Hello!

This is my first post for the new 2010 school year.. feel free to send me suggestions/questions etc.. I have a 13 1/2 yr old with autism (diagnosed around 4 by school system) , almost 9 yr old with ADHD, a 4 yr old with autism (diagnosed at age 2 1/2 by the state), and a typical 3 yr old.

let me know when/where you want to begin!
Beth

end of semester

I'm guessing its the end of the semester; it was great to chat with you all and answer any questions you have; basically spread Autism Awareness where ever I can.

again, if any of you want to email me further throughout your education; please do so.. I never get tired of talking about my kids.. lol

thanks again.
beth

Self-Determination and Disability

One of the greatest challenges of rearing and teaching a child with a disability is knowing when to back away. Well-meaning parents and para professionals at times do too much for children with disabilities because they can't stand to see them become frustrated. They want to help.

One of our jobs as teachers and parents is to create independent learners. Children with disabilities, while being accommodated, must learn strategies to use on their own when they no longer have an IEP. Children must learn to make choices at home so that when they are no longer living with their parents (even in a group home or assisted living facility) they can function independently.

In my work as a college instructor, I have heard other professors state that students' parents call them to complain about a grade their child received in class, or parents are in other ways intruding into territory that the student should be covering themselves. Again, well-meaning parents sometimes try to create a perfect world for their children, but end up enabling them instead.

This article from PBS Teachers uses original research to convey the importance of self-determination in infancy. Tips for promoting self-determination are covered as well.

different challenges for elem/middle/high

ok.. so some random thoughts here.. just reading over many of the Autism websites I belong to.. on my facebook page I probably have 1/2 dozen and blog on some of them regularly.. I"ve noticed one imparticular has gotten pretty "catty" lately with she said/she said type stuff...

basically, I have to say there is NO RIGHT answer that works for all .. its whatever works for your family at that point in time and it will probably change year to year just as the child and his/her challenges change... I'm sure I am not telling you all something new..

but one of the biggest things I notice is the age groups and what the challenges are:

Elem: speech.. parents just want to hear their child say mom/dad/ bye etc..; behaviors and meltodowns; school and what should my child be "getting"

Middle school: SOCIAL!!!! the kids have the academics down because the parents have done probably 20+ IEP's by now; so they have the accomodations.. the kids need soical skills help; typical peer interaction; playing sports; band; dance; drama whatever the teen can do to get them out of the house and around their counterparts.

High School: Vocational/housing... parents have realized.. holy crap! my baby who didnt say a word until he was 4, is now 18 and getting ready to leave high school!!! (or age out at 21).. OH MY GOSH!! where will he go everyday??? what will he do?? who can he be with???

Autism, down syndrome; cerebal palsy; most of the people you will be working with all; will have a lifespan disability... depending on what age you choose to work in; you may encounter these issues...

Encourage sports to the person/family

We are very fortunate here in MB, because we have 1 of only a handful Miracle League Ball Fields. A specially designed ball field that is created for wheelchairs/walkers/etc.. that will accomodate most devices a special needs person would have. and the program which allows a young person with any disability to particpate in playing baseball.

I would highly recommend most families trying to find a local club/organization that offers assistance to kids like ours; either providing a mentor or allowing the child to use a family member/friend to be with them while playing and learning the rules of the game.

most areas have a special olympics team locally, the parent just needs to do a little digging and find these resources.

whether its a team or individual sport, the family can participate together; friends can come out and cheer; its a time when lessons are learned and some realize they "dont have it so bad".

we are very happy that Cooper found swimming, through the local chapter of Spec. Olymp. He has really come to enjoy it; its an outlet 1x a week while he practices he gets his "stims" out, works with a team at practice doing relays, drills, and learning the correct ways to turn, strokes and overall correct swim procedures.. he takes direction semi well from the coach; parents sit up in the observation deck (but I still see him and can relay to him to focus or stop screwing around).

He doesnt really get that he has a disability, because he's pretty much been able to do what most typical kids to up til now.. he has never wanted to do team sports through school, so we've never had the discussion of whether or not he can/can't. He "sees" at practice each week the different types of kids,... there are many with Down Syndrome and he can see physical characteristics; he has never asked what they have, but has made comments we have had to work on.... we have never sat him down and had the talk.. you have autism... this is the definition.. we have told him many many times.. your brain works different than most peoples... yes everyone is different, but yours works a little slower and you hear things different and react different, etc.. he knows I volunteer and do Autism things.. he calls it my work.. and when he's bored.. says.. oh no.. not more autism work.. usually when he doesnt want to go to another fundraiser /function.

some govt aide provides respite for families.. this is a good time to allow the child to have a non family member help them with their sport so the family can sit and enjoy..

Will learning about historic events hurt him mentally??

well my non profit has begun an afterschool group to get the higher functioning kiddos together to playgames; talk; do teen things.. cooper was very angry about me making him go.. kept saying he wants things to be "normal" .. which means he doesnt want anything new in his routine. I told him he could be brave and do this for me; after all I have been taking him to swimming every Tuesday night and I'm sure I'd rather stay home and do something else if I really wanted to.. he quickly decided he'd try it this 1 time. he was ok when I picked him up; very stimmy; scripting a tv show and waving his hands around.. so he went out front to have some quiet time before getting in the van with siblings. He said he would be willing to try it again; since they decided to go see Alice In Wonderland 3d at market commons this weekend.. he is seeing there are others like him and it scares him.. some have different "stims" and he doesnt quiet know what to do when they "go off"... we are talking about how everyone is different.. he says he doesnt like different people.. which is funny considering who its coming from.. lol
he has begun swimming for speical olympics every tues night for an hour they practice. he competes in competitions around the state; depending on where/when and if i can get away for a night to take him and find sitters etc.. they are on weekends; but when your husband works sundays it doesnt always work out. he swims backstroke and is pretty good. he has won several gold medals over the last few yrs and says.. "its what I do".. he refuses to consider any other sports as an option. he had to make adjustments because the usual coach has been out the last few weeks (lady) and he had to adjust to a man coaching and not really knowing him at all. he cried; splashed; was mean to the other swimmers; I pretty much leaned over the observation deck and reminded him.. we can leave and not come back at any time.. i know you are upset and scared of someone new; but we need to be flexible and it will be ok.. she will be back when she can.. she has many things to do as well as help you swim etc... he pulled himself together and was fine this last week when she didnt show up again.

he has a huge test on Africa - regions; temperate zones; rivers; religions (Islam) and who fouded it and so on... crazy for me to try to explain it to a kid that barely realizes there is another part of the world when he is in his own little world.. its one of the many things I struggle with... how much is too much when including him in "normal regular ed.?"... I mean this was our goal all along.. to keep him mainstreamed until he ages out at 21... but in the mean time he could care less about Africa and religion and 1000's of year ago.. he lives in the present and most kids can not fathom 1000's of years ago, let alone slavery and things like that.. yes it's history, but do I really want him to know and be scared of the events that he is reading about? some of the things are horrific and he cries about what people did to each other and if they can do it to him or me...

its a double edge sword... yes he is learning with his peers and taking tests and pretty much passing them and keeping up.. however, I'm wondering if it is affecting him mentally; psychologically?

Great Teachers

Among other topics, this week we are discussing what makes a great teacher. Can you tell us about some of Cooper's teachers that you thought were great? What made them great teachers?

Manifestation Determination Meetings

We are discussing disability and its impact on student behavior this week. Has Cooper ever engaged in behavior at school that has required suspension according to school policy?

Also, what is Cooper's Least Restrictive Environment (to what extent is he educated with his non-disabled peers)? How was it determined?

Unmet Expectations

Beth,

You mentioned in one of your comments that the life you thought you were going to have did not materialize. The grandchildren that your parents thought they were going to have did not, either.

If you don't mind, would you comment on the effect this had on you emotionally?

Transitions

One of the topics we're discussing this week in class is transition. Could you comment on Cooper's transition from elementary school to junior high? And also his transition into adolescence? Any difficulties with either of the above?

For me, having a child with Autism is summed up in 1 poem..

*many of you will have heard this poem by the time you become teachers.. it is a very important poem because it sums up what most of us experience at one time when we are told that our child will never be "normal/ typical", we have to give up a life long dream to come to terms with a lifelong disability.

WELCOME TO HOLLAND
byEmily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
________________

Daily Care Needs

Thank you, Beth for your first entry! This is the best addition I have made to the class in a long time!

This week, we're discussing daily care needs for children with severe disabilities. Do either of your children require therapies after school? It is important for our future teachers to see how much time it takes to care for their students outside of school.

Sometimes, even though we mean well, we educators ask our parents to do just "one more" task at home - practice reading, do this exercise, etc. And it can be difficult to fit that one extra thing in!

Introduction of Cooper

Hi everyone! I'm Beth, mom of 4 kids. Two have ASD's, one has ADHD and one (so far) is "normal".. love how we all say normal.. Not sure how to do all this, as this is my 1st blog experience.. feel free to ask anything..I'll probably type as though I'm talking to you in person so bare with me if some of rambles on or doesn't make sense.. I tend to get off track sometimes..

My oldest son, Cooper, will be 13 in June. He was a terrible pregnancy. I was sick from the day I found out, til after I delivered him. I was on many, many meds; most of which were nausea meds for cancer patients. I was in the hospital the majority of the pregnancy due to vomiting and all that goes with it. He was delivered fine; no problems; grew normally. All though we noticed from day one he slept ALOT... being a first time mom, I had no clue this was not normal but he had to be woke up to eat and play. He laughed, cried, did all the normal emotions a baby does.. no concerns.. he was growing fairly big, quickly. He had a big head but was always measuring off the growth chart at his well baby check ups so nothing was mentioned out of the normal. I was one of the moms who also got their kids shots on the THE DAY they turned 3mths; 6mths; 9mths; etc.. I wanted it to be exactly right when I put that length/weight in the baby book....I had taught pre-school for several years before having Cooper; and did notice that he wasn't saying anything... we lived in a retirement condo area; no family around at all; not too many friends; none of which had kids or were at home during the day. I was told numerous times by the Ped. that he's a boy; get him out; do things with him.... so I did.. he didn't like to do different things; he hated the car in reverse..would panic and freak out when it rolled in reverse.. so I managed to park facing out at all times..just one of those "quirky" things he did.. I didn't notice however; that he never pointed.. he did have eye contact and smiled and played well with me and his father... one thing I do remember is when I would take him to the tennis courts to play; he would rather walk the boundary outlines than play with the balls or he'd ride his bike around the lines and never off it.. to me I thought my kids a smart one! already following lines .. didn't realize what it really was. oh the hind sight!!

age 2, I was finally heard by the Ped... he referred Cooper to our early intervention program here in SC called BabyNet. He was evaluated to have speech; motor; cognitive delays and qualified for speech, OT, Pt, and 30 min a week of play therapy..in the mean time I enrolled him in a preschool program at a church I'd heard about...he went 2x a week for 3 hrs... they told me he never talked or played with the kids, he sat under the table with legos and balls; because he never bothered anyone; they just left him alone. His class picture, he is holding balls..he had to be picked up first each day or he'd scream in the hallway because he was not leaving as other did...so I had to get to the church 20 min each day early; just to get to the first of the line each time.... ..

By age 3 he was going to be transitioned into public school...OH BOY!!!.. this sounded wonderful to me.. I had no idea there was such a thing... your kid can actually go for free, 5x a week, all day to the elem. school just because he doesnt talk and has "quirks"??? sign me up!
For the next year (age 3-4), he went to the elem school across town. I drove him and picked him up every day. He was not allowed to stay past noon because he was too disruptive and wouldnt nap..at the end of the school year I was approached by the teacher.. had I ever thought about Autism... ?? Well, I had been told one time by his speech therapist that he couldn't have Autism because he could draw a smiley face .. which showed emotions..which kids with ASD don't understand.... YES!! I know .. CRAZY!!! and speech teachers are not allowed to say things like that either.. once again.. hind sight...

Our school system has an Autism Learning division.. the school he attended had a consulting teacher for Autism right across the hall from where he'd been the last year... she had been watching him and wanted to meet him for an eval.. after 20 min; she said she wanted to meet with my husband and I at the school the next morning to discuss the eval..

(I did not know this but before Cooper was diagnosed, there was a class action lawsuit against the school district to get ABA for kids; Cooper came through the system a few months after it was dismissed) we were told he scored enough to be considered Autistic. We were not shocked; we were not scared; numb; nothing.. we didnt even know what the definition meant.. they never told us what it was, I guess they assumed we had looked into it..the internet was not huge and we didnt even have it in our condo; so it was pretty foreign to just look something up and be given enough info to soon give a speech on it.

They offered him ABA therapy 30+hrs a week, intensive 1 on 1; is what we were told.. speech; OT; all kinds of wonderful things.. I mean we'd won the lottery pretty much as far as services goes.. in the last 9 yrs I have never met 1 person with a story like mine ; where their child received "it all"... we were quite lucky.

He stayed in the special ed classroom for another year, began to say sounds, do more things, etc.. then he was mainstreamed into kindergarten.. wonderful, understanding teacher.. she really took to Cooper and his therapists.. here was a kid that was really struggling to learn and didn't know how to goof off; he has a wonderful memory and is a sight reader.. so he learned his word wall words in kindergarten in a matter of months for the whole year! He learned routines and how to be flexible as well... more importantly... he was with NORMAL kids... they saw how he acted and from day 1; were told "he's ok; he's just upset; he doesn't understand; can you show him how to do it" and so on... the kids were always aware of him; he was front and center and picked to do the same jobs as the rest of them; he just had a "helper" with him..

2nd grade we noticed he was becoming obsessed with movies.. he repeats them; knows obscure facts about the; repeats scenes over and over; says many comments from movies at the wrong time.. he got into trouble alot.. he couldnt focus.. we decided to take him to MUSC in Charleston to see what the Drs thought about meds for him to focus. He was started on Adderall Xr for a few months then when school was over she changed him to Paxil (big mistake!!!) It's addicting and he went through withdrawl at the end of summer; like cocain withdrawl!! it was awful... sick and delierious...never again...

He stayed in that school through the 3rd grade; always mainstreamed; always with a 1 on 1 aide. Still got pulled out for resource (math, writing, speech, etc) but held his grades at an average level and had tons of friends.. he did many inappropriate things ; he was not the perfect kid).. would pull his pants down in class, said things that hurt feelings..( why do you have a big gap in your teech?) etc.. but each was a learning lession for all around him and he included..

3rd grade was most difficult, the teacher that he was placed with didnt like him; didnt like that he had an aide with him; didnt like that he had so many accomodations (which he has a ton); pretty much let it slip one day that she didnt "buy into all this" and he was removed from her class. He was moved into another classroom and had to start over; he was a mental basket because he knew she did not like him and became very anxious... we (his team) began a Circle of Friends lunch. every wed. he and 3 others would go out to a portable and eat lunch, skip recess, play games, chat, do a social story, etc.. hang out pretty much.. you'd have thought that he was taking these kids to the mall... there was a waiting list each week for the kids..the teacher loved it ; she even used it for many years following for other scenarios..

It was time to consider moving him to another elem. school.. his little brother would be started kindergarten soon and would be attending the school in our area.. Cooper's school was not our designated area. so we decided it was time to move him.. he'd go to 4th and 5th and then move on to the middle school...

The aide moved to the new school with him and we introduced Circle of Friends and it continued to be wonderful.. the teacher was handpicked (a male teacher) and he was wonderful. so undertanding and Cooper was paired with several boys that were athletic and didnt fit the usual type for hanging out with someone like Cooper. He had transition summer services to get him used to the school before he started and he did quite fine. He began in the chorus and was 1 of 2 boys in the whole thing; so he was pretty much guaranteed a part for every show! He stood in front of the whole school at most assemblies and announced things; sang a solo; loves being in front of the camera.. drama / music is his thing.

His favorite channel is TCM; he subscribes to the monthly magazine; he has all the old dvd's of lucy ball; abbott/costello; silent films; Gone with the Wind is one of his big collections; he knows all the actors and facts about them..

He is now in 6th grade and in middle school; he has grown 7 inches in the last 2 years and is quite tall; thin. He has begun stimming again, nervous, anxious, yelling, screaming when frightened; fire alarms are the worst; he has earplugs in his back pack for gym and any other time he may need them. There is no more recess or circle of friends. several schools combined to form this one so he has very few friends from the old school that are in his lower classes.. he is not interested in school like he once was; likes chorus but does not get along with the teacher as this is the "big time" and shows are paid admissions and graded and etc... so he is not "cute and funny" when he messes up or goes off on his own, etc.. that was a hard pill to swallow! He runs from class now when he doesnt understand things.. this is a very extremely difficult year based on the fact that we've had a pretty easy ride up til this point.. he was never high functioning.. the ABA and all the extras we created for him.. got him to this point.. he is maintaining an average grade but his aide creates his tests now... she takes his notes for him as his handwriting is so bad. he takes tests on his own or orally from her in a separate room.. so many things we had him doing maintstreamed he's regressed because of his fears/anxiety with the new school and situations he is put in each day. school begins an hour later and lets out an hour later from elem. school.. that alone was a huge ordeal for him.

the drs think his biggest hurdle is puberty; he is getting a moustache and has to use deodorant, etc.. and cries that he does not want to grow up. he has been suspended from school already for stomping on a teachers foot (an entire day of unfortunate things led up to this final breaking point) he has pulled a teachers hair and grabbed his own aide by the shoulders; all when faced with anxiety and frustration...

I have typed all this just to give you a glimpse of who Cooper is. I can tell you anything about him and answer any question you have about him or any therapy he has ever received. Please feel free to ask whatever...

Welcome to EDP 478/578!

This forum is designed to introduce you to my friend Beth Hedges, and to facilitate interaction and communication with her during the semester. Beth is the parent of four children, two of whom have Autism. Beth has graciously agreed to communicate with us this semester about her family, treatments, and school issues.

Welcome, Beth!