April 2015 – Very Eventful!

April was a very special and interesting month, as so many things occurred at once.  The first event might overshadow the others, but they were all equally important to Daniel.

#1 – Daniel was a guest speaker at the Launchability Annual Fundraiser 2015 with Dana Carvey as the Entertainment for the Evening and Jody Dean (KLUV) as the Master of Ceremonies.   Daniel’s material for his speech was late in being turned in (his heavy schedule these days), so much of his speech was written for him and when reviewed it just didn’t have his signature.  So very carefully, and for many hours on the day of the speech, Daniel re-sculpted the script so as not to deviate too far from the original, but to make it his own.

He wanted his delivery to be perfect.   To be quite honest, we were both concerned about two things going into this event.  #1 – That the opening joke might not be seen as a joke, #2 – That Daniel’s need for Launchability might not come across as he can seem so ‘normal’ at times.

Come time for his ‘dress rehearsal’, Daniel wasn’t nervous about speaking, only about being perfect.  The venue didn’t faze him, the bright lights were not a problem, he just wanted to be able to deliver his speech from memory, not having to refer to his script too much.

Then when Jody Dean was introducing Daniel, he struggled with the pronunciation of his last name (who doesn’t) and called him David at one point.   However, what we saw as an oh-no moment, Daniel seized as a moment to capitalize upon.   He walks boldly to the podium and announces “Hi, I’m DANIEL FIACCONE”… in such a way that everyone knew he was poking fun and the levity carried him into his opening joke with flare and the audience’s acceptance.   The audience was so responsive and they laughed “with” Daniel as he shared his struggles and warmed to his need for Launchabilities’ services.   I couldn’t help but notice two young ladies seated in front of me, as they listened to Daniel.  He never lost their attention and they seemed genuinely interested in his story.

I kept looking at my mother seated next to me and mouthing ‘he is doing great!”   When Daniel concluded his speech, I watched in amazement as people began to stand and applaud, pretty quickly the whole audience was standing for him.  It was an awesome moment for anyone, but for someone who has struggled for acceptance for most of his 32 yrs – this was an AWESOME moment.   After Daniel’s coach Amy spoke, she invited people to give Daniel a hand and they stood again.   I lost it!   Daniel just grinned, and then with impishly dramatic flair bowed to the audience… which they loved.  Dana Carvey ribbed him backstage about receiving 2 standing ovations.

The only somewhat sad moment was realizing that I was not recording it… then I saw my brother had remembered, only to find out later that his camera had malfunctioned and there was no recording.   I’m still hoping that someone recorded the evening, but even Launchability is searching for that someone!  Too bad, it was worth sharing and replaying.

#2 – As I said in the beginning, many things happened this week – the event shared was important, but Daniel was just as excited about events at work and at NonPariel.    You see, he thought his job was in danger and before this speech, he found out that his supervisors had determined that the productivity levels for his group were not attainable, and they reset Daniel and his co-worker back to ‘normal’ status (as opposed to “warning levels”) and are re-evaluating the productivity numbers for his area.  Then, Daniel received a glowing review from his boss (passionate about his work, respected by his peers, helpful to others, quick learner) as well as a raise!  Oh yea!  Daniel also reported that he and his co-worker have moved beyond some major personal conflicts as well.

#3 – Daniel completed his coding class at NonPariel and was ready to move on to his next level of training (advanced coding) and was concerned about a scheduling conflict between NP & his job at Neiman Marcus Direct.  However, NP again worked to make things possible for Daniel to study and work, but rearranging class times for him.  Thanks NP.

In recent months, Daniel has experienced some major successes in his life.  He has also gained some direction for his future (he loves coding).  He feels successful at work which pays for him to study at NP, so life is definitely moving in the right direction.

Shared from A very grateful Mother….

Updates

Things have not been as smooth as we had hoped with Daniel’s employment and training.  He struggled to adapt, but he is doing so.  His job coach from Launchability has helped him work thru some difficulties at work.  He is training for another position as he was not speedy enough for the first.  NMD is working hard to keep him employed and we are grateful.  Daniel completed his evaluation period at non-Pariel and was accepted.  Typical Daniel, he is still challenging anything he doesn’t understand.  He has made a good friend and is starting to open the door to others.

As if Daniel didn’t have enough on his plate, he volunteered to be part of a study on Asperger’s Syndrome.  He completed his service by undergoing an hour long MRI on Friday.  I’m not sure I could have handled an hour in an MRI machine.  I hope his efforts and the efforts of other volunteers will be part of something that helps with more awareness of Aspies and their unique minds.

Adjusting to running our business without Daniel has been quite challenging.  His ability to remember almost everything and keep the route running efficiently has been impossible for my husband and I to match, but we have hired an experienced helper – so it should get better.

I decided to give up my leadership role in the Parents of Adults with Asperger Syndrome. I started off holding weekly meetings in the four quadrants of DFW, but after the first month, I never knew for sure if anyone was going to come.  People often signed up and then didn’t show up, and time is too great a commodity at this stage in my life, so I have offered to stay in touch and help where I can by email, text or phone.

For Thanksgiving, we are hosting two or more of the non-Pariel “kids” that don’t have family in town.   Creating a menu for a group of Aspies is challenging…suffice it to say that it won’t be a traditional Turkey dinnner.

Whirlwind of Activities and Changes

After waiting two years for any type of assistance or program, nonPareil and Launchability both contacted Daniel for program placement at the same time (June).  Daniel started with nonPareil in July and in August, Launchability helped him land a position with Neiman Marcus Direct.  His new position at NMD is 2nd shift allowing him to continue pursuing NP during the day (currently 3x a week for an hour plus individual study time).  

Daniel is very exciting with his training at NP, finding game production to be very, very interesting.   He is also very happy with his work environment at NMD (except that he would rather sort cookies or video games than women’s accessories! LOL!).   He says that his co-workers and supervisors at NMD are very friendly and helpful.

With his position at NMD, Daniel will work his way fairly quickly into being self-supporting.  After 60 days, he will start receiving benefits (health & more).

With his new commitments, Daniel has had to turn back the daily running of the Voortman Cookie route to his Dad and I.  So we are working out our new routines as well.  However, with Daniel becoming more settled, our life seems to be a bit gentler.

Supplemental Security Income for ASD Adults

Definitions of Childhood Disability for Supplemental Security Income
The Social Security Administration defines different disability categories that can be found in their publication called Disability Evaluation under Social Security, sometimes referred to as the Blue Book. Warning: the Social Security Administration does not use Person First language. Autism and autism spectrum disorders are listed as 112.10 Autistic Disorder and Other Pervasive Developmental Disorders under Mental Disorders. Children must meet the A and B criteria.
A. Medically documented findings of the following:
1. For autistic disorder, all of the following:
a. Qualitative deficits in the development of reciprocal social interaction; and
b. Qualitative deficits in verbal and nonverbal communication and in imaginative activity; and
c. Markedly restricted repertoire of activities and interests;
or
2. For other pervasive developmental disabilities, both of the following:
a. Qualitative deficits in the development of reciprocal social interaction; and
b. Qualitative deficits in verbal and nonverbal communication and in imaginative activity;
and
B. Impairment-related functional limitations are dependent on the child’s age and must be documented medically. The functional restrictions in paragraph B must be the result of the autistic disorder or pervasive developmental disability. A child aged 1 to 3 years would meet criteria if their communication or cognition or gross or fine motor development or social functioning is no more than one-half of the child’s chronological age. For older children ages three to 18 years, they must have a two areas of marked impairment in:
a. age appropriate cognitive/communicative function
b. age appropriate social functioning
c. age appropriate personal functioning
d. difficulties in maintaining concentration, persistence or pace
The above functional limitations for older children should be documented by medical sources as well as reports from parents and others who know the child well. Parents can write a letter describing the impact of their child’s disability on these areas. Information from teachers, friends, and others who interact with the child regularly can be valuable in providing a picture of the child’s functioning in his or her daily life. When disability for a child is determined impairments in acquiring and using information, attending and completing tasks, interacting and relating with others, moving about and manipulating objects, caring for self, and heath and physical well-being are all considered. Other developmental disabilities may be found online in the Blue Book under Childhood Listings (Part B), 112.00 Mental Disorders.
Adult Income and Resource Eligibility for Supplemental Security Income
When children with disabilities who have been receiving SSI and/or RSDI turn 18 years old they must apply again for these programs as an adult. If the child had not been eligible he or she might be eligible for SSI as an adult. This is because different medical criteria apply and income and resources are counted differently for adults. One difference is that the adult must meet the disability criteria as well as not be able to work at a substantial level which is defined in 2011 as the ability to make more than $1,000 a month.
In most instances the young adult is considered a household of one. This means that only his or her income and resources are counted. However if this young adult is living with family or others and is not able to pay this or her fair share of living expenses the young person could have a reduction of one-third in their SSI amount as the living expenses are considered subsidized. Income from a spouse is also counted toward total income. With earned income, every month the first $85 is disregarded and what remains decreases the SSI amount by $1 for every $2 earned. Unearned income such as a pension or social security benefits received on a deceased, retired or disabled parent have a disregard of $20 a month and then decrease the SSI amount $1 for $1. The resource limit for an individual is $2,000 and $3,000 for a couple.
Definitions of Adult Disability for Supplemental Security Income
Adult definitions of disability are also found in Disability Evaluation under Social Security (aka the Blue Book) under the Mental Disorders section. The adult section is labeled 12.10 Autistic Disorder and Other Pervasive Developmental Disorders. Again both the A and B criteria must be met.
A. Medically documented findings of the following:
1. For autistic disorder, all of the following:
a. Qualitative deficits in reciprocal social interaction; and
b. Qualitative deficits in verbal and nonverbal communication and in imaginative activity; and
c. Markedly restricted repertoire of activities and interests;
or
2. For other pervasive developmental disabilities, both of the following:
a. Qualitative deficits in the development of reciprocal social interaction; and
b. Qualitative deficits in verbal and nonverbal communication and in imaginative activity;
and
B. Resulting in two of the following:
Marked restriction of activities of daily living; or
Marked difficulties in maintaining social functioning; or
Marked difficulties in maintaining concentration, persistence, or pace; or
Repeated episodes of decompensation, each of extended duration
Remember while a medical diagnosis is neceSSAry, parents, teachers, friends and others can provide important information about the limitations on the person’s ability to handle daily living activities and social interactions. Giving concrete examples of where the person struggles help give the disability determiner a picture that cannot be found in a medical document or psychological evaluation.
– See more at: http://autismnow.org/funding-and-public-policy/social-security-benefits/#sthash.W2F9FOyw.dpuf

What to do if you have an adult child with ASD (Autism Spectrum Disorder)?

#1 – Most important! Your ASD is at best 2/3 of his/her physical age in emotional/social maturity. A 20 yr old is actually just going through their early teens. A 30 yr old is just starting his/her early adulthood years. It requires a lot of patience and a very thick skin (as you and your child will be judged by others, even those close to you will expect your child to ‘act their age’). And if your child is large in stature, it will be even worse… small adults can get by with their childish behaviors longer than the big guys.

#2 – Get financial assistance. It is very expensive to provide for an adult child – so
Apply for Social Security Supplemental Income (paid to your child)
A) have official diagnosis (psych eval from doctor specializing in ASD)
B) document struggles with social and educational life
C) document failed attempts at employment
D) Report your child’s portion of expenses as if he/she were an adult paying their own way. If you are a family of 4, then your adult child should be responsible for 1/4 of all household expenses, plus their transportation costs…even if you are covering those costs for them at this time. Not reporting these expenses will greatly reduce your child’s benefits.
I know you can support your child or think you should be able to, but this is an ADULT child with expenses – you are doing this to protect them, not because you are looking for a handout. This money will help you to provide for your adult child without breaking your bank. Receiving SSI will also provide medical care for your adult child (Medicaid)…a major expense after age 26.

#3 – Stop worrying about your adult child’s social life. Once they become involved in a training or educational program they will meet others and most likely find a friend. Your first priority should be financial stability. Having a purpose in life (job, volunteerism, training) will allow your child to feel a sense of worth that will help them make a friend or two.

#4 – Find a support group because no one in your family or outside of it will understand that your adult child ‘is doing the best that they can’ and so are you.

#5 – Go to DARS (Department of Assistive & Rehabilitative Services)… ask specifically for someone that is trained in ASD or you will be very disappointed. Ask others in your support group for referrals. They can help you with training, education and job placement.

#6 – Seek out special employment programs such as Launchability in Dallas that provide on the job training and support. Goodwill also has programs.

#7 – Never give up hope. With support, encouragement, and a great deal of patience, your adult child will continue to mature. Remember the 2/3 rule.

#8 – Have expectations…keep them reasonable, but avoid treating your adult ASD as a child. Be as blunt with them as they are with you, be honest, reasonable and strong.

complicated

That one word has always best described my daily life. Currently, we are in the middle of a major remodel, Daniel has started classes at nonPareil in Plano, and my husband’s Mom is in rehab (her health has been failing for a long time… age and lung disease); then, lets add the parents support group that I’ve been trying to keep going, visiting a different dfw site each week. I know some of this I bring upon myself, but then some of my complications just naturally come with being a wife, mother, friend, sister, and so on.

Life never lets you tackle one obstacle and then move on… it just seems to increase as we get older. I thought retirement was supposed to mean a simpler life! HA!

My 60th birthday is approaching and I’m just hoping to have a new shower to enjoy.. the rest of the bathroom to be completed soon after, I hope. This is what happens when you buy a HUD foreclosure and the inspectors won’t go under the house (crawlspace too low). A few months after moving in, the floors start collapsing from rotten floor joists. We are rebuilding the substructure and the flooring one room at a time….hence the new bathrooms. I estimate about another 12 months of diy work (if the money holds out).

Daniel (my Aspergian son) is 30 days into his 90 trial period at nonPareil. He loves the work, struggles with the meetings…but is working on doing his best all round. He has a plan and a goal and I know he can do it. At the same time, Launchability is working with him to find a 2nd shift position so that he can pay his own way.

When Daniel finds that new position, I will be in the position of deciding what to do with a cookie route that Gene and I would struggle to run by ourselves (bad knees, bad memory, etc..). But I’ll cross that bridge when I get there.

Oh and I forgot – the family is taking our once a year vacation/cruise in September and I’m trying to get that organized. Plus, my youngest son stationed with the Coast Guard in San Pedro California has invited us out to see their new place in October – so air tickets, park reservations, etc… Hopefully we will have the energy to enjoy and the money to pay for it all! I think I may hide away for Christmas!

I’ve got to lose some weight, starting eating better, and take care of myself so that I can live long enough to enjoy retirement!

Referrals List

From the meetings of Parents of High Functioning Adults with ASD, I am creating a list of referrals for assistance by type and by location.  Please let me know if you have anything/anyone to add. I will publish the list to our meetup.com “pages” and then also on this website under

Meeting Updates

Bear with me, I’m a little overwhelmed this week with my todos.   I have some great notes from the last two meetings that I will be sharing via post over the weekend.   Thanks to everyone for your willingness to contribution to building future hope for our children.

Autistic Spectrum Disorder (ASD) & Social Communication Disorder

There was a recent discussion on the confusion as to terminology:  HFA Autism vs Asperger’s Syndrome.   Personally, I thought that HFA (High Functioning Autism) was just another term for Asperger’s Syndrome (now that it was considered part of ASD, Autistic Spectrum Disorder).   Today I read about “SCD” a new non-ASD diagnosis, implemented in 2013.

ASD – is an umbrella term that is supposed to include  Autistic Disorder (Autism), Asperger Syndrome, Childhood Disintegrative disorder, and Pervasive Developmental Disorder (PDD-NOS).  (quoted from:   http://www.autismspeaks.org/what-autism

An online survey by Autism Speaks has already drawn accounts of children losing autism services after their ASD diagnosis was changed to SCD. Social communication disorder involves problems with social and communication skills, but without the repetitive behaviors and restricted interests typical of autism.  (quoted from http://www.autismspeaks.org/science/science-news/cdc-evaluates-how-dsm-5-may-affect-estimated-autism-prevalence)

I admit, I’m still confused.