April 23, 2018

The Other Shoe

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 10:09 am by autismmommytherapist

His “eees” resound throughout the living room, punctuated by small silences that make me look anxiously toward him and gratefully away as I realize they are just silences, not episodes of catatonia which invade his happiness and enjoyment of life. Since we started a new medication eight weeks ago we have seen a vast improvement in quelling his disorder, starting with near-miraculous eradication of the spells for two weeks, a plateau where they resumed but not with their initial ferocity, and a leveling out that both his school and family can live with on a daily basis. It has been an incredibly stressful six months of first having to diagnose him, choosing between conflicting diagnoses, and then holding our collective breaths and hoping we picked correctly and treatment would help him.

It did. And a half a year and two very tired parents later, we are profoundly grateful.

Justin is almost fifteen, and to tell you the truth I anticipated that going into puberty there would be something (all my friends’ kids have experienced some additional challenge to their severe autism), but honestly, I never thought it would be this. I anticipated aggression, or seizures, or even self-injurious behaviors which he had never exhibited previously, but not catatonia. Frankly the only time I’d ever heard of it was in relation to the movie “Awakenings,” which was a total tear-jerker and sad as hell. I read a lot about autism on various websites, and I was stunned I’d never heard of this disorder that affects between 12-18% of all individuals on the spectrum.

Live and learn.

Although I was prepared for future challenges, I have to admit I was (and am) angry my boy has one more thing to deal with in his life. Quite honestly I feel that dealing with severe autism and OCD are enough to handle, but the universe has mocked me and has other plans, so now we’ve added catatonia to the mix. Since I was anticipating something would rock our world and we’ve now identified it and are treating it you’d think the drama would be over, and it is somewhat. We have a name for what ails him. There are several treatment possibilities should what we’re doing now fail. It should be life back to “our normal.”

You’d think I could say the other shoe has dropped. But with autism, and especially with severe autism or any severe disability, it ain’t over ’til it’s over.

This year I’ve dedicated my writing for Autism Awareness Month to helping caregivers. I’ve spoken about getting the help you need, whatever that may be. I’ve written about the importance of making friends with parents of children with your child’s level of severity. Today I want to talk about how important it is to let the people in your life know the big picture, especially if your child will never live independently and will always need your care, or that of a caregiver.

For years my husband and I didn’t talk about the long-term implications of Justin’s severe disability. I think we kept things close in part to not worry people, and perhaps somewhat out of a fear that if we were “Debbie Downers” people would abandon us. I’m not a big believer in regrets, but if I could go back and change a few things I would have spoken more about the potential and likely trajectory of Justin’s life, just so the people who are important to us could get a glimpse of what his forties, fifties, and beyond will probably entail. For once I recently took my own advice (a miracle!) and wrote a long email detailing Justin’s newest disorder, the various treatments he might have to endure, and even worst-case scenarios. I even explained how having catatonia could severely affect not only his post-twenty-one life, but his parents’ lives as well. I laid it all out there, held nothing back.

And damned if almost everyone responded with kindness and concern.

Of course this response rate is a testimony to having understanding families and my choosing good friends, but this disclosure helps in a myriad of ways. It’s also a dozen or so less times I have to spill my guts and try to make people with no direct contact with severe disability understand how profoundly this affects my family both now and in the future. If I have to cancel a get-together I don’t have to explain what’s going on, or discuss why perhaps I’m just completely overwhelmed and can’t make it that day. This understanding of our situation can help prevent relationships from disintegrating, and help others understand why my stress levels the last six month have been through the roof (my new blood pressure medication can bear witness to that). Quite honestly, it makes it easier for me to ask for help if I need it, as once people get the huge ramifications of what Justin’s experiencing they will probably come to our aide more often if we ask.

And God knows, we can all use a little help sometimes.

I don’t tell everyone the full story. I am careful in who I choose, selecting individuals I know will care and be genuinely interested in what’s going on. Good friends, yes. My dental hygienist in my thirty seconds of speech- not so much. I try to avoid people whom I know will get that glazed look in their eye when I speak about my son. It’s not worth the trouble.

You will find probably find however that a number of people in your life are genuinely interested in your family’s story, and I recommend you divulge away. Let people know what autism means for you on a daily basis, not just how it affects your hopes for your child, but your daily routine as well. If disclosure leads to them asking if they can help, give it a try and let them. Honestly, if they drop you like a hot potato after you disclose they would have abandoned ship eventually anyway. It’s better to cut ties sooner than later.

With many types of autism, there exists the perennial “other shoe.” For my family, the worry will never be over as I strive to outlive my son and know I never can (but I’ll give it my best attempt). If I’ve learned one thing in my decade-and-a-half living with an autistic child it’s that there will always be something, and it may not be pretty. Lighten your load if you can. Speak up when it’s appropriate.

Try to loosen your grip a bit on that other shoe.

 

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April 16, 2018

Make New Friends

Posted in Life's Little Moments, My Take on Autism tagged , , , at 2:38 pm by autismmommytherapist

Last night I snuck out of my house on a Sunday night, left the kids to my husband, and had a fun and civilized meal with several of my autism mommy friends whom I’ve known for years.

I know, don’t hate me. It was bliss.

We haven’t had the opportunity to do this in over a year, although we all keep in touch with one another through Facebook or in person. One of these amazing women will have her doctorate in a few months. Another has been an advocate for her son and other autistic people for decades. Yet another runs a bike camp for kids with autism with a phenomenal success rate of independence. All of us save one have two autistic kids each (we are very good at making people on the spectrum apparently). We are all coping in our various ways, optimistic yet realistic about our children’s futures.

We are also all very tired.

For two hours we talked about autism and (amazingly!) other things, just reveling in being with people who “get it,” and not having to fulfill a single mand for a while (my autism peeps get that one). It was a glorious evening despite the weather, and we all vowed to not let so much time go by before the next one.

I know that it is integral to my sanity to have these women in my life, and I do not exaggerate (not even a little).

I’m writing about this today because it is (still!) Autism Awareness Month, and my focus this year is on caretakers remembering they need to care for themselves too. Something I feel that is essential in surviving this autism gig is making friends with other parents of autistic children, and going one step further- making sure you connect with someone whose child has the same level of autism as yours. I have friends whose children are on the same end of the spectrum as my high-functioning child, and our conversations are necessary and yet bear absolutely no resemblance to the ones I have with my friends whose children reside on the more severe end of the spectrum. I’ve found I need both perspectives to glean advice, vent, and have a conversation with someone who comprehends the long-term ramifications and the logistics of what I’m discussing regarding each of my sons.

Plus it is exceptionally fun to have at least a couple of people in my life I don’t have to explain every single detail to. It leaves more time to eat and drink wine.

Whether you’re just starting out on this autism path with your child or you’ve been in the trenches for a decade or more, try to make those connections. One of my sons is still friends with a boy we met in pre-school (I am tenacious in my relationship-building). Back in the day when my kids were little I often signed them up for events with our local autism organization, and I met a number of parents there. One I met through a contact who thought she’d be a good person to speak to regarding our school district, and although I can’t remember who set us up I am forever grateful we connected. With my more high-functioning kid I made friends through volunteering at school and in cub scouts. Sometimes a special education PTA meeting is a wonderful place to forge those bonds- even if your town doesn’t have one the one a few towns over might. My kids’ hairdresser wouldn’t let me leave the shop one day until I cold-called a woman who also had autistic kids (trust me, major eye rolling ensued on my part) because she insisted we had to become friends, and she was right.

I even inappropriately befriended all of my son’s early intervention therapists. Hell, they were always at my house anyway.

It will take time (which I know you don’t have) to build these relationships, but I cannot stress enough how integral they are in both helping your child and helping you. No matter what stage your child is in you need a sounding board, someone who can help you make connections to assist your child, and/or hopefully someone who just knows how to listen, won’t make suggestions, and just lets you vent.

Sometimes having the latter is imperative before you can even attempt the former.

If you’re just starting out on this autism journey I know you’re probably scared, overwhelmed, and of course, more than a bit tired. Try to reach out if you can and make friends. It will help alleviate your fears, reduce your stress, and benefit not only your child but you too in the end.

Plus, it may actually end up being fun, and I’m guessing you could use a little fun right about now.

Find that person who’s a good fit for you and reach out. If that doesn’t work, try another. Pretend it’s high school (God forbid!) and you’ve got to just keep going until you find your niche.

It will be worth it, I promise.

Don’t give up.

 

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April 6, 2013

Celebrating Autism Advocates

Posted in AMT's Faves, My Take on Autism tagged , , , , , , , , , , , , , , , , , , at 11:41 am by autismmommytherapist

Bobbie 002

April is Autism Awareness month, and as such provides an opportunity both to recognize the families struggling with the impact autism has made on their lives as well as to honor those who are helping to make their lives better. Among those leading the effort are three advocates who have helped countless families affected by autism. Bobbie Gallagher has been honored by Congress for her advocacy work in autism. As Executive Director of POAC Autism Services, Gary Weitzen has trained tens of thousands of teachers, parents, and first responders throughout the state, and provided programming for families of autistic individuals. Vincent Scanelli has fostered relationships between autistic and neurotypical children as founder of Someone Special Needs You (SSNY), and is now working to build group homes for adults with autism. All three were recently interviewed to share their experiences. Below is the first interview in the series.

For the past two decades, Bobbie Gallagher has been advocating for autistic individuals. Her actions have led to positive changes in public schools, investigations into the high prevalence of autism in her home town of Brick, NJ, and federal legislation to support autism research and care. She was recently honored by U.S. Representative Chris Smith of New Jersey, who successfully petitioned to have the American flag flown over the US Capitol in honor of her autism advocacy. Bobbie is a Board Certified Behavior Analyst (BCBA) and owner of the Autism Center for Educational Services (ACES), which assists parents and educators in developing behavioral programs for autistic children (www.autismcenterforeducationalservices.com). Bobbie is the mother of three children, including a twenty-one-year-old girl and a nineteen-year-old boy with autism.

Kim: How did you come to be such a strong autism advocate?

Bobbie: “There are really two main reasons. First, we have two children with autism, and there is no autism in our family. We can trace back our family tree a long time on both sides. I kept thinking something had to have happened. My husband and I got involved with a parent support group run by POAC in Brick, and we realized that the numbers of children with autism in our town had grown so much we had to move the support group to a much bigger room. It motivated me to find out what was happening in Brick.”

“I soon found out that life outside our home was much harder than inside because of all the people we had to deal with to get help for our kids, and to investigate this cluster in Brick. We eventually made it all the way to the federal government with studies conducted in our town, but nobody gave us any answers. I’ll never forget receiving a brochure from the Physicians for Social Responsibility, who sent us a document entitled “Inconclusive by Design.” We never did get any reasons for why there was such an increase, but I’m very proud we made it to the federal level with the investigation.”

“The second reason I became such a strong advocate was due to the public school system. We sent our first child with autism out of district, but decided after a while we didn’t want her there anymore, and didn’t want to send our second affected child there either. That was the first time someone told us our district had its own program. After that I started bringing the New Jersey Administrative Code with me to meetings, because people didn’t even know what our kids were entitled to. I’ve found the hardest part about continuing to fight all the time is that we may get change for one child, including a better education and better services, but the schools think that what they provide for five other kids is good enough, and they don’t make broad changes.”

Kim: Tell me a little about your work with U.S. Representative Chris Smith of New Jersey.

Bobbie: “Chris got involved with us right away after we met with him and showed him surveys we had done about the numbers of autistic individuals in Brick. He called the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to get them involved, and then we all met with officials in Washington, DC. He helped open doors for us. With the assistance of co-chair U.S. Representative Mike Doyle of Pennsylvania, he founded the bipartisan Coalition on Autism Research and Education (CARE).

He was also the primary sponsor for the bill HR 2005, the Combating Autism Reauthorization Act (CARA). This bill was signed into law (Public Law P.L.112-32) in 2011, and extends the Combating Autism Act of 2006 for three more years. It was a follow-up to his Autism Statistics, Surveillance, Research, and Epidemiology Act (ASSURE, Title 1, P.L. 106-310), which allowed the creation of regional centers of excellence in epidemiology and autism surveillance. Although autism had the highest numbers in the disability world, in the past, funding for other disabled groups always surpassed us. This was the first time we surpassed them in funding dollars, and it really helped.”

Kim: How does it feel to have the flag flown at half-mast over the US Capitol in your honor?

Bobbie: “It’s probably my proudest thing, even though I didn’t get to see it! I found out at the annual POAC Gala, but I was just in shock there. A couple of days later it kicked in and I just thought “that is really awesome!”. It’s my proudest moment, it means so much that people recognized what we had done. It was nice to get the recognition for our efforts. If we need to be called in to do something again, we would do it.”

Kim: Where do you hope to see Alanna and Austin in ten years?

Bobbie: “We will probably live in a different state, somewhere warmer where they can enjoy being outside. They’ll be living with us, and hopefully we’ll have enough support for them! I don’t foresee that they’ll be employed, but I do see them being happy. Alanna in particular has a full day, and a full life- she really enjoys it. Austin will always be the bigger puzzle. He is more difficult behaviorally and medically, and challenges us much more. Because of how challenging he can be, he really drives me to do what I need to do. He makes us feel like we always have to do more.”

Autism Center for Educational Services (ACES)

http://www.autismcenterforeducationalservices.com/

(732) 840-1888