A Beautiful Article - I Agree Heartily!!

picture from MSN post

A wonderful post today on MSN: "I am not a scientist, but I am a mother — I know why my son has autism". Carrie Cariello goes through the theories behind why children get autism, apparently the latest being circumcision, the bonding, being told what foods to eat, etc. Her 5 year old son summed it up nicely - he was 'bornd-ed with it'. She was also approached by another mom whose daughter is in her son's class and bravo to this young lady - she heard another child tell him that he was weird but she came to his defense saying 'he is exactly the way he is supposed to be'.

That he is. He is what God intended him to be. I cannot go back in time to definitely tell environmental, genetic, food issues -- Will came to us at 2 1/2 years old, we were his 4th home. He was already showing signs of autism. We know a little bit of background: he was a premie (born at 5 1/2 months gestation at 5 pounds 6 ounces), his mom was doing drugs. Was this a cause?? Haven't heard much with the drug issue. His past foster homes were a variety of situations from abusive to no one paying attention to him (stuck in a playpen in front of a TV), to a another foster mom taking time to read to him and learn his alphabet.

I love the fact that Carrie goes through a list of what drives her crazy about autistic characteristics and what endears those features to her. I have my own list:

* From when he wakes up to when he goes to bed, the conversations about food never ends and it always is the same -- he wants either hamburgers or pizza and a salad and ice cream.

* He constantly focuses on vacation - when are we going and where. It use to be we could tell him the facts and it would stop the constant asking. Now it just promps him to continually show us (and anyone else who will listen) a calendar and write where we are headed (or where he thinks we are headed).

* He always talks about his CCD classes and when they are (even though it is on the calendar) as well as when we are going to church.

* Right from the dawn of day, he constantly talks about taking his shower and shaving even though he knows the time of day that usually occurs.

* He is always showing us a DVD he wants to watch. We tell him to put it on (he knows how to work the DVD player and the remotes involved) but he walks away to the computer and will come back when someone else is watching something to try again and again and again and again.

But then come the hugs, at times when you least expect them. Although at times, you know a hug is coming when he wants something (just like any other child). He will put away his clothes, clean off the table, put food away in the refridgerator, you guessed it - when he wants something. But he is who he is, just like any other child or 23 year old young man. He tests my patience every day, he tests my ability to finish what I am doing with his constant interruptions of the same thing. But when he is not here, after I enjoy some peacefullness and quiet, I do look forward to him coming home so the daily barrage of the same topics of conversation can start again - usually I try some other way to get through them like talk to dad, we'll figure that out after supper.

So Carrie, thank you for the wonderful article and insight. We can all relate, we can all add our own twist on this.

End of Year Financial Reporting.

I am not a legal or financial accredited person. I can only speak from personal situations. Please contact a local professional who specializes in these matters to help answer questions.

Well it is the start of a new year and the old year has to be accounted for. As guardians for Willie, we are responsible for his finances. I brought out all his paperwork which ranged from receipts to bank statements to pay stubs. The past few years I had been pretty well organized but quickly found out that this year, I am not so lucky. While I have been, literally, stuffing all this paper into an envelope (so everything is in one place - good!) I have not been balancing it all out, copying off his monthly statements. He had primarily a savings account; then I decided to open a checking account since with a ATM/debit/charge card attached to it, it would be easier to keep track of things. So when his SSI money started being deposited into the checking account, I closed the savings account with all intentions of making copies of his statements BEFORE the bank stopped putting them online. You can guess what happened -- I did not do that so now I am missing some transactions and have to go to the bank and have them help me out. Lucky them!!

So I write this with hopes of reaching someone reading this -- be more organized. Every month balance out the account, while it is good to have all receipts in one location, at least have them organized by month, have receipts written out for any money taken out for things like sitters (not respite), trips to the barber shop. I use a receipt book like you would use for rent receipts. Will likes to buy snacks at his day program so I send in money and they send a receipt.

Now to lay it all out, match it all up. Soon I will receive forms through the mail for Probate Court so I need all the information ready to go showing how his money was received and spent. Last year, mid-year, I received forms from Social Security

asking me to account for his spending so I need this information again because they will do the same. You can probably assume that one of my New Years resolutions is to be more organized, at least with Will's things, so I will try. My plans are to put all papers and receipts in an accordion folder, divided by month to make life easier.

While all this is good for guardianship for a special needs adult child, the same principles can hold for taking care of an elderly parent. They may need to get better organized as well, for YOUR sake, if you need to step in and take over or find a bill that needs to be paid while they may be just in the hospital or rehab for a period of time. As time goes on, you may need to step in as guardian or get Power of Attorney to handle matters. Start the talk with your parents, get information from a local professional. Be prepared!

Other resources you may want to check out for additional views: Friendship Circle, Families.com, Disabled World, Special Needs Alliance, Special Needs.com.

A new term for me with Will.

Will came home from his adult day program with a note on his iPad about a 'not-so-good-day' that he had -- apparently he was frustrated a lot and they saw a few incidents of 'Self Injurious Behavior' or 'SIB'. Now knowing Will is not violent or has ever exhibited any issues of what I thought was SIB, like head banging or biting, I got worried. Yes sometimes he balls his hand into a fist and will hit his headphones or chin lightly, or will dance and jump around and slap his thigh, I never realized this was SIB. Granted it was not a behavior I liked or endorsed and we were trying to stop it. So I decided to take a look into it and read about it. I have not found anything yet that specifically targets adults, just children but I guess most of what they write can be used for adults with autism. An ezine article, 'Treating Autism Symptoms in Your Child', by Craig Kendall tells of several reasons why your child might do this. One is that they might be overwhelmed or overstimulated and need to focus on something internal or external and pain does that. Second is that the child might need more tactile feedback. Third, if the child hits ears, it may be a sign of an ear infection. Lastly Craig states that it may be related to a specific type of seizure so contact your physician. He also states that when a child is non-verbal, there is a frustration of not being able to communicate. So besides the obvious of finding a communication method, we should also work on teaching the child ways to lessen the frustration like through diet, relaxation techniques, exercise, or deep pressure. We try to get Will to type out what he feels though this is hard for him to do. Of course, you can keep a record of what is happening that triggers this SIB that will help to stop it before it happens. In Will's case, he does it when he is happy or sad, when he listens to his music or on the computer or just sitting quiet. Of course, seek medical help if you are not sure what to do or talk to your child's teachers or therapists. Another article by Gary Heffner, "Introduction to Self Injurious Behavior" from Autism Help, states: 'It would make sense that the seriousness of the self-injury should direct the choice of treatment. A child's whose life is in danger should receive the most aggressive treatment. The choice of treatment needs to be up to the parent, of course. In some countries or states, there may be laws that limit the type of treatment a child may receive, however. These laws may require treating self-injurious behavior with positive behavioral programs and outlaw the use of aversives, even when the self-injury is life-threatening. Read how one parent described this approach: "Currently, there are 100's of autistic people being tortured by ineffective, tedious and ridiculous "positive behavioral programs" - Worse, even when these autistic people have repeatedly failed to respond to these conventional methods, several state laws have prohibited the use of mild aversive therapy, which - ironically is one of the most safe, effective and humane therapies used to protect a compulsive self-injurious autistic person-who has otherwise NOT responded to a plethora of conventional interventions. It's a crime to allow a person to continue injuring themselves...and the worst is the on-going practice of behavioral psychologists taking data - yes data - counting the number of times the autistic person smashes their skull with their fists, or rips their hair out... it's called a "functional analysis" - and this practice should be illegal. I never want any family or child to suffer the unbelievable hell we experienced dealing with uncontrollable self-injurious behavior. Families should know what the alternatives are to help their child. Skin-stimulus therapy is very effective in that small population of self-injurious children, who have otherwise NOT responded to other therapies. Many people do not realize that it's extremely complex to treat a profoundly-autistic or profoundly-disabled person's self-injurious behaviors - as they have limited cognitive abilities; hence don't respond favorably to ignoring, re-direction or pharmaceutical interventions. The skin-shock works best for compulsive self-abuse, as it acts like a nudge on a record player that keeps playing. It's like it "startles' the otherwise very distant autistic child into reality. It actually teaches them self-control. Some of these types of autistic children are on a very primitive level - and it's hard for others to accept that they simply don't respond to conventional therapies." (An anonymous parent). Try the non-aversive procedures first, but for those children whose seriously self-injurious behavior has not responded to these procedures, it may pay to look at aversive strategies as well.'

Special needs or special talents to be discovered.

I have not been able to write much lately due to family issues but found I had to share stories I have been coming across. We hear and see stories about special needs children and young adults and challenges they face daily. Yes, it is true; they have a lot to overcome. Yet there surfaces stories about those who do overcome. They are happy in what they do and become very adept at their talents. Here are their stories.

From LifeNews: "Kyle Maynard is a motivational speaker, author, entrepreneur and athlete. Despite being born with arms that end at the elbows and legs near the knees, Kyle’s wrestled for one of the best teams in the Southeast, set records in weightlifting, fought in mixed martial arts, and most recently became the first man to crawl on his own to the summit of Mt. Kilimanjaro, the highest mountain in Africa." Born with a condition known as congenital amputation, his parents set out to have him live a life a normal life. Kyle lives on his own, can type and eat without aids, drive with little adaptations. He was 'GNCs World's Strongest Teen', was ESPY Award Winner (Best Athlete with a Disability), was inducted in the National Wrestling Hall of Fame; is a certified instructor of CrossFit - working with wounded soldiers adapting their fitness regime to their needs. Best of luck!

Here is Ben Jackson, born with cerebral palsy but has decided he would rather wrestle. He is working on competing on the international level. Keep up the good work!

Zachery Mackenzie was born with hypo plastic left heart syndrome which means that the left side of the heart is critically underdeveloped. Doctors told his mom that should he be born live, he probably would not live a few days. Now he turns 19 and just graduated high school. Surgery and prayers got the family through the hard times when he was growing up. Where you headed now?

Congratulations to Natalia, Natty, Goleniowska for winning a spot in the back-to-school ad for a store in the United Kingdom, Salinsbury. What's really the big deal? Natty has Downs Syndrome. As the Downs Syndrome Association states - Downs Syndrome children are a part of everyday life and therefore should be included in advertising and that Natty was a delight to work with. Way to go!

Chris Koch is a dedicated farmer at Apricot Lane Farms in California doing just about anything that other workers are doing, including driving a tractor. Please watch his amazing video. I hope to learn from his undying tenacity.

A mom's ingenuity!

(pictures from Daily Mail/Mail Online) From the mind of a mom whose son has cerebral palsy - a walking harness, an 'Upsee'. Debby Elnatan's idea was put into production by a company in Northern Ireland, Leckey. This support harness, as you can see by the picture, has the child attached to an adult and so he/she can 'walk' with them. Today was the global launching of the 'Firefly Upsee'.

The harness attaches to the adult's waist and the child's legs move in step with them to get training to walk. Hands stay free. From Claire Canale, Firefly's clinical research manager and occupational therapist: "Short-term, the Upsee improves special needs family participation and quality of life, while research suggests it has the potential to help with physical and emotional development in the longer term. It has been humbling to see the progress and happiness the Upsee is creating; watching children to do simple things for the first time such as kicking a ball or playing with a sibling is wonderful for everyone involved, but especially the families.' You can check out the Firefly website here. This company and Leckey offer items for disabled and special needs children. Leckey covers mobility, bathing & toileting, sleeping, early intervention, etc.

Almost the 2 week period after starting adult services.

Well, it has been an interesting 2 weeks. Willie has seemed to settle in relatively well with the facility. It took some time for him to get used to the new location -- new faces, new noises, new schedule. They let him get comfortable by letting him stay on the computer for a while each day (which he loved). Then they decided it was time for him to get to work. He gave them some grief, but after I suggested they put his schedule on his iPad, he would be fine (it might take a couple of days) but it would work. I had alredy set up a general schedule they just broke it down accordingly. He has seemed to settle in well with that. They also had an issue with him when it came time to leave. He would see others leaving and he was still waiting and would cry. We put a time in his schedule when he had to 'wait for a ride'. That seemed to pacify him.

The biggest problem we have had has been with transportation. He was approved for RIde and all along we have been pointing out their vans/small buses as his future transportation mode. Well, what I did not realize was that if there was no available van/bus, he would be going in a taxi!! I rode with him the first day (which was my plan all along) - in a taxi. He seemed Ok, said he wanted to go by himself. Then I tried him alone -- some days good, some days not so good. He was getting upset, crying, tried to open the taxi door at one point, while it was in motion. Got a call from the company -- now we have a safety issue so he has been temporarily suspended from the program. So the case manager and I are putting our heads together to find a solution - right now I drop him off and pick him up everyday. Don't get me wrong - I don't mind it but we are trying to give our young adults independence and teach them how to get around and how to deal with people outside the family. We will not always be here. But the trip is about 80 miles a day (round trip 2 times a day). Yes Will and I picked the facility!!! We tried a more local facility but they were not taking names at the time. This place is wonderful with a great reputation. The people are great and have been very patient and understanding. I can call at any time to talk to someone.
Anyway - one travel solution was for a family friend to take Will a couple times a week (we would pay for his/her time); the other is to meet up with the facility's own van they use to pick up more local clients, maybe at a halfway point. This way he can ride with his peers in a vehicle he is more familiar with. So now we wait to see which way to go. We are too far for their own van to come and get him. Then we can work Will into a RIde vehicle after he has settled in more, if we need to. Anyone out there with suggestions??

Musical success for a boy without arms.

(picture from LifeNews)
Meet Jamir Wallace from New Jersey. Born without arms, he watched his sister play the piano and decided he needed to choose an instrument to learn. He picked the trumpet and has never stopped playing. His family and music teacher encouraged him and found someone who was able to make a special stand for his trumpet, which he plays with his feet. Jamir's classmates, teachers, and of course family all push his strengths and what he can do, especially playing in the Green Street Elementary School Band. The story might seem familiar - remember Tony Melendez, who plays the guitar with his feet. Just to add, Jamir is also learning to play the guitar and was able to spend his 8th birthday with Tony at a concert in East Brunswick, NJ. Jamir is being mentored by a local high school senior, Dan Servantes, who will be attending Berklee College of Music and says Jamir has a gift for music. The can-do attitude will get him far in life, as they don't look at themselves as being disabled, as we should not. To watch his video, click here.