Disclaimer – I have a material and/or financial connection because I received a gift, sample of a product and/or compensation for consideration in preparing to write this content. All opinions stated within are my own.

When you’re the parent of a child with intellectual and developmental disabilities (IDD) there are a lot of fears that keep you up at night.  Probably the biggest issue is what will happen to your child once you die.  Where will they live?  Who will care for them?  What sort of life will they have?

I used to feel as if I had all the time in the world before I needed to worry about these things but in the blink of an eye my son is on the brink of being an adult – and it scares the crap out of me!  For parents of neuro-typical kids the path is clear – either vocational school, college, a job or possibly enlisting in the military.  From there they usually are launched to their independent future.  This is far from the case for parents of children with Intellectual Disabilities.  Here’s the reality – our kids will never have an independent future.

As their legal guardians, we need to plan and pray.  The solutions can vary dramatically depending upon where you live, what supports you have and your child’s ability.  The good news is that our children do have more options than previous generations.  For many families a state institution used to be the only solution.  There was no thought to where the person would live, how they would spend their time or even, quite frankly, their quality of life.  Now, each person is considered as an individual and the focus is on person centered planning.  This requires a team of people who care about your child to be involved helping map out a plan for his future.  Most importantly, the child is involved in this process.

There are no easy answers however.  Money is always an issue.  Many people with IDD  can’t find jobs.  A vast majority of people with IDD can’t live on their own so a roommate situation is necessary and finding someone who’s compatible isn’t always easy.  Location is also an issue.  Most people with IDD can’t drive and need to rely on public transportation. Do you see why most of us lay awake at night?

As I said, the solution for every family is different.  I feel lucky.  My son has a strong support system, especially two sisters who understand they will be taking care of him and are happy to do so.   He is able to care for himself and will probably only need an in-home aide for a few hours every day to help him.  There are now home monitoring systems which will allow me to check in on him through video monitors, get alerts if he hasn’t come home and automatically shut down any appliance he may have left on.

I highly encourage any parent who has a child with IDD to start planning as soon as possible.  It’s never too soon.  Here are a few first steps to start planning for your child’s future living situation:

  • Get involved with ARC , the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.
  • Learn more about the funding and services available in their state through DDS.
  • Talk to other families in your community who have a loved one with IDD to learn about their solutions.
  • Learn about tax savings through the ABLE Act.

What plans have you made for your child?  What resources have you tapped into?  Share your stories here.  We all need to support each other.

PRN-NATIONAL-AUTISM-NETOWRK-COVER-61013-1yHigh

For any mom, trying to coordinate family vacations can be stressful. For those of us who are trying to coordinate a vacation that includes our neuro-typical children as well as our special needs’ child, (not to mention our spouses and older parents with disabilities) that task can be overwhelming.

The National Autism Network, has provided these tips to make a vacation a little more manageable:

1. Be Prepared!
Call ahead to the place you are staying and check for any special accommodations they make for children with special needs. If you are attending an amusement park, visiting guest services to inquire about a special needs pass for your child should be the FIRST thing you do. It is also helpful to bring a physician’s note detailing your child’s disorder. Be sure to bring items your child may need, like headphones to drown out large crowd noise or special snacks to accommodate any specific diet needs.

2. Take Sensory Breaks
It may help your child with autism, and your family as a whole, to have built in mid-day breaks to wind down from the morning activities and to gear up for the night’s adventures. Your child may get overwhelmed spending too much time with crowds and loud noises regardless of the coping strategies you implement.

3. Include Every Member of the Family
Remember, this isn’t just your vacation, it belongs to everybody. Provide your family members with a variety of different types of destinations and activities to determine that there is something for everybody.

4. Cruising with Autism
If your family is searching for adventure on the high seas, then look no further than Autism on the Seas. Since 2007, the organization has been dedicated to assisting the cruise industry in providing cruise vacations for individuals and families’ with special needs.

5. Autism in Flight
A growing number of airlines are offering mock airplane simulations that allow for your child to experience what it’s like to visit the airport. Your child can experience every aspect of flight without ever leaving the ground. The TSA has a helpful list of specific information for passengers with special needs. The Smart Fish: Frequent Flyer app offers another way of introducing your child to the airport experience.

About National Autism Network:

National Autism Network was founded with the mission to be the largest online resource for the autism community and provide the most comprehensive information and news related to Autism. The site includes a provider directory, discussion forums, events calendar, social community, hundreds of autism resources and more.

AlisonSpenserThis morning I woke up with the certain knowledge that I will be a caregiver for the rest of my life for my husband and son.

It’s not like I didn’t see this coming. My husband has Primary Progressive MS – a diagnosis he received 4 weeks after we were married two years ago. But it was yesterday afternoon that we sat with the psychiatrist who did exhaustive testing on my son to finally confirm what everyone had been dancing around for years – my son is severely intellectually disabled. This is the new politically correct term for mentally retarded – the phrase that was peppered throughout the doctor’s report. Before anyone gets insulted, upset or shocked I’m told that this is truly the diagnostic term. Yes, it’s hard to hear and tears at my heart, but it is what it is.

I’ve used the term “intellectually disabled” when describing Spencer for quite some time but the full impact of that diagnosis didn’t hit me like a bucket of cold water until yesterday. When I asked the doctor what I should expect for the future, I was told that, while he could probably be trained for a job that he will enjoy, he will be living with us, a relative or some group home for the rest of his life.

I’ve been struggling with my role as a caregiver for quite some time now. I’m watching my mom completely sacrifice her own life to take care of my dad who has Alzheimer’s, macular degeneration and recently a stroke. She’s doing this with no help. It’s not that she’s a martyr, she just feels she can do it herself. I often grieve for the close relationship we’ve lost because of this and how she sees her grandchildren less, something I know bothers her. Just yesterday I said to her I don’t know how she does this without a giant bottle of wine and anti-depressants. She just laughs it off and explains that “she just keeps going.”

I honestly don’t know if I will be able to “keep going.” I’m not as good a person as she is. I don’t want to give up my life to be a caregiver. But even as I’m writing that I feel guilty. I’m not the one with MS or intellectual disabilities after all. But isn’t this the ultimate conflict for the caregiver? How do we manage our own guilt for resenting being put in this position and the burning desire to sometimes just run away?

I constantly advise women to take care of themselves while caring for others because if they don’t, they as the caregiver will become ill. My challenge is trying to heed my own advice – how am I going to do this? Tonight I’m having a girlfriend over for drinks. My husband questioned why I would want to add something else to my plate (now I have to clean the house on top of numerous other business obligations today) and I explained this is how I need to nurture myself – I need to maintain girlfriend connections to laugh, cry and replenish.

I write about family safety and wellness and often special needs but it’s occurred to me that what I need to start writing about, sharing and asking for support in, is care giving. There are millions of people in my position. As anyone who follows my blog regularly knows, I’m an open book. I believe that the best way of coping is sharing. How have you managed being a caregiver? Please share your story and let’s all help each other.

Autism Speaks is conducting survey to learn more

Every parent of a child with special needs worries about the future.  I constantly think about where my son, who is intellectually disabled, will live when he becomes and adult.  Not only do I worry about finding the appropriate living situation but how we’ll be able to afford it.  I know I’m not alone.  Many parents I speak with share my concerns.

The number of autistic adults in need of residential living and support has risen and will continue to do so.  Besides experiencing difficulty finding a suitable residential space, families have also been facing increased financial burdens.  Ian Paregol, the executive director at Community Services for Autistic Adults and Children (CSAAC) in Montgomery County, Maryland, cited that the estimated lifetime cost of caring for an autistic adult is about $3.2 million.  Because of the lack of affordable housing available for adults with autism and, because of this, approximately 80 percent of adults with autism, up to 30 years old, are living at home.

WhiteHouseIt’s because of this that I’m committed to creating privately owned, residential group housing for adults with autism and other special needs through my company Accessible Home Living.

Autism Speaks, is conducting a survey to gather more information from people with autism and their caregivers about their current and future needs in regards to housing and residential support.  The information, gathered now until August 9th,  will be created into a report and analyzed by top professionals in the field.

If you know someone who could benefit from the information in this survey, please forward this along.

 

facebook autismI’m told my son is not on the autism spectrum, but in my mind that doesn’t matter. World Autism Awareness Day is equally as important to me whether he is or not. I might never find the exact “label” for my son but, just like so many parents with a special needs child, I worry about what the future holds in store for him. What I want – and what every parent of a child with disabilities wants – is to know he will grow up in a world that accepts him for who he is, can see his unique talents and offers him the opportunities every other person is given.
I’m grateful for World Autism Awareness Day and the spotlight it focuses on the need for acceptance of those with disabilities and research into cures. I’m happy that my son wasn’t born 30 years ago when there was ignorance and intolerance (although that still exists far too much.) And, while for many, it’s the children we think of most, what about the millions of adults who have autism? How many times have they been turned down in a job interview because they couldn’t answer the questions properly? What happens to those individuals who can’t live completely independently but who no longer have family to help them?

I’ve been blessed with having a special needs’ son. Yes, there are some days that I certainly don’t feel that way. In fact this morning was one of them when I felt a little sorry for myself for the inordinate amount of patience I need to have and work I need to do. But, as most families with a special needs’ child will tell you, they’ve learned the gift of unconditional love and acceptance.

All I can hope is that as our society becomes more aware of autism and other special needs, we will learn to appreciate the gifts that every individual contributes to society. I hope our communities will realize that accommodations made in the workplace, in housing choices, transportation and, most importantly, relationships will benefit us all.

Alison Jacobson is the President of Accessible Home Living, which provides accessibility and disability remodeling for seniors and the disabled in Fairfield County, Westchester County and Putnam County. In addition to designing handicap accessible bathrooms, installing wheel chair ramps, stairlifts and widening doorways, we also custom design handicap accessible modular home additions for people who need a caregiver but are looking for an alternative to nursing homes and assisted living facilities. Accessible Home Living’s aging in place home designs incorporate universal design for accessibility for seniors and disabled individuals. Our Certified Aging In Place specialists work with families to create beautiful, handicap accessible living environments.

Most moms of neuro-typical 14 year-olds are starting to think about them getting their  driver’s license and dating.  For the moms of many special needs kids, these rights of passage are a long way off and might not ever occur.  Every mom is proud of the accomplishments of their kids and bragging rights are expected. But for those of us who are parents of special needs kids, it takes on a different meaning.  Little things that most parents would take for granted thrill us.  Of course, the term “special needs” is a catch-all phrase so every mom’s list is different as every child’s disability is slightly different.

But here’s my bragging list.

He answered the phone properly – With the exception of when his dad calls, Spencer doesn’t usually answer the phone.  But the other day he answered the phone as the caller ID showed it was my  business colleague whom he knows.  She related to me that he had a perfect conversation with her – OK three sentences but still  – and explained that I wasn’t home.

He makes breakfast and lunch for himself – Since he’s a teenage boy and the most important thing on his mind is food, Spencer mastered this pretty quickly.  Now, if I’m still asleep he’ll make himself waffles or cereal in the morning and sandwiches or even a hot dog for lunch.

He takes out the trash without being asked – This is his chore and he knows it.  He even knows when to put the trash bins outside for the garbage collector.

He often asks if I need help when I’m cooking – Again, back to the constantly thinking about food but it’s still an offer to help!

He shovels the driveway – My husband has MS and can no longer shovel the driveway.  Thank goodness Spencer is big and strong!  Yes, it takes several instructions on which way to push the snow but he does the entire driveway.

He read a passage in church – My heart was in my throat as he walked up to the pulpit on Christmas Eve to read a passage along with four other 8th graders.  Yes, he stumbled once but his voice echoed loud and strong throughout the church.  I’m not sure who was crying more, me or his Grandma.  The most incredible feeling of pride I’ve ever had.

So, for those of you who know me and even those who don’t – when I talk about these accomplishments they might seem insignificant to you but they mean the world to me.  Please share in my enthusiasm and remember that there are other moms out there who also want to brag about their special needs’ child.

April has been designated as National Autism Awareness Month but, with the recent report from the Centers For Disease Control that every 1 in 88 kids is now diagnosed with an autism spectrum disorder (ASD), spotlighting this disability one month out of the year is certainly not enough.

Here are the new statistics:

  • The diagnosis of an ASD has risen by 78% in the past decade. That’s not to say that there’s been a dramatic increase in ASD but probably better diagnosis.
  • For boys, the rate of an ASD diagnosis is 1 in 54 – almost 5 times higher than in girls
  • More children are being diagnosed at an earlier age (3), but still most are being diagnosed at 4 or 5 years of age.  Early diagnosis is critical.

While my son doesn’t “officially” have a diagnosis of ASD, he has special needs and, in my opinion, the label doesn’t matter because his disability is quite similar.

As many of my readers know, I’m pretty much of an open book.  I talk about all the issues and challenges that I deal with because it is my hope that I can help someone else not feel as isolated or even share some insight.  I realize this isn’t true for many parents with special needs children.  For many reasons they wish to remain private and I understand that.  Unfortunately too often our kids are still labeled, judged and discriminated against.

That needs to change.

Here’s something that I’ve been thinking about a great deal lately.  This population of ASD kids is going to grow up and need to become productive members of our society.  They will want to go on to college, work, drive, live independently, have personal relationships, get married and have kids.  I know that I want that for my son and he wants it for himself.  Not too much to ask in my opinion.

In order for this to happen though, neuro-typical peers need to start gaining a better understanding for what it means to have ASD or some other disability.  I’m so proud of the Top inclusion program at Wilton High School.  For those of you not aware of this program, it was started by a few high school students who recognized the importance of helping every student feel included.  Their mission statement is simple: “To encourage students to work together to promote the inclusion of all students in our school and community.”  Participants team up with special needs kids as buddies to support them both during school and at after school activities.  This has also led into another great program, TOP Soccer, which works under the same principal.

These types of programs need to happen all over the country and the stigma of ASD and other special needs must be eliminated.  Both adults and children need to become more aware of the characteristics of ASD and how they affect someone socially.  I’ve felt the pain as kids, not understanding my son’s special needs, laugh at him behind his back.  As our kids grow up, these challenges will become even greater.  Imagine how frustrating it must be to be turned down for a job because, even if you’re qualified, you’re unable to effectively manage a job interview?  Think about trying to navigate through ordinary tasks such as grocery shopping or asking for directions when interacting with people is difficult.

This is not an issue that will only affect a few families, this is now an issue for our society.  How will we embrace these special needs young adults and allow them to have the same opportunities that everyone else has to lead a happy and productive life?

October 15, 2011:  Saturday, 9:00am. SPED*NET New Canaan and New Balance Fitness Area Dedication and Ribbon Cutting ceremony. 

Location: Waveny Park, New Canaan across from the mansion.

This is a sensory friendly fitness path built for everyone in the entire community, designed with the needs of individuals with Autism in mind. Celebrate our project that is finally completed after three years of hard work, dedication and commitment. The fitness area is perfect for individuals with Autism 12 years or older. The area is available to the entire community including seniors and athletes. Thanks to SPED*NET New Canaan and New Balance store in New Canaan for this project.

SPED*NET, Special Education Network of New Canaan, Ltd, is a non-profit organization whose mission is to empower parents, professionals and students with disabilities to become more effective advocates.  SPED*NET New Canaan runs entirely on the donations of individuals and corporations.

See http://www.spednet.org/ for more information.