Our story

Our experiences and services used for our special needs young adult son. Also a sister blog to our caregiving & caring for elderly parents.

Tuesday, October 29, 2013

A Checklist of Sorts on Halloween with an Autistic Child

I was looking around at different sites and came across "About.com Autism Spectrum Disorders".
There was an article on 'How to Enjoy Halloween with Your Autistic Childe' by Lisa Jo Rudy. Since we are so close to the day, I decided to just copy the list that is there, for all to see and read, no commenting. Hopefully this may help some families out there at this last minute. I guess - 'better late than never!! 1: Use videos and books to prepare your child for Halloween expectations. There are many Halloween options out there, so choose the ones that are most like your own real-life situation. 2: Together, decide what costume your child will choose. Take into account not only his or her preferences, but also sensory concerns. For example, a Spiderman costume may include a full mask - which can become overwhelming. Some children love face paint, but others can't take the sticky sensation. 3: Make a plan that you can stick to. Choose a time to leave the house, plan a path, and know what will happen when you come home (can he dump the candy on the floor? What may he or she eat? If the candy is not a good choice, what substitute treat will she get?). 4: Keep it simple. Knowing your child, what's reasonable to expect? If he can handle just one house, that's fine. Know that, even when you see other kids running up and down the street, it may not be the right choice for your child. 5: Create a social picture story. Use digital photos, images from the web, or other sources to show and tell exactly what your child will do. Include all the steps, not forgetting that he must knock at the door, say "Trick or Treat!" and "Thank You!". 6: Read the social story together, not once but as often as possible. From time to time, toss in a clinker: ask - "what if no one is home?" Help her understand that it's ok to skip a house, to take a piece of candy from a basket (if that's ok with you), and so forth. 7: Practice, practice, practice! Put on the costume many times before the Big Night, and work out any kinks. Role play the entire treat or treat scenario as often as you can. 8: Act out a number of scenarios so your child has a small repertoire of possible responses. For example, what should she say when someone says "You look beautiful (or scary or creepy)!" What if you don't like the treat that's offered? What if you meet kids you know? 9: Scope out the neighborhood ahead of time. Do you see any decorations that might upset your child? Flashing lights that might trigger sensory reactions? If so, consider skipping that house (or visiting ahead of time) to avoid melt-downs. 10: Consider recruiting peer support. If your child with autism has no siblings (or his siblings have other plans), consider recruiting another typical peer to go house-to-house with you. Explain to that child and his parents that he will be helping your child to understand Halloween a little better. You may be surprised at how helpful another child can be! 11: On the big night, remember to be flexible. If your well-prepared child suddenly rebels against his costume, consider letting him go in just a silly hat. Remember that Halloween is for fun - and it really doesn't matter what he wears or how many homes he visits. 12: Take pictures. Get excited. Have fun! Even if you're only going to one house, make it an event. When you're done, put together a memory book that can help you prepare for next year. This makes a lot of sense and I wish I had seen it earlier, to give us more time to prepare but some preparation is better than none. Happy Halloween!!

Thursday, October 24, 2013

Getting Closer to 21, Getting Closer to Adult Services.

Well, I have been busy trying to keep a handle on Will's transition to adult services. In fact, as a surprise, Will's teacher has
asked me to speak at an after-school parent meeting on transition!!! This would be talking to those parents starting or are in the process of this. Hope I can rise to the occasion. Anyway -- just to update on what has transpired to bring us to this point (hopefully the information can help you): as I have mentioned before, Will turns 21 in December. Over the summer, we visited several agencies that we were interested in. (See other posts on this blog for 'transition') Our state is making changes in the work program for adult services, so many agencies have stopped taking names/referrals. But off we went anyway! After seeing 4, I spoke with his teacher to see if she had any feedback on these programs since other students have moved on to these local places. She told me about a couple that she knew about and told me something I did not know -- you can divide your time between 2 facilities if you want!! Just what I wanted to hear -- we like a couple of places for different programs they offer. One was good for employment and the other had great social/community involvement. So I was able to ask his Developmental Disabuilities Case Worker to put in a request/referrral for placement with the 2. In a couple of weeks, we find out one is not taking new names so the search started again. We did find another agency and we are trying to get in there, this one has a nice community involvement. With the other one for work - we had to have our pediatrician to fill out a medical questionaire and I filled out a social history form, which the case worker forwarded to them. One day, his case worker came by to visit with many more papers to sign including SSI and Medicare. Now we wait again while they review the paperwork, assign it to a case worker on site who reviews it, then we sit for an in-take meeting. We have to figure out which agency is the primary one, to write up his Service Plan first (using his Support Level evaluation from his SIS); then the secondary one does their part. Also, we have to make sure we have transportation: one place will probably provide their own since they are close. As for the other, he may have to take a special transport bus supplied by the state. As we wait, we need to keep options open, as these may stop taking referrals. I hope that since we have gotten this far, we may be good. Service providers need to have things in place 45 days before the adult turns 21 to go. I know I started early but I thought I would rather be early and have his name there than wait. Hopefully there will not be a long time from when he gets out of school to when he starts somewhere. A few people in these agencies have agreed with me, that it is good to start early because those young adults who get to stay home for long period of time after school ends for them, have a hard time adjusting to attending adult services -- they have gotten comfortable at home with their routine, sleeping late, having mom or dad around. I don't know if he can start at the beginning of January but if he can be somewhere by the end of January, that would be great. This is still not over -- I'll keep you posted!!!

Tuesday, October 15, 2013

Chiropractic Help for Autism.

(picture from newsletter from my chiropractor) I have mentioned in the past that our family has gone to a chiropractor for years. We took our boys when they were young. When Will came to live with us (at 2 1/2 years old), he had little strength on his right side - using his arm very little and walked favoring his left side. It was our understanding that he did not learn how to walk until about the age of 1 year. 2 out of 3 foster homes had him staying either in a highchair or in a playpen whenever the social worker saw him. Anyway - I took him one day asking Dr. Gibson if he could help, which of course he said 'yes'. If my memory serves (depends on the day and how much coffee I have consumed): after examining Will and running some type of test which measured the electrical impluses off his spine, he started doing various adjustments on his back and neck. We took him about once a week and after close to 2 months, there was a change. There was more strenght, he would use his right side more, walking was more balanced. To this day, we continue to go: all 5 of us, my mom use to go and my father-in-law, 92 years old, goes. Which brings me to the article in the newsletter I received. It was from the September issue of the Annals of Vertebral Subluxation Research (I tried to get on their site but could not - think you need to subscribe and what I could read -- well, I am not a medical person and I could only read so much). It was called "Chiropractic Helps Child with Autism, Acid Reflux, Headache, Seizures, and Vomiting" and it follows a 35 month old girl on the autism spectrum. As it states her symptoms included 'headaches, epilepsy, behavioral and developmental delay, acid reflux, sleep disturbances, and vomiting'. Her history: 'she was born prematurely at 28 weeks, weighing 2 pounds, 5 ounces. Also, she was in the NICU for six weeks and came home on oxygen with apnea sleep monitors. Her primary symptom was headaches which, according to the girl's father, caused her to rub her head often as if in pain. Seven months prior to the chiropractic visit, the girl had been diagnosed with autism with the associated problems of this condition. Two months before the chiropractic care, the girl had also suffered a seizure'. So the chiropractor started her treatments and according to the authors of the article, after 10 days there was a decrease in headaches, her posture improved, behavior mellowed, and she was eating better. 24 days into treatment, she was maintaining better eye contact and not vomiting as much. 240 days after the start, she was more verbal and most of her original symptoms were disappearing. Finally the authors state that the girl's mother said her daughter was, "...off all of her medications, she’s making improvements with her occupational therapists, speech therapists, even her pre-school teachers are noticing a big difference. I'm getting my little girl back – look, she’s making eye contact with me, and even starting to say a few words! She'll use her hands to do the motions to the Itsy Bitsy Spider song!" I can't state that going to a chiroprator will solve all your problems, but I have seen first hand how it helped Will physically. Maybe it has helped him to come out of his shell too but we have always kept him with us, in public, making sure he reaches out to others. I do think it is worth talking to one!!! Here is a link to our chiropractor's office with a variety of articles relating to autism and chiropractic care.

Friday, October 11, 2013

Buying Toys for those with a Disability.

Quite by accident, I found a post on Head Start, An Office of the Administration for Children & Families Early Childhood Learning
& Knowledge Center, addressing the purchase of appropriate toys for children with disabilities. While we all think before buying, sometimes those who are not that familiar on a day-to-day basis with our kids, might think they are purchasing a worthwhile item. Hate to remind people but YES the holidays are coming (Willie reminds us everyday about Christmas and his birthday - 4 days after Christmas and brings out his 'wishlist book' probably 3" thick with lots of pictures he prints off the computer. He already has half of them in his possesion but likes to copy them).
It may be a good idea to help them choose the appropriate gift. Here are the 'Top 10 Things to Consider': 1 - Multisensory appeal: Does the toy respond with lights, sounds, or movement? Are there contrasting colors? Does it have a scent? Is there texture? 2 - Method of activation: Will the toy provide a challenge without frustration? What is the force required to activate? What are the number and difficulty of steps needed to start? 3 - Where toy will be used: Can the toy be used in a variety of positions such as side-lying or on a wheelchair tray? Will the toy be easy to store? Is there space in the home? 4 - Opportunities for success: Can play be open-ended with no definite right or wrong way? Is it adaptable to your child's individual style, ability and pace? 5 - Current popularity: Is it a toy most any child would like? Does it tie-in with other activities like T.V., movies, books, clothing, etc? 6 - Self-expression: Does the toy allow for creativity, uniqueness, and choice-making? Will it give the child experience with a variety of media? 7 - Adjustability: Does it have adjustable height, sound volume, speed, level of difficulty? 8 - Child's individual characteristics: Does the toy provide activities that reflect both developmental and chronological ages? Does it reflect the child's interests and age? 9 - Safety and durability: Consider the child's size and strength in relation to the toy's durability. Are the toy and its parts sized appropriately? Does the toy have moisture resistance? Can it be washed and cleaned? 10 - Potential for interaction: Will the child be an active participant during use? Will the toy encourage social engagement with others? While these are guidelines, we can always hope that maybe a gift that may make him or her push themselves a little bit more -- communicate more, offer more social interaction, be of interest visually. It may take awhile but sometimes they do warm up to it after watching others play. See post here. "Ball" picture from Head Start site.

Home Care Help for Those with Autism.

(picture from Best Home Care site). Normally home health care is thought about in the sense of taking care of elderly parents or someone just home from the hospital. Best Home Care offers the idea of help from a Personal Care Assistant (PCA) for help with someone with autism. Autism demonstrates itself in a variety of ways - 'a lack of empathy, problems with eye contact and communication, a delayed ability to speak, echolalia, a strong desire for routine and an obsession with a particular subject. Autistic people may also engage in “stimming,” or self-stimulating, repetitive behaviors such as hand-flapping or rocking'. As with care for other folks, a PCA will help with daily living routines making sure they take their meds, eat, bath, etc. They also are trained in dealing with tantrums and other behavioral issues. While helping the individual autistic person with his or her needs, it may be possible for the PCA to help with meals, chores or taking the person out into the community. Two great points brought to light: 'Since autistic individuals often seek out predictability and routine, being able to stay in his or her home environment may be more beneficial than moving to a new setting, such as group home. In-home care also helps the autistic person’s family, by providing more stability and helping family members avoid excessive stress or burn-out.' See post here. See information on PCAs here.

Sunday, October 6, 2013

Patience Pays Off -- Watch This Cute Story Unfold!

From a post on Life News:
Ok - convince me you are not smiling right now just looking at this picture!!! Yes it is a Labrador trying to befriend a Down Syndrome little boy. Himalaya, the lab, is caught on video trying to get up close and cuddly with 3 year old, Hernan. The budding friendship takes place in Buenos Aires. Hernan's mom, in the post, says her son does not open up to people much. But Himalaya has other ideas and does not take 'no' for an answer. The video takes about 3 - 4 minutes but it is worth watching Hernan finally giving in to Himalaya giving him a hug for a few seconds. Tell me there isn't something special about a special needs child - some adults can't see it but in some cases, animals have no problem sensing their 'specialness' and can get them to open up. View post and video here.


Department of Rehabilitative Services:

Updating the family calender, I am reminded of Will's IEP/transition meeting coming up in January. Seeing that, I have to go through his file of 'stuff' I have already started to apply for and/or need to update - to bring with me so I can find out what the next steps will be. He leaves school this next December - on to bigger and better things.

I find in the handouts from the transition seminar, information on our Office of Rehabilitative Services (ORS). The national website is under the Department of Education. The office offers career planning for students with disabilities, they help prepare eligible people to prepare for and obtain employment. Each person is assigned a Vocational Rehabilitation (VR) counselor who helps the individual and his/her family to make good choices in their planning.

The VR counselor offers assistance in a variety of ways: *providing career information
*assisting in choosing employment goals, services, and training
*develops an Individualized Plan for Employment (IPE)
*provides information on programs and services for transitioning
*helps with guidance and counseling
*vocational assessment & community job trials
*on-the-job training

You need to apply to ORS. Ask your child's teacher who from ORS is assigned to your school and a parent or guardian MUST attend the meeting if the child is under 18 years old. If the counselor determines that a vocational assessment is needed, arrangements may be made through school and done during school hours. The results will be shared with family, school personnel, an evaluation team and the counselor - all can help the student develop career goals.
ORS may even help pay for post-secondary training, certification, license, or college degree, books, supplies, specialized tools - you get the picture. It may even go as far as helping to pay for bus transportation and gas. Assistive technology can possibly be included or software if needed for a computer to complete assignments.

ORS offers a lot of help and direction for those getting ready to transition out into the work world. Make sure you contact your local office or school for any information you may need.

Michael Garcia

Three Cheers for Michael Garcia!!!

(Milo's picture from 'Today Moms' website)

I came across a story on "Today Moms" about a waiter in a restaurant in Texas who defended a 5 year old boy with Downs Syndrome. Milo was at the restaurant with his family, who are regulars, and was showing off his new words and telling Michael Garcia, the waiter, about his birthday. At another table nearby was another family who are also regulars. They asked to move away from Milo's family and a man sitting there said 'special needs children need to be special somewhere else'. To which Michael replied 'I am not going to be able to serve you Sir.' YES!! Good for you!!! More people should be like you Michael.

Michael was afraid he would lose his job but more people have been turning up at the restaurant to shake his hand. There have been lots of postings on the restaurant's Facebook page. The family has been going there for so long, Milo and Michael even have a special way of going to their table when the family arrives -- Michael always carried Milo.

As many other families, they have had their share of stares and parents pulling their children away from Milo when out, like on a playground. We too had something similar happen when Will was young. He was about 4 and we went to a family type of restaurant, sat down next to a party of 4-5. Will, who is autistic, is non-verbal and back then had no way to communicate except to make a noise (AH-AH or similar) when he wanted something. A woman at that table told us we should leave him at home and that she too had special needs children and they would never act that way when out. My mother got on her 'grandmother high horse' and told that woman if she didn't like the noise, feel free to move to another table on the other side of the restaurant - her grandson is fine and that's the only way he can express himself whether she liked it or not!! The wait staff kept on serving us and was attentive to Will. We're going back probably 16 years ago, so keep doing what they were doing was probably comparable to a member of the waitstaff standing up to a customer.

They stayed put but were not happy and the evil looks continued.

We can only hope that this ignorance will someday disappear. As Milo's mom puts it “Maybe next time they’ll think twice before they utter those words or say something derogatory about somebody else.”

iPad Communication

I attended an iPad workshop that Will's teacher had told me about. It was given by a local company, Tech Access, that evaluates and gives special needs students communication devices to use while in school and to take home during this time as well. There were only a few of us there but this seems to be a useful tool for those specializing in Speech Therapy and are teacher assistants working with special needs students (one other person was a parent).

While the instructor went over all the basics of how to set it, use it, make folders, delete icons, etc., we did touch upon some apps that are good for special needs. Going through the App Store can take time - as he said - you really have to be specific or you get thousands of results. There are free apps and those with a small fee, as well as those that can cost upwards to $200.00 (US dollars). The program we use for Willie is called 'Assistive Chat' which I think was about $35.oo US dollars. Others at the workshop were using 'Proloquo2Go' which runs about $200.00 It depends on what your child can do -- "Assistive Chat" is more for someone who can type and knows words; Prologuo has pictures that you can use along with words. One way to help with this dilemma is to go to AppShopper. This is NOT connected to Apple. There you will find a lot of apps for iPads and iPhones as well as Macs, along with their price changes (if applicable), new apps, app updates. Check it out - great site!! One drawback, even on the 'iTunes store', is that the majority of apps are for younger children, not high school. Even though he does work like a younger student, the pictures and manner of presentation is too young for him. So if you have a pre-schooler or elementary aged child -- you are good to go!!

One good one for those who like to 'see' the results of an action -- 'Songify'. Speak or breath into your Android device and the app will turn the action into a song.

Also, he mentioned a website called 'Moms with Apps'. While this site will include all sorts of apps for all varieties of skills and needs, it also invites app developers to share their programs -- see "App Friday". I checked out 'App Resources for Special Needs', went to 'Mashable article on iPads and disabilities' and not only found apps for children but a couple of them for seniors: one memory practice one that was created by someone who's mom has Alzheimer's and two for medication reminders (though one was NOT available in the US store). You can check out a previous post regarding 'Tech Items for Seniors' that had ideas from 'Senior Savvy' regarding the same.

Of course YouTube has everything!!! The instructor was talking about different types of a stylus pen for people who cannot type and have a hard time holding onto a pen - type device. Of course you can buy one but you can also make your own. Check out a variety of YouTube videos to make one. TechAccess also has instructions.

Spend some time in the 'iTunes store' and the 'AppShopper'. Check with your child's teacher and speech therapist so see what will be good. Find a workshop in your area. Time well spent!

Will's New iPad for Communicating.

We picked up an iPad for Will this weekend and downloaded 'Assistive Chat' for him as his communication program. There were 3 choices for a voice output, so I played each for him and let him choose - one was male, one female and one 'mechanical' for lack of a better word: Ryan, Kenny and Heather. He chose Ryan.

There were choices for the voice output to 'speak' every letter, word or sentence when done - we chose the latter. As a person types, there are predictive words that come up, so you really do not need to spell the entire word - just tap the appropriate tab.

As per usual, Will has attempted NOT to use it - this is his usual M.O. When something is new, he puts off using it, especially when he feels there is no need. "Mom knows what I am talking about!", I am sure this goes through his head - which I do but a lot of people who don't know Will's version of sign, have no clue what he is saying and THIS is what he needs to be prepared for.

I think once he gets to school and can see the other ones that are being used, he'll get into it. He is also more apt to follow his teacher's constant request to use it, rather than ours.

Getting Excited About Communicating the 'i' Way.

Today we had our transition meeting regarding how things stand for Will - what we need to do, who we need to contact, etc., since he will be done with school in December of this year. It seems we are on-track, no additional school testing needs to be done, unless some social service agency needs it. Right now, we wait to hear from one agency; we are not sure if we need it since he has been given a case worker at another one similar in mission. Vocational assessment will probably be done in the summer.

Anyway - I spoke with his teacher and asked about an iPad for Will to use instead of his current communication device. (See older post - "Communication Devices"). She was all for it; he had experimented with another student's a short time ago and Kerry said it went well - he learned it quickly and handled the touch screen keyboard nicely. So we will be getting one soon.
(picture of Will's teacher's book)

Kerry also gave me a book to look at in the meantime. I figured we would be going with the app "Assistive Chat" but "Sentence & Question Builder" looked good too, maybe a nice sister app. The book she gave me is called "Apps for Autism" by Lois Jean Brady M.A.,CCC-SLP, , 2011 by Future Horizons. You buy the apps from the 'iTunes' store. The book has over 200 apps that help improve communication, behavior, social skills, etc.

(Steve Jobs picture from iPad Wikipedia)

The book covers A LOT of information. Lois discusses how technology is changing so fast. As she puts it: 'New mobile technologies for people with autism are creating new opportunities at an exponential rate. The message is that we can create tools that can make profound differences in the trajectory of people's lives and in education in general'. 'Thank you Apple! Finally, devices that support communication, scheduling, academics, social interactions, video modeling, and leisure time are wrapped up in hand-held, super, cool packages. Individuals who cannot use a mouse or keyboard can use the iPad, iPhone, and iPod touch because there is no disconnect between the screen and the keyboard/mouse.' As she also states, there is a big difference in price between the older communication devices (which can run $8 - 10,000 dollars and take months to come in after ordering) and the new Apple products that run more or less around $500 and have apps that you download and use right away. Yes - there may be a charge for some apps, some are FREE. Still, it's a whole lot LESS money. I would suggest you speak with your child's teacher and speech/language person to discuss good options.


I just want to mention some of the categories in the book and some of the apps. The book gives current app prices (prices may change over time) and gives website addresses for each app so you can look it up. I checked out a few. One I could not find, nothing came up, but the others looked great.

There are 12 categories in the book, each with plenty of apps to choose from. I'll just list a few -- apps to get the word(s) out; sign language; articulation; concept development; hygiene & pre-vocational; graphic organizers & visual supports. Apps are: autism shapes, small talk letters, numbers, colors; idress for weather; uzu; body language; is that glutten free?.

I highly suggest you try to find the book ($29.95 US if you want to buy it). I think Kerry said you can find all the apps on the iTunes store if you have an account and they constantly add more. I can't wait to try Will's!!! Our work is set out for us this weekend. I would love to hear from anyone out there using these already - give me/us your feedback -- please!!!!!

Robots help kids with autism.

Robots Help Children with Autism:
There is a school in England using robots to help reach their students with autism. The robots vary in style but researchers are finding that over time, the boys and girls are opening up. The researchers find that the children feel comfortable around these robots because they are predictable since autistic people have a hard time understanding facial expressions. These children also have a hard time with touching - some of the robots are covered in silicone patches to feel like skin. There is another version looking more like the traditional robot that moves and dances. Researchers are also hoping to increase communication and social skills.
In the case of the robots looking like children, some of the students are imitating its responses. A scientist controls the robot and will make it laugh, frown, blink, or wave its arms. Some children are starting to react to its movements by saying what it is doing - like 'happy' or 'sad' when they recognize a facial expression. As well as things are going, they are warning that parents should not rely on these robots totally since autistic people still have to deal with the real world. Also there needs to be more studies on how this will work over time.You can read the following stories from a variety of locations regarding this great idea.Now Dancing Robots to Teach Autistic KidsRobots'>http://www.msnbc.msn.com/id/41967936/ns/health-mental_health/t/robot-teaches-autistic-kids-interact/">Robots Teach Autistic Kids to InteractRobot'>http://www.huffingtonpost.com/2011/03/09/robot-helps-autistic-kids_n_833321.html">Robot Helps Autistic Kids

Transition and work

As I continue to do the paperwork and contact the appropriate agencies for help, I am also looking at agencies that help find work. There are several. There are companies that hire people with disabilities; my list is for those looking for something else.

I also think of an agency that interviews the person, their family and friends to see what he/she might be interested in doing on their own. I like that idea. This started me thinking, my husband would say 'look out' or 'I could smell that smoke', about possible types of jobs that could be considered a business that they could do, work from home or a family business. I understand they cannot make a lot of money due to SSI regulations so it would be part-time/on a small scale. These can also be done using a mentor. There are agencies that have folks who want to mentor a challenged child/adult or use a Best Buddies person.

Here are some possibilities - just ideas I toss around in my head especially after I leave a place or talk to someone who owns a business:

*bake cookies or cakes to sell to friends or family (this one came up during a seminar - someone's son was doing it and loved it);
*walk a dog/take care of a pet for neighbors or family;
*work with a local small business -- we go to a local car repair business, I think a small 'stand' could be set up selling coffee and snacks, on a Saturday for instance. After visiting mom at the nursing home and hospital, how about working with a local gift shop setting up a place on the weekends selling some items or take some items from the hospital gift shop around to some floors and help sell. The young businessman or woman keeps a percentage of what they sell. At nursing homes, they can sell on weekends or family nights;
*collect scrap metal, cans and/or bottles and sell them. They would be helping the environment as well;
*if they are artistic do some art work and place it in local businesses;
**this one I had started trying to work out a plan to do for Will and maybe a few others in his group (or for his work group in school) but due to family illnesses and my work gearing up I did not get far. I still think it is viable. The idea came from my mother actually -- she was commenting on how she has a hard time getting to the cemetery to put flowers on family graves. So what about a business where people can go for them? They advertise in churches, funeral homes; they charge a straight fee to order either fresh or artificial flowers or a flag; who goes can clean the stone a bit and maybe say a prayer. Take a picture to show their client what it looks like.