April 3, 2014

World Autism Awareness Day Part Two

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , at 11:22 am by autismmommytherapist

Zach in a Bath 014

Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism.  This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey.  As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.)  There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.

 

The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country.  It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.)  I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.

 

But as I mentioned before, my heart sings for my son.

 

Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood.  I admit, it was a thrill to see him both online (and imagine this) in hard print as well.  Quite frankly a few tears were shed yesterday, from both me and my husband too.

 

But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)

 

I’m writing to you today about hope, and perserverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.

 

Ten years ago my son was diagnosed with severe autism.  He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.

 

Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.

 

Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.

 

Two days ago he worked diligently (and most importantly,  joyfully) with his teacher for his coveted bagel chips, but mostly for the love of  learning.

 

Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.

 

Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.

 

Ten years ago I thought I’d never see him smile.

 

Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.

 

Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook.  There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.

 

As I mentioned before, I’m a proud momma of an autistic child.

 

But the beautiful part of all this is sometimes I need a not-so-gentle reminder to celebrate how far we’ve come, how our family was forged in fire, and now revels predominantly in peace.  My son is happy.  He loves his life.

 

My son with severe autism loves his life.

 

And nothing in the world could make me more proud.

http://www.app.com/article/20140401/NJNEWS15/304010044/Autism-advocates-urge-more-funding?nclick_che…

 

 

 

 

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March 24, 2014

A Home of His Own

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , , , , at 11:34 am by autismmommytherapist

Disney and Halloween 2013 015

A few months ago I had the opportunity to attend Autism New Jersey’s annual conference in Atlantic City (no, no time to gamble that day).  I happened to choose some very good sessions at the event, and was fortunate enough to hear Tom Toronto of the Bergen County United Way speak about a special-needs housing project known as Airmount Woods.

The nine unit residence is the first in the state to be designed to exclusively house adults with autism, and came about as a collaboration between Ramsey Housing Inc., the Bergen County United Way, and the Madeline Corporation. Staff from New Horizons in Autism will be working there around the clock.

The residence has nine bedrooms, all of which open into a common area. Since it was developed with input from the parents of the prospective residents the facility even includes a sensory room, which serves both as an outlet for calming the residents when they need it, and also as a recreation area.

Mr. Toronto was kind enough to bring both the plans and pictures of the housing complex that day, and I have to say I was impressed both with the attractiveness of the facility and the many ways the builders had factored in the residents’ needs as they constructed it. It was beautiful, functional, and safe, and all involved parties are hoping to open several more facilities in north Jersey in the years to come.

Frankly, it looked like a slice of heaven.

There are many issues within the autism community which are controversial, and where our adult children should live after they complete their schooling is one of them. I have a number of friends with autistic children over the age of eighteen, and I’ve seen them handle the issue of housing in a myriad of ways. Some have opted for the group home route, although in New Jersey there is an extremely long wait for an opening, so that isn’t always an option for parents.

I’ve also seen some families where one parent quits their job and stays home to care for their child. Last, and infrequently, I’ve seen families who can afford in-home care for their child. All of these options are fraught with difficulty. Any parent who chooses the group home option has to hope that their child is treated with respect and dignity, and remains safe.

Relinquishing employment to stay home and care for a child means a loss of income and embracing the role of 24/7 caretaker for decades. Those families who opt for in-home care are at the mercy of their child’s caregivers, for if the caregivers are sick or injured parents may be unable to find a sitter for their twenty-seven-year-old child so they can go to work. Truly, there are no easy solutions for families whose children will never live independently.

Trust me, I think about this issue a lot. If there were an easy answer I would have discovered it when I should have been sleeping.

When I think about the ramifications autism has had on this family (and yes, I think about that a lot too,) where Justin will live as an adult is one I come back to time and time again. I admit that contemplating where my eldest child will reside conjures up conflicting emotions within me, and is a complicated subject.

Justin adores his house, his bedroom, and having access to the multitude of toys he’s played with almost his entire life. He loves to go out for an hour or so but then is eager to come back, content to idle away the hours within the confines of his beloved home. I’d have to say if I chose to label him he’d be a homebody, might be perfectly happy living with us forever.

Of course the fact that his parents will die eventually is a slight wrinkle in that plan.

When I embarked on this parenthood journey I never anticipated I’d be responsible for one of my progeny for about fifty years (if I’m lucky, I was one of those people who had kids late.)  I’m fairly certain there will come a time when the only people I’ll want to care for are me and my husband, and I’m sure there will come a time when that will prove impossible as well. My youngest loves his brother to death, but I’ve seen the restrictions imposed on this family due to the severity of Justin’s autism, and I don’t want those limits imposed on Justin’s little brother.

The truth is on any given day the thought of what happens to Justin when I’m dead or no longer able to care for him (or both) is overwhelming, a thought I’ve had to shelve as I deal with more immediate concerns. Fortunately he’s not quite eleven yet and won’t graduate from high school for ten more years, so even in my complex “perseverationland,” I still have some time.

I have to say however that when I hear about places like Airmount Woods I feel a surge of hope, both for Justin and for our family, that a significant piece of the “post-21 abyss” might have a happy ending. I hope that with society’s increased awareness and acceptance of autism that my son will eventually find a safe haven, will be respected and treated with the dignity he deserves.

That’s my dream for him. And I won’t give up until it becomes true.

 

December 16, 2013

The Gap (not the fun store)

Posted in My Take on Autism tagged , , , , , , , , at 10:38 am by autismmommytherapist

Recently I had the luxury of attending Autism New Jersey’s annual conference, a day which is comprised of a myriad of autism-related workshops which are really worth attending if you can make it. I always take some new ideas (and candy from the booths) away from me, and have made a concerted effort to get there every year. This conference was particularly informative as I learned a great deal about the transition years and services for adults with autism which I’ve written about in a previous post, as well as heard some really heartening things about residential options.

Some of the information was redundant (I now know more than I ever need to know about special need trusts), but the most exciting part for me in the residential workshop was a talk given by Tom Toronto, who works for the Bergen United Way. In the midst of learning about guardianship and registering for the DDD I was treated to the layout of a beautiful home constructed with autistic adults in mind.

Said building will house eight residents, and comes with a “sensory room” for anyone who needs it. The layout and design were stunning, and Mr. Toronto’s enthusiasm for his job evident. I took a deep breath and let all the information wash over me, because this is a topic dear to my heart.

Someday, Justin will no longer be able to live with us. The fact is, although I’m shooting for a hundred and fifteen so I can outlive him, I’m fairly certain I’ll fall a bit short of that mark.

I had my sweet boy when I was in my late thirties, and by the time he graduates high school both of his parents will be pushing sixty. I don’t want his little brother (who might have his own challenges) to be his primary caretaker, and frankly I’m not even certain he’d accept the job. So at some point we need to look at residential options for Justin, and I have to say I was heartened by this one shining example.

Trust me, I have friends with much older kids on the spectrum, and many of the options at the present time are not so pretty.

We have a long road ahead of us. As his parents we are not allowed to place ourselves on the list for residential funds or in-home respite care from the Division of Developmental Disabilities (DDD) until I turn fifty-five (I’m the baby in this couple by two months, I’m taking it), and the wait for services is approximately fifteen years, which puts Justin at age thirty-four, and his parents at seventy.

He graduates when we turn fifty-seven, so I’m keeping my fingers crossed we’ll have some sort of daytime job for him at that time, since I’m not really certain how I’ll fill those thirteen years before the DDD funds become available and he can strike out from our home. I know people who are in this phase now with their children, and the options for keeping them occupied are extremely limited.

Extremely limited options never work well for our boy.

I’m always interested to talk to people about their plans for their son’s or daughter’s future, and I’d love to hear from all of you. I have to say despite hearing about that long gap between graduation and the kick-in of services I was hopeful that by the time Justin reaches majority, I believe there will be more safe housing and employment options open for parents to choose from.

Considering what I’ve been hearing since Justin was diagnosed almost a decade ago, I feel more hopeful we can locate a place where my boy will be safe, productive and happy, which is all I’ve ever wanted for him. If you’re so inclined, please share your thoughts on your child’s future residence, I’d love to hear them!

December 2, 2013

Services for Individuals with Autism

Posted in AMT's Faves tagged , , , , , , , , , , , at 12:07 pm by autismmommytherapist

autism symbol

This last few weeks have entailed more excitement than usually transpires in a year around here, and I have much to tell all of you. I’ve already shared the fabulousness that is my eldest child in regards to his hospital stay and our trip to Disney, but I would be remiss if I didn’t share my newfound knowledge as well. I had the good fortune to attend Autism New Jersey’s annual conference recently, and managed to participate in three workshops which were informative (and even entertaining) during the course of the day.

One related to residential placements which is a post for another day. The last two I attended were entitled “Navigating Services”, and pertained to discussions regarding the New Jersey Department of Children and Families, the New Jersey Division of Developmental Disabilities, Medicaid, and SSI, among a myriad of other topics.

I consider myself pretty well informed on the above issues as I am frankly terrified of missing something that would be to Justin’s detriment (I’ve found a heightened state of anxiety makes me more meticulous when conquering paperwork), but I learned a lot during the sessions, and would like to share my knowledge with all of you here.

The presenters were S. Paul Prior, Esq. and Maria Fischer, Esq. of Hinkle, Fingles and Prior, P.C. They were extremely knowledgeable in their presentation (which at times was hilarious even though they are lawyers), and I thought some of their facts would be helpful to all of you. It’s a lot of information, and they shared even more information with us than I will include here. The facts below were in my opinion the most important pieces of information, and a good place to start with educating yourselves. I’ll present them in bullet form (that’s how I retain anything these days). I hope this information will be helpful to all of you!

· Before 1/1/13 the DDD (Division of Developmental Disabilities) provided services birth to death for individuals with autism or other developmental disorders- now the Division of Children and Families (DCF) provides these services for individuals up to the age of 21

· EXTREMELY IMPORTANT- Any individual born after 1/1/97 MUST reapply to the DDD when he or she is 18 years old, even if they’ve registered with the DDD in the past (this is the big “secret” nobody seems to know about)

· To qualify for DDD or DCF services the individual must exhibit functional limitations in three out of seven areas of “major life activity”:

-self-care -receptive/expressive language -learning -mobility -self-direction

-capacity for independent living -economic self-sufficiency

· Children found eligible for services by the DDD prior to 1/1/13 DO NOT have to apply to DCF

· When applying for any services you will have to fill out an adaptive behavior summary form. It is imperative when filling this out that you answer the questions as if you comparing your child to a neurotypical child. THIS IS NOT THE TIME TO DISCUSS YOUR CHILD’S PROGRESS OR ACCOMPLISMENTS

· Some of the services DCF can provide include respite care, behavioral supports, residential placements, and in-home support

· At 21 your child will receive services through the DDD as long as the individual is eligible for Medicaid. At age 21 or 22 your child’s educational services will cease. This is where the DDD can provide both day programs and residential services. Individuals can be placed on the Community Care Waiver (CCW) waiting list for residential services if parents are both 55 and older; the person caring for the individual with a disability is no longer willing or able to care for the individual; there is a risk of abuse or neglect; one parent has a chronic condition and can no longer care for the individual; the person’s safety is at risk due to behavioral or physical needs. Unfortunately, the wait for residential services can be from 10 to 12 years after eligibility is established

· At 18 SSI (Supplemental Security Income) kicks in. The individual with a disability may not have more than $2,000 in assets at any time, or make more than $741 per month. FAILURE TO HEED THESE RULES WILL RESULT IN FORFEITING SSI FUNDS

· Applying for SSI automatically gets you Medicaid

· IMPORTANT- MAKE SURE NO FUNDS ARE IN THE CHILD’S NAME. If your child inherits anything from you or a grandparent he or she will be rendered Medicaid ineligible

· SPEND THE MONEY MONTHLY on food, clothing and shelter. It is supposed to be spent on the individual, and remember, he or she cannot have more than $2,000 in assets in their name at any time

May 25, 2011

Search Day Dinner Dance 2011

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , at 9:32 am by autismmommytherapist

I’ve mentioned this before in my writing- when it comes to my children’s education, I have two very fortunate offspring. My youngest is thriving in his local public school, entertaining himself almost weekly with fossil digs, and “bear hunts”. Most recently, his joy was compounded by singing exuberantly in a choir of a hundred pre-school children (how a music teacher can convince that many three-to-five-year-olds not only to mimic her hand movements but learn (most) of the songs’ lyrics as well, is beyond my comprehension). He loves his friends, the paras, his teacher (trust me, many of his sentences at home begin with “but Miss Liz says”), and is almost as eager to see that school bus arrive each morning as his mother is. In ABA terms, school, for Zach, is a primary reinforcer.

And then, there’s Justin.

My eldest child has always adored learning, easily surpassing my computer skills by the age of two (I know, that’s not saying much), and often flinging books at me over the years to read to him until I taught him to hand them to me (it’s tough to read the work of Eric Carle with double vision). That early love of literature has fortunately flourished into his own ability to read, a skill he possesses for which I am eternally grateful. He’s not big on math (neither was his mother), but I’m certain he would have been a killer contestant in a spelling bee. He’s formed a friendship with one of the students in his class who has technically adopted Justin as his little brother, and I’m told he now moves rather easily from task to task, location to location, with little angst.

And trust me, I’m grateful for that too.

Ms. Hillary Clinton once stated that it takes a village to raise a child, and I can assure you it takes an entire planet to raise one with autism. His progress to this point has been a culmination of the efforts of his teachers from his last two placements, as well as his current one. Justin has benefited from dedicated staff at all five of the schools he’s attended up to this point, educational facilities spanning two different states. His father and I are thankful for the compassion and caring he’s received from all of his centers of learning.

I simply must say however that his current school is different, and I was reminded just how special it is when I learned about its history this past weekend at the Search Day Annual Dinner Dance, where we celebrated the school’s fortieth anniversary.

The Search Day Program is unique in part because it was the very first twelve month specialized school for autism, the brain child of a very dedicated group of parents in the sixties who recognized a need for a different type of learning environment for their children, and stopped at nothing to achieve it. Some of these early founders went on to establish Autism New Jersey (formerly known as COSAC), a state organization which provides support and advocacy for parents of children with autism. I’m a proponent of putting things into context, and I can assure you that what these parents achieved in that time period, while IDEA was in its nascent stages, prior to the internet, and before any widespread knowledge of autism (or compassion for those who have it), is nothing short of miraculous. I’m forever indebted to their advocacy and determination, and I’d just like to thank these pioneers for providing a venue that has helped so many children, and their families, reach their full potential.

Due to the collective efforts of various teachers, parents, and corporate sponsors such as Home Depot, TD Bank, Foodtown and Wegman’s, Search Day has expanded from classrooms situated in the rented space of a church basement, to the excellent facilities it is comprised of today. Search’s campus now includes three buildings and thirteen acres of land, on which the various school programs, a Career and Life Center, and a Campus Store, are located. Through the efforts of those who helped raise funds for various projects a new playground has been constructed and a swimming pool installed, the latter in which I’m hoping my eldest will learn to paddle just long enough to save his life if necessary.

And while it also takes an entire planet to create a school of such caliber dedicated specifically to the advancement of those with autism, none of it would take place without the dedication of a brilliant, and highly motivated staff.

On a recent Friday night, after indulging happily in our two free drinks and cornering the market on the plentiful mini-quiches and pigs-in-a-blanket floating around the room, Jeff and I joined the other hundred-plus parents, educators, and sponsors who attended the gala at the English Manor in Wanamassa, in the large and beautifully furnished dining room where I was happy to be served a fine meal I neither had to cook nor clean up. We listened to a passionate and rousing speech by the school’s director, Kathy Solana, who almost made it to the end without crying. Jeff and I couldn’t help but revel in the rousing cheers, particularly from the teachers, for every single child featured in the moving slide show presentation (the one of our son seated next to Santa with a “why the hell am I doing this look” was particularly priceless).

The truth is, I could ramble on about the obvious commitment of the staff, some of whom have worked there for decades. I could describe the overwhelming compassion for not only the children, but for their parents as well, as evidenced in every conversation I had with Justin’s teacher, his aides, and his speech instructors that night. I could share with you that I wondered when these people ever sleep, that their sheer willingness to go above and beyond for their students on a day-to-day basis is what renders this school unique.

But the real reason this school is special is simply due to the staff’s palpable joy in working there.

I was an educator (well, will always be an educator), for thirteen years, starting as an aide at a school for emotionally challenged children in New Jersey, and eventually ending up at a magnet school in a public school district in northern Virginia. I’ve been fortunate during the span of my career to know phenomenal teachers, true visionaries in their fields. Some of them, to my never-ending gratitude, have worked with my children. Truly, I’m no stranger to amazing educators, whom we in the field often refer to as “lifers”.

I must admit however, that I have rarely encountered a school where every single faculty member I’ve met has resided in this exclusive club.

As Jeff and I eventually left the gala, total losers in the raffle and the 50/50 but happy to have gotten out of the house, the director took ten minutes of her time to escort us to the door and chat with us about Justin’s progress, and her vision for the school’s future. I admit I was a bit teary as we exited the premises (with my ramped-up crying these days I think Jeff’s worried I’ll be going through the “change” soon, and is concerned his prospects for a happy future are rapidly diminishing), but I pulled it together enough to convey to my husband how fortunate we were to have landed on this particular square, in the lifetime chess game of autism. The truth is, I may not ever be able to give my boy actual words, or the intimacy of a lifelong friend. I won’t dance with him at his wedding, or watch him drive off into the sunset with his lifetime love. He won’t make me insane with his incessant and unreasonable demands as a teenager (maybe that’s not such a bad thing after all).

But with a lot of hard work and the support of his incomparable grandma, his father and I were able to give him this school, this education, this pathway to progress, and that is no small thing. To the staff and supporters of Search Day School, and Justin’s home district who made it possible for him to attend, we would just like to say we are so deeply appreciative.

Thank you.