Author Archives: Sherry Amaral

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.

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What Autism Awareness Month Means to Me

                I was at one of my favorite local stores in the checkout line, when the sales associate asked if I wanted to donate money towards Autism. When I asked what organization the money would be donated to, the sales associate seemed confused by my question. The manager was then asked the same question by the sales associate who had to then call corporate to find out who it was. While I patiently waited for an answer, the woman in the next checkout area asked me a question regarding my insistence on knowing what Autism organization the donation was going to. She asked me why I asked where the money was going to since it would help someone with Autism, wouldn’t it? I responded by saying that I preferred to find out what organization it was and if it was a national organization vs. local. She seemed confused by my response again asking, weren’t all Autism charities the same? Didn’t they all help people with Autism? I tried to politely disagree. At this point, the manager came back and told me the name of the organization. I declined to make a donation after finding out the info because I did not wish to donate funds to a national organization who really has not helped my family directly. I explained to the other customer, sales associate and store manager that I was a parent of twins with Autism and did not support this organization’s policy or their way of supporting families with a person with Autism. The store manager and other customer seemed a little taken aback by my response and stated that they never would have thought to question where the funds would go to. They figured it would just help someone with Autism. The sales associate told me that she had a family member with Autism and never thought also to ask: assuming that the money would help someone like a family member. I responded that it may not be the case and they thanked me for the info. To be honest, they may have thought I was a bit nuts to do this over a small monetary donation, but I felt that it was important to also bring awareness to asking where the money was going when making donations. As my sons have gotten older, I realize the importance of this more and more. For myself, it is not just about the awareness piece. I remember when my sons were younger, I purchased quite a bit of items that had puzzle pieces or the Autism awareness ribbon in hopes of spreading Autism awareness. I feel it is even more important for people to not only understand Autism, but also have more of a tolerance for people with differences in general. Our kids tend to stand out more so because of their challenges whether it be their stimming behavior, sensory and social issues as well as communication challenges. Some parents choose to address stares and awkward situations with passing out cards explaining how Autism affects their child.  We have all been in some interesting situations with our kids while in public. I remember when I took my sons to the movies, one of them was a bit scared by the loudness in the theater as well as the darkness. He refused to sit down in the seat. Funny enough he did want to watch the movie, but would only do so standing by the door while he held the door open. After many failed attempts at trying to get him to sit. I stood with him by the door while my other son sat with his helper. Halfway thru the movie, the movie cinema staff person came in to check out the theater as they typically do. When the staff person saw that my son was standing near the door and wanted the door open, he gave me a confused look. I quickly and quietly explained to him that he had Autism and while my son had successfully sat through previous movies, he for some reason could not do so now. The staff person just nodded. I thought to myself, OK, I guess he gets it. He left. In 10 minutes or so he came back with a folding chair for my son to sit down on which to my surprise my son immediately sat down. I was able to inch him closer to the seat section where he watched the remainder of the movie without issue. After the movie was over, I found the movie theater staff person and thanked him again. I asked if he knew someone with Autism and nonchalantly he responded he had a neighbor who had a child with special needs and he wasn’t sure if he had Autism. The staff person said that he got the chair because he couldn’t believe my son would stand for that long. I, of course, was very appreciative of his kindness and assistance in helping my son. This person not only chose to look past what may have appeared to be “odd” behavior, but actually helped the situation. Officially April is Autism Awareness month, but I hope we all can help others better understand not only our children, but that we all have differences that make us who we are. I recently saw something that represented this…

 

Always

Unique

Totally

Intelligent

Sometimes

Mysterious

 

It’s the Holidays Again..

The Holidays are here again. I cannot believe that Christmas is only a few weeks away. For our kids on the Autism Spectrum the holiday season can be very anxiety provoking and chaotic. Changes in their typical routines contribute to more anxious days and nights.  For some kids it can be very overwhelming from a sensory

perspective especially with all the lights, sounds and smells that we all attribute to the holiday season. It takes a lot of extra thought and planning to help our kids hopefully not only tolerate these circumstances but actually enjoy themselves(hopefully, anyway).

It is important to try to prepare your child based on their ability to tolerate different experiences. In my case, having twins with Autism means trying to make it fun for each of them based on their own individual issues. One of my sons really enjoys this time of year. He loves the extra cooking, baking and home decorating that happens in my house. He loves having Christmas at our house where my family gathers for a full day of eating, playing board games and more eating.

My other son while he enjoys some aspects of Christmas like the baking and Christmas lights really gets overwhelmed with visitors and family taking over his space and routine especially on Christmas day when I host Christmas at our home.

It is important for him to have “alone” time throughout the day where he relaxes in his room. He typically will join the festivities when he is ready after these short breaks on his own. He has been known to bring people their shoes and jackets sending them the message it’s time to go. It’s important to try to understand how overwhelming the holidays can be for our kids.

One thing they both enjoy doing with me is choosing their holiday themes for their bedrooms. I also try to involve them in choosing different cookie recipes and Christmas presents for school staff and family members. They will be offered several choices for these types of things through pictures symbols and text. I feel like this helps them prepare and understand that the holidays are coming. I also use a calendar showing the countdown to Christmas.

This is where I feel using different visual systems helps a lot whether it be a social story, calendar, visual schedules, etc.

Quite often people will ask what they should get our kids for the holidays. I realize that buying Christmas gifts for our kids can be challenging not only for ourselves, but for friends and family members too. I suggest being as candid as possible with them if you are comfortable doing it. I think if your child does not like or want whatever that year’s hot toy is, it is important to think outside of the box. Some suggestions that you can give to people may be an Amazon gift card to buys apps, gift certificates to zoos and museums, aqua therapy and hippotherapy, even a hotel with a pool for a one day family vacation could be an option (one of the best gifts that we got). Most people appreciate these type of suggestions knowing that you will actually use them vs. playing a guessing game on what our kids may possibly like.

It may take some additional thought and planning, but in the end it’s well worth it if our kids not only survive but maybe actually enjoy the holidays too. Happy Holidays!

Turning 18

For the past nine months or so, I have been preparing for my twin sons 18th birthday in a way that you may not think.

Instead of focusing on the “typical” things like high school graduation, proms and life after high school, I have been preparing for my sons turning 18 to ensure they continue to receive necessary services and then transition for both them and my family is made as seamless as possible. I have started having the conversation with their current slew of specialty doctors that they see if they know of any good specialists that they can refer me to that provide the same services that my sons currently receive but to adults. Some have said that my sons can continue with the same practitioners while others have given me other doctor’s names to ease the transition to the adult medical world of services.

Working in the field has offered me the opportunity to know a little more in what the DDS Adult intake eligibility process entails. I applied on behalf of my sons in the beginning of this year as there typically is an extensive waiting period from the time you apply and the person is deemed eligible. This process can be tedious as there is an extensive written application and supported documentation that needs to be mailed in with the application. I have already met with the intake person along with my sons and now am waiting for their decision.

In a few short months, I will be heading to the local Social Security office to apply on their behalf for Social Security income which will entail gathering additional paperwork to see if they qualify for this benefit. I have started gathering their current IEP’s, social security cards, and birth certificates to help with this process.

I also have begun to review their guardianship paperwork. This is a very personal choice for families. I found helpful info at the Massachusetts Guardianship Association.“The MGA is a non-profit organization offering information and resources to individuals, families, and professionals on Guardianship and related matters in Massachusetts.” On this site, you can find Information and Videos on Guardianship of a Minor, Guardianship of an Adult, including info on a Roger’s Guardianship, Conservatorship, and Alternatives to Guardianship and Conservatorship for Adults. I found that it explained the different options in a clear way that made it easier to understand what options you have for your child.

This process can seem overwhelming, but with a little planning and thinking about your child’s future needs, it can be done without having to experience too much of an issue in our children’s lives and also in our lives.

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