open their wheelchair ramp vans to begin the school day. I am always so thankful for our blessings, and for their impact on our lives. I love these students, and I can’t wait to continue to fundraise for our school.

They are so organized. Having a center based on parent’s visions for a perfect support system is a dream come true. It makes my day so meaningful to watch my daughter and her friends love to fit in.

Week one posts – “The Unwilling Advocate” (copyright 2009 – EC)

It’s often lonely or frustrating to compare our situation to others. One minute I’m being told she’s high functioning, and the next her behavior is out of control.

I thought I’d write a little bit about this tonight. I constantly feel like talking about our plight with Autism is so ridiculous. I say this as I walk past a long row of wheelchairs on the way out of her special needs school.

There is no ramp on the side of my non-adapted Jeep. It’s normal, and so are we to everyone else. I feel like the main person who brings up that “we have a problem.”

She doesn’t look different, and she sounds funny but that’s practically nothing tricky. She acts eccentric, but who doesn’t? I think that this ambiguity is the hardest part.

We FEEL normal – in our own little world. It’s so awkward playing the unwilling advocate. I don’t like telling other people what Autism is 5 times a day. I feel more like “Wikipedia mom” than “Autism mom.”

That basic frustration is just when we compare ourselves to “normal kids.” It gets even more complicated when you toss in comparing yourself to other Autism Moms, special needs moms, and even multiple kids – extreme needs moms.

I want to be invisable at times. (Autism is so controversial – I think there are fewer fights with parents who have CLEAR CUT Diagnosis – If you LOOK like you have a socially acceptable need.)

People would gasp if we told parapelegics to be happy they aren’t quadripeligic… but this feeling happens all the time when your child’s mind is in a wheelchair… mental delays or retardation… come under public scrutiny a lot. “It isn’t as bad as…” is the destructive force that tears away at parental advocacy of Autism.

I constantly have to plead my daughter’s special needs into a public court of Autism opinions…

I resent having mild needs. I wish we had none at all, so we didn’t have to “bother anyone…” I feel that I constantly have to apologize for needing “minor supports.” How do you complain about anything when you are walking next to a wheelchair? How do you make a fuss about needing speech therapies for “verbal delays” when some children have no vision, no speech, no movement in their limbs?

Actually the PT (physical therapist) I talked to provided a tremendous insight I had never thought of… She said because all children have a chance to gain something from therapies… but for children close to progression – you have to push forward to make huge life enhancement… that can help them care for themselves and maybe even these others.

You can see MASSIVE progress in some of these “minor” substandard testers. They can go from stumbling to running. They can do much more than originally thought. Whereas there may be times that everything is tried and tried and tried with children in wheelchairs or with really tough needs… and progress isn’t possible.

It is perfectly ok to love children that don’t progress! That doesn’t seem to be acceptable anymore. I don’t mean that we should stop trying, but at what point to we just love our children? (And not stuff another therapy down their throat.) I think the change must come in us. I am the one that needs changing even more than my daughter with Autism.

Special needs students are the most normal people in the world. I think we are the strange ones. How often do we truly do exactly what we want? Are we comfortable enough in our own skin to do what ever it takes to get our point across – if we are passionate enough, maybe? Do we ever stop everything just to enjoy something we love? Is food, family, or comforting others our main focus? Would you drop everything for hobbies?
Would we ever be content using only our eyes or hands to communicate? Would we still be nice about it? Think of a special needs person you may know, and imagine never being able to escape those circumstances…. Would you be able to do it everyday with a smile on your face? Probably not… It’s better to look at special needs as the norm… because we aren’t all that normal either.

I watch typical children walk right past extreme special needs (quadriplegic – no speech). On the other hand almost an entire class of students with special needs (Autism, Downs Syndrome, and Mental Delays) will stop to enjoy a minute with a child in a wheelchair. They will ask about that child’s day. They will find a reason to celebrate that student’s minor progresses.

Watching this makes being visible worthwhile… because I can advocate for them.

New Autism Section

I added the Autism Mom, section to my Blog and will begin updating that this week. I look forward to sharing our journey. It will take 16 weeks (roughly 4 months) to dive into the Autism-related issues I want to talk about. So be sure to check back in from time to time to view new updates. This initial writing part will take some time to get rolling. This is so healing for me to release my fears and hopes about Autism with you.