Special Needs Mom: A Life of Advocacy

So much of what defines me and who I am is being a special needs mom. For 33 years now I have been somebody’s mom but saved the best for last. I am Joey’s mom. A mama bear who will fight for her son’s rights to be treated equally and fairly in this world.

A Glimpse Into Being a Special Needs Mom

When you have a child with needs, you learn to advocate from the day they are born. I did start a little early, as I mentioned in a previous post on Joey’s birth. Us special moms fight tirelessly for our child’s place in their community.

It becomes exhausting because it is endless. However, it is also rewarding when you watch your child flourish. We fight for the best education, the best health care (Lord knows they have more issues than most), and the many therapies our children need. There is a constant battle for inclusion in every aspect of their life. We advocate tirelessly to make them feel like they are a part of the community they live in and for their success on a daily basis. All of this struggling only to find out years later, that our children may not necessarily be welcomed into a neighborhood in their community. For this special needs mom, that is heartbreaking.

Like every mom whose normally developing kid goes to school, we have to find a program for our kids after high school. That’s where I am now; looking for the best plan for him because this is Joey’s senior year. When the next educational part of Joe’s life finishes at 21, we have to figure out our next steps. I have my hopes for a bright future. I imagine he will live with us for a few years, and when he is ready, he will move out. He will want that just like his brother and sisters before him.

That is what today’s story is about; an ongoing predicament with what I pray will be a home for young women with developmental disabilities. This story is written from a special needs mom point of view.

Background and the Negativity

A residence is up for sale in our town. There is an offer on this house, and it is slated to be sold to an organization that buys homes for individuals with developmental disabilities. The neighbors and some of the townspeople are fighting it. Admittedly, most of my angst lies with the people living in the neighborhood. They went above and beyond by hiring a lawyer to keep this house from becoming a residence for special adults.

Some arguments stated by the neighbors during two town meetings were; there are no sidewalks, no public transportation within walking distance, it is a danger to their own children, it will affect their resale value, the tax burden is too great, it will cause too much traffic in the neighborhood, will they place sex offenders in the house … blah blah blah. My particular favorite was the fire drills that may occur at all hours of the night; our town has a noise ordinance after all. UGH!

That same woman even looked at the people whose daughter was slated to go into this home and questioned their parenting methods because they dared to put their child in this home. How I managed to control myself in that instance was beyond me … how dare anyone make such a statement! Does she have any idea how insulting that was to all special moms? What kind of a mother doesn’t teach their child compassion for others?

“The mother’s heart is the child’s schoolroom.”

Henry Beecher Ward

I am not sure if they actually believe these reasons or they are just hiding behind them. I know there was some fear-mongering going on when it was mentioned that sex offenders could possibly live in this home. What??? How could you possibly believe that somebody would intentionally put a sex offender in a household of young ladies or young men who may have autism or Down syndrome?

You could have a child molester living right next door to you and don’t even know it. That guy down the street driving the Mercedes could be committing tax fraud or involved in a Ponzi scheme. Maybe he has a money-laundering business or sells drugs? I am sure you get my point, nobody knows what goes on behind closed doors.

Answers to the Questions

All of these questions were answered by representatives from YAI, a support agency of people with developmental and intellectual disabilities. YAI would be buying, maintaining and running this household. The women hoping to live here would be considered a family of 6 with 24-hour supervision. Employees would help them with their life skills, make sure the household runs smoothly, and the residents are safe. They have maintenance teams making sure the property maintains high standards and retain their value. I don’t even have one of those, mine is called hubby.

There will not be extra traffic but an 8 passenger bus in a driveway that holds 8 cars. They don’t need public transportation. Employees will park their cars in the driveway. No different than any other house with teens who may drive or have friends over. But the neighbors don’t seem to be worried about how many cars are parked in their own driveways, just that of this house.

Everyone Has A Story

I listened to one mans tragic story of his own son who lost his life in a facility that he was placed in. I could feel Mr.Carey’s anguish, and it was heartbreaking. However, his plight had little to do with the type of residence in question and more with the sort of facility his own son was in.

I am not judging him as I do not doubt that he genuinely believed what he was saying, He was speaking from a place of pain.

Mr. Carey has initiated remarkable strides to make sure people with disabilities in facilities are safer then they were before his son died. This man is an excellent advocate and even the organization looking to buy this house uses his videos as tools for educating employees. I applaud him for his strength and he was met with great respect by everyone. The Jonathan Carey Foundation

Tax Burden

Another concern of people in town is the increasing burden on the taxpayers. Our town does have a lot of tax-exempt properties, but that is a different fight. This one house would cost the taxpayers less than $1 per year. Supposedly, we have 26 such homes. The way I do math, if we add 74 more, it will cost me $100 per year and I am good with that. So many people could be gainfully employed, and our town could be known as a place of compassion. That is this special moms point of view!

We could send a message to the rest of the country and neighboring cities and villages that humanity is where it’s at! Let us be an example for others to follow! That is the dream of this special needs mom …

One of the most important responsibilities any leader has is to show people the way – to help show constituents to do the right thing.

Curtis Au, the father of a young woman slated to reside in this home

My son, like these young ladies, deserve to have an independent life just like everyone else. What gives anyone the right to take away such an important milestone for them?

The Bright Side & Hope

I wouldn’t be me if I didn’t look for the good. There were many of us at the town meetings who were in support of this house! I would have to say that at least half the crowd was in favor of this residence. It made me hopeful because this was a step up from my confrontation with the town during a similar situation across the street from me. At that time, I was the only one who spoke in support, so things are definitely looking up.

I was blown away by the support that rallied around this one particular family. Their daughter is a vibrant, well-liked 22-year-old who has been a member of our community her whole life. So many people have worked with and taught this young lady over the years, and most were there in support. People with developmental disabilities are a special group of people, as are the ones who work with and offer support to them. They have a calling and a heart as big as the ocean.

There was even testimony from a woman in a neighboring village who lives next to a house owned and operated by YAI. She had wonderful accolades for the residents, workers, and management of this home. Her property values have gone up in the 16 years they have inhabited this residence.

I would also like to mention that I know that there were people against the house at this meeting that are wonderful, giving people. I am not sure what was going on to make them go against what I believe is in their heart. Peer pressure? Peer pressure isn’t just for teens. I need to remain hopeful that what is indeed in their heart is not what I was hearing. I want so badly to believe in their humanity.

The duty to care, to love one another, to serve one another, to help one another …

Denis McCarthy in his speech advocating for this home.

The Innocent Victims

A family wants to sell a home and somebody wants to buy that home. It could be a beautiful thing for all involved. The family selling could start the new life they seek, and some very special human beings can get and experience the independence for which they have worked so hard. The neighbors can learn compassion for others and teach it to their children. The real world is full of people who are not the same, and of different abilities, but all human beings.

Why would anyone feel it is ok to take away the rights of the homeowner to sell that house or the rights of these young adults to live an independent life? I don’t watch the news because I can’t stand the disingenuous heart of so many. It isn’t just our government or representatives that are bringing this country down, sometimes it feels like there is a general lack of humanity everywhere.

Final Thoughts

All of the points brought up at the meeting were met with answers. Thorough, decisive answers backed up with facts. Unfortunately, the naysayers don’t really want to hear the answers. Not everyone will choose to see the beauty this home can bring and will focus on the negativity. Now that I am writing this, I realize I should pray for their enlightenment and hope that love and compassion will win.

In less than one week, the town did come back with a decision against this home and it will now go to the state for final denial or approval. Stay tuned …

*UPDATE* The state approved the house and the town did appeal the decision, which ultimately lost and the house will be a home to some very special young ladies!

To read more on being a special needs mom; here is a previous story, Wonder: Auggie & My Son

If you want to read about my previous story involving another special home across the street from me you can read my blog on Compassion & Empathy.

Let all that you do, be done in love and keep us special needs moms in your prayers – as strong as we are, we need all the lifting we can get.

Much love always,

Sandy

#enlighten #empower #inspire #educate and always #BeKind