There’s Not Enough “Me”

Things have been rough around here the past few months.  In January, my mother received a terminal diagnosis and began experimental treatments. In February, I got married, and my little family of Heather and I grew by 3.  In March, after multiple hospital and rehab stays, my mother stopped the experimental treatments and came home to be cared for.  Shortly after that, Heather was informed that as of April 1 she would no longer have access to the 11 hours of adult support services she receives each week.  Yes… 11 hrs… per week…

I feel a little bit like I’ve been banging my head against a wall.  I’m busier than ever, but mostly with things that need to be done over and over again.

One of my priorities has been ensuring that Heather is cared for when I can not be here.  Whether I’m working, or home caring for mom, making sure that Heather has appropriate support and activities to enjoy is a priority.

I spend what seems like hours each weekend calling my people, looking at my work schedule and Mom’s Dr schedule, making sure that someone is responsible for Heather during all hours of the day.  When I get a day or two arranged, there is a brief moment of relief, followed by the knowledge that there are still 3 days left in the week to figure out.

The thing is: she doesn’t care.  Even if she could understand the weight of all that arranging, she would tell me not to bother, because she just wants me.  She just wants me to sit and sing her a song. She wants me to be home.  She wants me to give her a shower.  She wants me to help her change her clothes. She wants me to tuck her in. She wants me to be there before she leaves the house, and then again when she returns. All my hard work is thrown back in my face when she aggresses towards me as I try to walk out the door, simply because she wants me to stay. She has a day filled with fun activities ahead of her, but she just wants me.

The problem is that sometimes after all the figuring-out, there’s not much “me” left.  The thought of sitting and singing the same song that we’ve been hearing on repeat for the past 3 months is sometimes actually painful. Fighting with her to take a shower, when she willingly hops in the tub for my sister? Not worth it!  The weight of being everything to her is sometimes too much to bear. Sometimes, there’s not enough “me” to meet all the needs that need to be met.

I have no wisdom at this point, but I have hope. We’ve been through this before.  Life has been stressful, and we’ve gotten through it.  We have a fantastic support system, and every year or so, Heather finds new favorite songs.  I’m holding on to the hope that life settles quickly this time, and that our new song is right around the corner. For now, those moments when I catch her looking out the window when she wakes up to see whose car is in the driveway and whispering with a smile, “Brookie here”, help me dig deep and find a little more “me” to offer her.

How do you get through the times when there doesn’t seem to be enough “you” to go around?

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“You’re just taking it the wrong way”

My friends come in many shapes, colors, sizes, and ages.  We all met at various stages in our lives.  Our careers range from Project Managers, Paralegals, Homemakers, Social Workers, Engineers, Dental Hygienists, Mechanics, Customer Service Reps., Educators, Musicians, and so so many more.  We enjoy hiking, boating, fishing, animals, football, hockey, BBQs, camping, bonfires.  Our absolute favorite thing to do together is to simply HAVE FUN!  And I’d say we do that quite well.

However, the one thing that can ruin a good time for me is to hear one of my amazing, beautiful, intelligent friends use the “R” word (side note, I do not even like typing that word, let alone repeat it). Hearing that word is like one of them giving me a solid gut punch.  For a while I would just take that punch and let it tear me up on the inside, but I wouldn’t say anything.  I don’t know if it was because I didn’t want to start that conversation and stir up a lot more than I was ready for, or if it was because I didn’t want to be labeled as the “fun sucker” or “Debbie Downer”.  Whatever my reasoning for staying quiet was, I’m glad I’m over it.

After a while it occurred to me that they aren’t going to know they are hurting me unless I tell them.  So, I began speaking up.  If one of my friends said the “R” word in conversation in front of me I would make a face and ask them if they could use a different word.  Depending on the day, the topic, and the friend, sometimes they would say a quick “sorry” and jump right back into conversation.  Sometimes they would have that nervous smile and say “oh yeah”.  Other times my friends would catch each other saying it and say “we aren’t supposed to use that word in front of Mary.”  But then there were times when it would stir off into a whole conversation about why I don’t like that word.  They would say things like “you know that’s not what I mean” or my favorite “you’re just taking it the wrong way”.

These conversations used to make me feel uncomfortable.  I don’t have anyone in my immediate family that has a disability so how was I going to find the words to explain why this word feels like a gut punch?  How was I going to drive this home?  Honestly, I’m still working it, but at least I’m trying.

The definition of the word in the dictionary is “less advanced in mental, physical, or social development than is usual for one’s age”.  I doubt that it was ever intended to be used the way that it is thrown around today.  I tell them that “if everyone used this word correctly, it never would have become slang in our conversations”, it would still be more of a medical term or a diagnosis.  I try to explain to them that unfortunately the “R” word is attached to an unpleasant stereotype.  However it happened, it has now replaced “stupid” or “dumb” and people use it far too often for the wrong reasons.  When they say “that’s not what I mean”, I ask them what exactly DO they mean?

According to the Oxford Dictionary there are 171,476 words in the English language surely they can find a replacement word, can’t they? Or when they say that I’m just taking it the wrong way.  Am I? Well…. No.  No I’m not.  I’m taking it the way that you are intending it which is demeaning and degrading to all of the amazing individuals that I have had the privilege of working with in my career.  The individuals that try so hard to overcome obstacles that life throws at them daily.  Individuals with hearts as big as they come.  Individuals that some days have difficulty finding any words never mind words to use to stick up for themselves.  So if I’m offended that you’re calling someone “Re****ed” for doing something wrong or saying something silly, then please PLEASE tell me what way I should be taking it?

I try to keep my cool.  I try to recognize those teachable moments and when I see them, I try to only stand on my soap box for a short time.  Knowing my friends the way I do, I can tell you that they all have truly good hearts.   I know that they didn’t mean to offend me.  My friends aren’t good people… they are the GREATEST people.  Each and every single one of them means the world to me.  I don’t ever want to seem like I’m trying to push them away or shut them up.  I just want them to know the power that THAT word holds.  Maybe some of my friends will stop saying it in front of me.  Maybe some of my friends will slip up and say it occasionally.  But maybe, hopefully, my friends will be able to erase that word from their vocabulary altogether.

“A tongue has no bones, but it’s strong enough to break a heart.”

The Things I Have Learned

By Jan Randall

My son Andrew is now 31 and I have no idea how he got this old, so fast.

andrew-24-months  andrew-2014

He was 20 months old when I first noticed his regression. At that time I was told not to worry he was completely normal. He was officially diagnosed just before his fourth birthday, after a yearlong search for answers as to what was wrong with him. So clearly, I’ve been doing this Autism thing for a long time. A LONG time…

Over that time there have been so very many things that I have learned from so very many people. I am grateful that all I have learned has made Andrew’s life so much better. So, I’d like to share some of these things I’ve learned with you in the hopes that maybe one of these things can make a difference for you or someone you love.

Visuals are vital!

Marty was the 2nd in a long line of Autism Specialists who came into our home to work with me and my husband Bob around Andrew’s issues of behavior, learning and language. Andrew had just turned eight when we met Marty. He and I would meet weekly and I would share with him different challenges we were having with Andrew. Marty would offer ideas and we would brainstorm ways to support him so he could function at his best. Not long after we first met,Marty suggested that we should be using visual supports for Andrew. I thanked him but said no, Andrew can say what he wants (“you want juice”, “go in pool”) and he knows our daily routine. Still, each time I would complain about a behavior, or problems with transition, or another issue we were having, Marty would say to me,“Andrew needs visual supports”. My response was always the same. No, he doesn’t need them.

Nearly a year later, during an unusually difficult period of time when Andrew was constantly jumping and screaming “NO NO NO” to any request we made, Marty once again suggested that Andrew needed visual supports. This time I admitted, that I didn’t really know what they were,  or how to use them. I told him, “you will need to show me what to do”. A week later Marty and I created Andrew’s first Visual support, a daily schedule. I used it that very day when Andrew came home from school, and the results left me shocked. Instead of a screaming fit of “NO NO NO” when I asked to put his coat and backpack away, Andrew quickly ran to do it once he saw it on his schedule. This experience taught me the vital importance of visual supports. It was also a lesson for me on being stubborn. All these years later I think that I was probably most reluctant because I knew creating and using visuals for him would be just one more thing on my very long “to do” list of work related to Andrew’s needs. Little did I know how much the visual schedule would save me in time wasted dealing with difficult behavior and both Andrew’s and my level of frustration.

andrews-board

He still uses a visual schedule daily so he knows what is going on and so he can schedule  what he wants to do during the week.

Chores are important for EVERYONE!

My Mom has been a huge influence in my life, especially when it came to raising my kids. One of the things she impressed on me when my kids were just toddlers was it is never too early to teach and have them do chores. I remember asking her, just after Andrew turned three, “What can I teach him to do when he can’t even talk, when he is constantly having meltdowns?” She told me,“have him empty the wastebaskets.” And so a chore for Andrew was born. I learned quickly that he really ENJOYED learning this new routine of getting the small wastebaskets from the bathroom and bedrooms, then emptying them into the kitchen wastebasket. I also learned that having a chore to do was good for his self-esteem. Over time I learned too that there wasn’t much that he couldn’t do to help around the house, and that teaching him those skills wasn’t all that hard. I also learned that he learns by doing and that backward chaining is one of the ways he learns best. Today as an adult he has a long list of chores and housework he takes care of around the house including hanging on the clothesline, folding laundry, stripping and making beds and taking care of all of the trash and recyclables. He loves helping around the house

sky-is-limit

Be careful of your mindset

Kevin, the first in a long line of what I call mentors, came into Andrew’s life when he was ten years old. They would cook together, play games, go sledding and do other things. One day when Kevin and Andrew came home I asked them where they had gone. Kevin told me that they had gone to a small Café over on Providence’s East Side. I was shocked! I couldn’t believe that he had taken Andrew, who was at that point loud and prone to meltdowns over minor things, to a café, where people quietly sip lattes and chat over scones. I asked him, “weren’t you worried about what Andrew might do?” Kevin told me that Andrew did really well. He was quiet sipping his cocoa and enjoying a cookie and really seemed to love going there. Although I had always said “the sky’s the limit” for Andrew, I learned from this experience that I had been unknowingly setting limits on what Andrew could do. Before that day I never would have taken Andrew in to any place where he needed to be quiet or where there was the possibility of him not doing well. Kevin opened my eyes to the fact that Andrew needed chances to experience all kinds of things, big and small.

It takes a village

Over the years I have learned that without all of the amazing people who have come into Andrew’s and our family’s life we would not be where we are today. Over a period of about 20 years I have worked closely with 5 different Autism Specialists from a wide variety of training and professional backgrounds. They brought vital knowledge and strategies that have provided us with ability to support Andrew to become the wonderful guy he is today.

andrew-and-nick

Andrew has also had well over 30 mentors in the last 20 years. While a few of them have been duds, most have been wonderful, and some have become part of our family. From the best of them I have learned that it doesn’t matter if you are trained in Autism or if you are 18 ,25, or 40 years old if you are a “natural”. By ‘natural’ I mean, if the type of person who will treat Andrew the same way they would want to be treated; not as a client, a case, or someone who needs to be fixed, but rather as a respected friend who needs support. These are the people who have made a huge difference in Andrew’s life and in mine as well.

My friends, who are fellow Autism Moms are also part of that village. They have taught me that it does not matter where your kids are on the spectrum or if there is a 10, 15, or 20 year age difference between my kid and yours, because we all have so much to learn from each other’s experiences.

stressed

Life is too short to stress

It’s no secret that we Autism parents have a lot of stress. In fact I was part of a study in which researchers followed a group of moms of adolescents and adults with autism for eight days in a row. At the end of each day we were interviewed about our experiences. On four of the days researchers measured our hormone levels to assess our stress. The results were that “Autism Moms Have Stress Similar To Combat Soldiers”.

I’ve learned that it isn’t always the Autism that is the stress inducer, but rather the people who don’t get Andrew, the seemingly non-stop meetings, the paperwork and other assorted hoop jumping that comes with Autism. It can drive me crazy, if I let it. I have learned that it’s vital to find ways to keep the stress at bay or at the very least find ways to cope when things get overwhelming. For me, it’s making time to get out of the house and away from the day to day STUFF. A few years ago after a number of unexpected significant health issues I joined a small “guided meditation” group where the leader would talk us through relaxation, then guide us through an inner relaxing journey. I also bought some guided relaxation for my MP3 player to use at home. I’ve also found that simple things, for example taking some “me time” to go out for breakfast or dinner with a friend, getting a pedicure, or getting out for of the house with Bob for an hour or two  can make a big difference in how I am feeling.

All of us have learned things on this Autism journey, but we don’t always take the time to think about all the knowledge we’ve gained. I hope that you will make space to think about all you have learned and the difference that it has made in your son or daughter’s life and in yours.

Life’s Unexpected Moments

 HAPPY NEW YEAR! I recently went away with my family for New Year’s Eve which involved spending the night away from home. As a family we have done this a few times. I showed my twin sons online where we would be staying and the different activities we would be doing while away. They both seemed happy and we marked it on their calendars. We planned this about a month in advance in the beginning of December. Like everyone else December was a crazy and busy month for us which entailed getting ready for the holidays with all the extra baking, cooking, decorating, and shopping, etc. Christmas is my favorite holiday so I tend to go to the extreme with all of that. We also unfortunately all at varying times caught that severe respiratory bug that was going around which made preparing for the holidays even crazier. I say this because I was a bit exhausted and hadn’t fully recovered from all the holiday hustle and bustle so when it came time to prepare for the overnight trip, I was a bit tired, but still looking forward to spending the night away with my family. On the way to the hotel as it was several hours away, I had that experience of feeling like I was forgetting something. I mentally went down the checklist of things. I had packed all essentials including dietary specialty snacks as there was a restaurant nearby where we were going that could accommodate my sons’ dietary issues. My sons had their iPads with them. I had double checked that all appliances were off before we left. My dog was left at his “sitters” (my parent’s home) as the hotel was not dog friendly. Something kept nagging at me which is when I realized that I forgot to bring the social story that I had written regarding elevators. One of my sons has had some ongoing issues which developed in his teens out of blue with getting on elevators. I was in that place where only parents of kids with autism sometimes find themselves to be, whether to address an issue or not as it could bring up more issues. When a child has not been exposed to something that they have reacted negatively to and they will experience again, I have found it typically is best to prepare them as much as possible. Every child on the spectrum is different. Though this depends on the child, as some kids build “negative associations” with these experiences and have a difficulty moving past them. I was hesitant about bringing it up at this point. I felt it would possibly result in him being overly anxious about using the elevator. We arrived at the hotel with me second guessing my decision not to say anything. Well, this is what happened next. I was trying to nonchalantly observe my son with the elevator issue. The elevator happened to be near the entrance we walked in. I pushed the button and the elevator door opened and my son was actually getting in the elevator much to my relief. Well, as I looked back his twin brother had a look on his face like I am not going in that elevator. Go figure! Sometimes that is what happens in the world of having more than one child with Autism. After trying several times, he refused to get on the elevator so he walked up the three (thank goodness!) short flight of stairs. Preparation works best for him while for my other son it’s best not to prepare him too far in advance as this adds to his anxiety. Fortunately, the rest of the trip went well. I thought about this afterwards and while it is always an adventure with my sons when we travel, it made me realize sometimes life offers up experiences like these to help us understand the importance of being flexible with our kids and not pigeon hole them into just having specific issues or assigning them with specific difficulties. My sons definitely helped to remind me of this on that trip.

Christmas, used gifts and my side of autism

Cassie Ricco

Let’s start by saying I love Christmas.  I love everything about Christmas.  The music, decorating, the food, but most of all buying the gifts for my loved ones.  I love seeing how happy they get opening their gifts, and seeing, what inside all those shiny boxes.    Now how does autism affect my Christmas shopping you ask?  Well, my son Parker, age 14 has high functioning autism and every single year the child asks for things that I have to buy used and online through eBay or other websites.  No problem right!  Except when the things he wants are from China and the order does not come in until well after Christmas.  I have had to print out pictures of what was coming and wrap them.  This did not always go well.  Can you blame him for having a meltdown when he wants a specific Thomas train and got a piece of paper?  Really Mumma!  I remember one year he wanted a vintage (used) Kermit the frog puppet the one where you put your hand in his mouth and you talk for him.  It was the only thing he talked about for months.  I search months to find that silly frog and every time I found one I would get out bid in the last two seconds.  I kept searching and bidding and finally won one.  I paid for it and went about the rest of my Christmas shopping.  I was so happy I was finished a few days before Christmas.  I wrapped my gifts and waited for the very special day.  It finally came and everyone was so happy except my Parks.  He did not get his Kermit.  I made a bunch of excuses saying it must be lost in the mail.  To my surprise he handled it very well.  I still have no idea what happened to that Kermit.  I am not sure if it came and got misplaced or if it never came.  Flash forward to the present.  I get his list at the end of September so I can make sure I can get everything by Christmas.  I used to feel bad about buying him used gifts for Christmas, but the reality is they do not make what he wants new anymore.  On Christmas morning he is always so super excited to open up his twenty-year-old Pokémon game that I bought used for double the original cost.  However, now I always make sure I check to see if my item was shipped and received.  I would now like to eBay and the internet for making this a possibility.  Merry Christmas and a very happy New Year.

Turning 18!

This past year has been extremely busy!  My son with ASD turned 18 at the beginning of the Summer and that event sent my life into a whirlwind of things to get done.  It looked a little something like this:

  1. Prior to turning 18, I had started the application process with DDS to reapply for my son to be eligible as an adult. I was fortunate that this timeline coincided with his 3-year evaluations at school, so a lot of the requested information was taken care of with this testing.  If your child is around 16/17 you will want to reach out to your DDS family coordinator and get the information you will need about this process.
  2. Since my son will be unable to get his license, I took him to the DMV to get a state identification card. I found out I could have done this at the age of 16 but we got it done and it was fairly easy.    Check out the DMV website for all the details.
  3. A couple of weeks prior to his birthday, I started the process to apply for Social Security for my son. I am glad that I did this prior to his birthday.   If I had waited until after he turned 18, they would have not talked to me because I had not yet received guardianship for him.  With his approval for Social Security, he automatically received MassHealth insurance – no application process needed thankfully!
  4. This is a very personal choice.  It was the best fit for my son and his needs.  I got all the forms online from my local probate court and was able to do this process on my own.  I would not recommend this for everyone, but for me, it worked.

The Summer was all about paperwork and forms.  Luckily, it was never too overwhelming but it does force you to get organized and know where all the documents you need on your child are located.

The highlight of the Summer for me was my son’s 18th birthday party.  It was the first party we had ever held for him that was held outside the home and attended by friends and family…. not just all family.  What a night!  It was fun and sort of a celebration for me and my husband.  We had survived the last 18 years and were better for it.  It was as if the past 18 years had all come together in one night with family, old and new teachers and current friends!!  I friend of mine but together a photo album for my son.  When each person arrived at the party, we took their picture and handed them an index card to write my son a birthday message.  After the party, she put all the photos and index cards together and formed a photo album that, 3 months later, he still looks at daily with a smile.  I wanted him to have a visual memory of this party and it was the perfect gift!

I guess my hope in writing this blog is to get the wheels turning for parents/guardians of children with ASD who will be celebrating their child’s 18th birthday soon.  It is a time of a lot of change and the sooner you can get a grasp on what may need to get done, the easier it will hopefully be for you and your family.

The Things You Miss

The Things You Miss

Patricia Leonard-Toomey

Many years ago my husband and I decided that the best thing we could do for our family was to have our daughter Devon remain living at home with us for as long as possible.  When she was 3 years old we were advised that having someone with such significant behavioral concerns remain living with her family would be a difficult thing.  We were basically told that we would never have a “normal life.”  As time progressed we were reminded at least one time per year that a residential option would probably be best for “the family.”  We always declined.  Devon is 30 years old now and still lives at home.  It is never easy, but this was and is our choice and we take it one day at a time.

In my position at CAR, I often hear of families who take vacations with their children, of opportunities available to them because their kids can fly, stay in hotels, stay with relatives while the parents go away, stay with caregivers while the parents go out at night etc.  I am always happy for them, but I know with certainty that there are others like me….people who have never gone on vacation with their families, people who except for one time per year [thank you CAR hayride] who are not out after dark…people whose children must sleep in their own beds every night with the night routine down to a science where nothing can ever change.  Every family has different challenges, but sometimes I think we have to acknowledge that there are many people and families who are restricted from even the opportunity to “relax” or have a day away.

Please note again, that I am not complaining.  It has always been our decision, and I cannot envision a life without the day to day interaction with my daughter, but once in a while the things I miss out on become a little bit overwhelming.  Some of the things you miss are wonderful family events, some are difficult family events.

For example, I was only able to attend 1 ½ hours of the 4 hour wake we had for my Mother.  I had to get home to meet my daughter.  I did not have an opportunity to attend my Father’s wake.  The weather was a factor in this, as well as my daughter’s serious upper respitory infection.  I did make it to the funerals.

I missed my older daughter’s graduation from Medical School and Match Day because she was in Chicago.  I did not have a chance to attend the rehearsal dinner for her wedding even though it was in Providence, because we felt it was more important that I be at the wedding.  It was a beautiful wedding and I was so happy to be there for the entire event.  Devon had a great time too.  My older daughter was not alone for any of these events.  My husband and my father were always there for her, but it was still hard for me.

Over the summer I became a Grandmother to the most beautiful Nora.  She was born in Texas and in August moved to Kentucky with her parents [my daughter and son-in-law.]  Their careers as a Developmental Pediatrician and EP Pediatric Cardiologist have dictated where they live.  Because we cannot travel and they had to move across the country I have never met my Granddaughter.  I can Face Time and Skype and I have many pictures and videos, but it is not the same thing.  I want to hold that beautiful baby in my arms.  I know it will happen someday, it is just hard to wait.   Some days the restrictions I have on my life are harder to accept than on other days.   This major event was just another reminder of some of the things we have missed.   I know I am not alone in this and I believe it is important to acknowledge some of the more difficult and maybe unexpected issues some of us face at certain points in our lives.