Angela Conrad

As Another Year Draws to a Close…

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As another year draws to a close, I realize that the little piece of my heart that had once seemed forever broken is growing bigger and bigger with each passing year. I have heard that grief and pain get better as time passes, but they don’t. A person’s way of coping gets better, but the pain is forever there. The same is true for a family dealing with a child who has a severe disability. The pain from the daily struggles is always there—we just find better ways to cope with it as time goes on.

When Trenton was first diagnosed at the age of two, my outlook and hope were much bigger and brighter. However, as I watch him grow older and get bigger, there seems to be a dimmer switch on my hopes for the kind of future that I longed for my son.

The years go by. The therapy sessions come and go. Have we made progress during these years of therapies? We most certainly have. However, his progress as a child with severe autism is very slow. The steps and progress are huge for us, but in the autism world, as most of you know, we travel at our own pace and it’s very slow. However, this year we did achieve potty training! That was the hardest task that I have done yet with my sons. It was an 18-month process with lots of tears and meltdowns, but we did it!

I am grateful and forever thankful for each passing year with the progress that we make. But, if I am totally honest, it pulls at my heartstrings. I can’t help but think that, in a way, it gets a little bit worse emotionally as time goes on because he gets older and his disability is more obvious. He doesn’t blend in as well with peers his own age. He is getting older but is still not able to communicate. I could go on with the list, but I am sure many of you understand exactly the areas that I am talking about.

As parents, we want nothing but the best for our children. I know all the sleepless nights we have been through this year. I have witnessed the hard work at OT, ST, and ABA. I am there each step of the way with him and, if I could make the progress go faster, I would. However, at the close of each year, I find myself changing my goals a little bit. I will always hope for the best outcome in life, but there is a time that I have to accept what it is looking like.

So, am I looking forward to what 2017 will bring us? I sure am! In every year that comes and goes, I have met and become aquainted with many amazing fellow autism/special needs parents. We all know that we couldn’t get through our journeys without each other. So, to you, my fellow autism/special needs parents, I wish you nothing but the best in 2017. I hope you and your children are able to make huge strides and achievements this year. We have another full year to see what we can accomplish in our exciting world of special needs.

Rachel L. MacAulay

Dallas Symphony Orchestra to Hold Free Concert for Those With Autism

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The Dallas Symphony Orchestra (DSO) announced that it will be performing a concert designed especially for children and adults on the autism spectrum and with developmental challenges on February 5, 2017. The concert will start at 2:30 p.m. at the Morton H. Meyerson Symphony Center, with a pre-concert event beginning at 1:30 p.m.

This is the second My DSO Concert—the first was held on April 10, 2016, and had 1,100 attendees. “The response to the first My DSO Concert was overwhelming, joyful and affirming,” said Jonathan Martin, President & CEO of the Dallas Symphony. “There was a buzz of enthusiasm from the audience as the music was performed, and gratitude from families that they could enjoy a Dallas Symphony concert without stress or worry.”

The February concert will be approximately one hour long, with no intermission. While the performance will be a traditional orchestra concert, there will be accommodations for people “with acute sensitivities.” These include “quiet rooms” for people who get overwhelmed by the noise; “fidgets, ear plugs and eye covers” to help prevent overstimulation; and TV monitors broadcasting the performance on the lower levels of the Meyerson for those who need to leave their seats.

My DSO Concert is presented in partnership with the Autism Treatment Center, Best Buddies, LaunchAbility, My Possibilities, The McDermott Scholars at the University of Texas at Dallas, UT Southwestern Medical Center and The Warren Center. The original motivation behind the concert was Music Direct Jaap van Sweden, who has a son on the autism spectrum and discovered that music helped him communicate.

Doors will open an hour early for a resource fair with the partners mentioned above. There will also be an “instrument petting zoo” for people to get familiar with orchestra instruments, as well as a participatory music-therapy experience provided by “Sing Your Way Home.” Patrons are also invited to stay after the concert to meet and mingle with other guests, as well as symphony musicians, at a casual reception.

Tickets to the concert are free, but must be reserved in advance. Tickets are available starting on January 5, 2017 by calling 214-TIX-4DSO or visiting the concert website at mydso.com.

Lynne Pearson

Teaching the Art of Conversation

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Arthur was a single middle-aged man who had lived alone since the death of his mother. His greatest love in life was trains and he knew absolutely everything about them. If you ever bumped into Arthur, he would start talking about trains whether you wanted to or not.

Unbeknownst to Arthur, he was unwittingly boring people to death. Some avoided him because they couldn’t cope with having train facts downloaded to them. Some became silently frustrated as he stubbornly refused to pick up on subtle hints that they were not interested. Others tried to be more direct by saying, “Arthur stop talking to me about trains.” But even this approach was rarely successful, as his love of trains was so great he couldn’t contain himself.

We lost touch with Arthur a long time ago, but I now realise that he was probably autistic.

When he was younger, our son Edward used to interact in a similar way to Arthur; although, thankfully for us, he was interested in quite a few different topics. Conversation with Edward was pretty much a one-sided information download rather than a conventional two-way exchange.

Once I observed him and his friend Ned playing a game where Ned said the name of an animal and then poked Edwards’s shoulder (which was the imaginary computer button), and Edward proceeded to give a random fact about the named animal in a robotic voice. They played the game for a good hour with Ned trying to catch Edward out with more obscure animals; both had a lot of fun.

This type of interaction, though, is hardly fit for purpose when it comes to making and keeping friends, especially once you hit the teenage years. I realised that Edward was going to have to up his game and learn some subtle but important conversational rules to help him get on in life.

We started tackling the “art of conversation” training when he started high school. We spent a lot of time, over many years, talking about the things people do if they are interested in what you are saying:

  • They look at you.
  • They lean towards you very slightly.
  • They make little sounds to let you know they are listening (mmm, yeah, uh huh).
  • They nod their heads if they agree with you.

Non-verbal forms of communication can be very hard to notice if you have autism, but if you are made aware of these communication signals you can look out for them and learn to understand what they mean.

We also taught Edward to make a statement about a topic he wanted to talk about and pause (count to five silently). We told him that if the other person was interested in his chosen topic, they would ask him a question about it. We explained that he could answer the question but only with one or two sentences. Then he had to stop and wait to see if the person wanted to carry on talking by asking another question or making a comment about the topic, which was their way of signalling that they were still interested.

We found it helpful to give Edward a set of descriptions of what polite people might do if they are getting bored, which included:

  • Glancing at the clock, phone, or other people a lot.
  • Fidgeting more.
  • Hinting by saying things like, “I’m not really into X” or “I don’t really know much about X” or “I’m not as into this stuff as much as you.”
  • Becoming completely silent.
  • Looking at you less often.
  • Introducing a completely different topic into the conversation.

It’s much easier for Edward to know what’s going on if people ditch polite etiquette. Edward would be completely fine with someone saying, “I’m bored with this conversation. Can we talk about something else?”. But not many people are able to be this direct in their communication style, especially with a kid.

I was speaking to Edward about communication just before I wrote this and he reflected that his conversational style has changed over recent years, in that he is no longer just information-downloading at people but now has conversational turns. I asked him how he thought he had managed to make the change and he replied:

“I think very consciously about what to say to make a conversation work, just like everyone else does.”

My son was unaware that most of us never have to give much thought to talking to people—we just get on and do it. His words made me feel so proud of what he has achieved, but they also gave me greater insight into how much effort he makes just to have a chat with his friends.

With our current education system, it’s easy to get caught up with making sure our kids are making academic progress. But if you are raising or teaching an autistic child, you have the additional task of trying to help them learn these types of social communication skills.

If you are about to embark on “art of conversation” training with your own child, I wish you all the very best.

A version of this piece was first posted here.

Lora Charles

My Son, My Beautiful Son

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My heart is breaking, aching, falling into pieces, cascading downward, landing softly, interspersing with yours. This intricately designed puzzle devoid of instructions, each interlocking piece lavishly stained in colors and patterns, facing upward, beckoning for assembly—it’s complicated. I struggle to place the oddly shaped pieces in harmony with the others; there’s no clear picture of the end mosaic, completely lost in its complexity, vulnerable, apprehensive, feeling inadequate and incapable. Countless pieces isolated, waiting to be orchestrated into a recognizable portrait, unobscured.

I envision a landscape of porcelain and seafoam hues forming a vast ocean sea, a spectrum of tangerine and fuchsia stretching across the cloudless sky generated by the disappearing sun over the earth’s horizon. Waves rolling gently, seagulls gliding overhead rhythmically squabbling, calm breezes whispering. I visualize my sweet boy exploring the shell-ridden sandy beachfront, jumping over foamy waves, fulfilling his sensory needs, enjoying peace, solace, finding contentment. He belongs here.

Sweet boy. My breaking, aching heart is intertwined with yours; in indescribable ways you have captured my soul and I never want to let go. It is you that has taught me genuine, profound, compassionate love that knows no boundaries; an unconditional love that envelopes, accepts, hopes, and perseveres through unpredictable challenges. I promise to walk by your side, be your voice, advocate on your behalf. I am entangled in the obstacles that materialize before us, my hand surrounds yours, together we will be brave.

There are fragments interlocking beautifully, revealing portions of an exceptionally beautiful puzzle, more prominent than the futile pieces refusing to connect. This artwork reveals your story of bravery, beauty, complexity and struggle. Your bright, beautiful eyes radiate joy and curiosity, but also express fear, apprehension and doubt, I notice. Continue to teach me how to assemble additional pieces, to accept, discern, recognize the multitude of layers, fragments, segments that fabricate my sweet, amazing boy.

Forever I am changed. Forever I am stronger. Forever I will love you, just as you are.

Rachel L. MacAulay

The Spectrum Toy Store: An Idea Whose Time Has Come

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Last month, we let our community know about the Spectrum Toy Store, a toy store located in Chicago that catered specifically to children on the autism spectrum. While we thought it was a fantastic idea for a toy store, we never expected our article to go viral, but it did. More than 1.2 million people viewed it, leading many websites and television news stations to feature the news about the Spectrum Toy Store on their social media sites and channels.

Jamilah Rahim, the owner of the store, was a bit overwhelmed by it all, but in a good way. We reached out to her as follow-up to the first piece, to give you more background and let you know what she plans for the popular store in the near future.

AutismAwareness.com: Do you have any family members on the spectrum?

Jamilah Rahim: I do not have family members on the spectrum however, like many people I do have relatives with disabilities. My first encounter with individuals on the spectrum came during graduate school. When completing two practicums, one in a resource room and one in a life skills classroom, I then decided I wanted to focus my career on individuals with more severe disabilities.

AA: What is your greatest joy from serving the special needs community?

JR: The greatest joy has to be seeing the impact you have on not only the children but their families.  Working directly with each child and hearing the parents tell you how much change they have seen in their child developmentally and/or behaviorally.  Having parents call from all over the country thanking you for creating a place for them and their children has to be the most rewarding part.

AA: When were you first exposed to the unique needs of specials needs children?

JR: My first exposure to the special needs community was right after undergraduate school. Initially, I didn’t know what I had a true passion for. My dad then recommended getting into special education. I decided “why not give it a shot.” I then enrolled into a special education program and began working in a residential home for children with disabilities. This is where I fell in love with the field. It not only gave me purpose, but at the end of each day I felt as though I was building relationships with my clients. I used to and still do refer to the children I work with as “my kiddos” and not my clients.

AA: What is the most unique toy request you ever had?

JR: Interestingly enough, I recently had a request for a toy for a child with severe physical aggression. The request came from an educator who had a student that liked to break fingers. She wanted a sensory item or toy that would give the same effect in terms of sensory. This was the first time I had ever had a request like that and had to collaborate with other professionals on what would be the best option. More times than not, parents, educators and professionals are your best source for what works best with children.

AA: Do you work with any organizations to provide toys to families?

JR: I do not work with organizations that provide toys to families. However, I do work with organizations where toys are the primary method of teaching. This gives me better insight on toy selections.

AA: Any special events coming up for the holidays?

JR: Yes, we will have Santa in a few days before the Christmas Holiday. We begin our winter break camp December 26 – January 6, which includes yoga and Pilates. In late December, we are also offering consultations for visual supports for communication books, daily living skills and social skills.

AA: How was business before this – have you noticed an uptick in calls and visitors and online purchases after our article was published?

JR: Business was steady since our opening, however our sales have more than quadrupled since the recent media coverage. We are very thankful for these opportunities as it allows us to not only continue our services to our clients but add new services that they can benefit from as well.

AA: We saw in a recent article that people were driving pretty far to come to you. Are they looking for specific toys? Do they bring their children with them?

JR: Most parents do bring their children which makes the shopping experience a really cool one.  Our store has more of a community feel. Parents can bring their children and no one judges or stares when they see untypical behavior. Many parents come in looking for sensory items specific to their child’s needs.

AA: What has the feedback been like?

JR: The feedback has been amazing! We constantly receive phone calls and emails from people all over the world thanking us for opening a place where their child can shop and be accepted.

AA: Is any one toy in particular proving to be the most popular?

JR: Sensory items are usually the most popular and requested items. Our most popular toys would have to be puzzles.

AA: Have people approached you about opening more stores, or perhaps franchising to other cities?

JR: We have had dozens of phone calls and emails about opening stores in other cities and franchising. Our plan is to open another location on the east coast in late 2017 or early 2018.

AA: Is there really a “Try Before You Buy” policy?

JR: Yes, there is a “Try Before You Buy” policy. And for those items that aren’t open that parents would like to try, we open those items and then use them as demos.

Miriam Gwynne

5 Benefits of a Kindness ‘Elf on the Shelf’ for a Child With Autism

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The latest Christmas tradition has seen elves taking over houses throughout the country. The story goes that Santa leaves one of his elves with a family to watch over the children and make sure they are behaving, with the theory that naughty children will get nothing for Christmas. The twist seems to be that the Elf himself gets up to mischief every night while the children sleep, much to the amusement of the children in the morning. 

Unfortunately, there was no way my autistic children would cope with this. For one, my daughter would be traumatised by the thought of anyone watching her. Second, her non-verbal brother with severe autism is too often seen as “naughty” by others, and there was no way I wanted her thinking he would be getting nothing for Christmas. Lastly, neither of my children need any extra ideas for silly things to get up to, as they are never short of ideas themselves.

BUT my autistic daughter was so desperate to be part of this craze! I hated that she felt left out, as she experiences this exclusion often enough as it is. Therefore, I decided to use the latest trend to help her instead.

We had a visit this December from a loving and giving Elf who gives my daughter acts of kindness to do every day. She is loving it, her friends are loving it, and it has helped her so much. Here are five ways our kindness Elf on the Shelf has helped her so far: 

1. Elf taught her a simple way to make a new friend.

The very first task Elf gave Naomi was to share a snack at school with someone. My daughter has huge anxiety and is selectively mute, but giving a little bar of chocolate to someone enabled her to be silently social. This helped her realise that reaching out in friendship to someone else is not as scary as she imagined it to be. 

2. Elf helped her understand what other people may wish for.

My daughter, like many children (and adults) with autism, struggles to imagine what other people are thinking and what other people may enjoy. One day, our kindness Elf gifted her a small sum of money and said she could be a Secret Santa to seven people. I took her to a pound shop (same as a dollar store in the States) to buy seven items. Out of all the things the shop sold, she was most excited to find toilet cleaner! I helped explain why, although a practical item to purchase, this may not be quite what any of her chosen people would like to unwrap on Christmas morning. We had an ideal opportunity to think about what other people like, which helped her to gradually realise that we all think differently.

 3.  Elf got her out in the community more.

One day, Elf suggested we take food to our local food bank. This enthralled my daughter, who found it difficult to imagine someone not having food in their cupboard. As a result, she became much more socially aware. She struggles to leave the house for any activities or clubs, so Elf has helped her overcome this by giving her simple and achievable tasks to get her out in the community more. This will benefit more than just us.

4.  Elf boosted her self-esteem.

One morning, Naomi woke up to find that Elf had covered a photo of her in Post-It notes! Each note was a word of affirmation and kindness about her because Elf wanted her to share words of kindness with others. She took all those notes and sat them right by her bed. I know she reads them before falling asleep. If they make a difference to her self-esteem, then I don’t care if she thinks the words came from a stuffed elf. There are days when we could all benefit from more kind words directed at us.

5. Elf helped her feel included.

Every morning at school this month, at least one child has come up to Naomi and asked her what her elf has done that day. Although she struggles to tell them, she smiles because somebody has come up and spoken to her rather than simply ignoring her. For once, she is not the “different” child, but rather “one of them,” and this is worth every effort it has taken for me to think of things for her elf to do and say.

I haven’t finished with Elf yet. I have plans for him to bring some autism awareness somehow, and more ideas that could help my daughter during a month she usually finds very stressful. Her Elf on the Shelf is bringing consistency in a month of chaos, fun in a month of stress, and love in a month so typically consumed by consumerism.  

When I started the year, one of my resolutions was to help my child any way that I could. I never thought for a moment that goal would involve a cuddly elf, but it’s working out just fine.

K.M. Hodge

Planes, Trains & Automobiles: Tips & Tricks for Holiday Travel

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Tonight, as I sit here writing a plethora of lists for our family holiday travel, I posted a poll to a parenting support group on Facebook asking for tips and tricks for surviving holiday travel with special needs kids. And boy, did they ever come through.

Even with planning, travel is stressful for everyone. When you add a special needs child who is out of their element, things can get hectic really quickly. If thinking about travel sends you to the corner in the fetal position, then check out these lists. While all kids are different and need different things, there might be something golden in here for you. Safe and happy holidays to you, road-wary (and potentially road-weary) travelers!

Pre-Travel Tips:

Some kids don’t need to be prepped beforehand, while some need a step-by-step itinerary to help them prepare for an impending trip. How best to do this is really up to you. Does your child prefer a pictorial itinerary, countdown calendar, or packing list? If you’re flying for the first time, it can be super helpful to give a detailed description of what to expect on the day and maybe even act out the adventure from the ticket counter to the landing.

Traveling by Plane:

  1. Act out the day to normalize it for your kid.
  2. Tell the desk agent at the gate that you need to pre-board due to special needs. This will help you board the plane first.
  3. Use a car seat if you can, as it can offer a bit of comfort and familiarity.
  4. If you use the car seat, ask for a seat with extra space so there is enough leg room.
  5. If you are screen-time-friendly, be sure to bring your child’s favorite device, extra chargers, batteries, power packs and noise-canceling headphones.
  6. If your kid gets motion sickness, pack a plastic bag, wet wipes, paper towels Dramamine, and motion sickness patches or bracelets. Don’t forget a change of clothes for you and your child.
  7. Snacks can be your friend.
  8. Bring something to suck on or chew, like gum, to help with ears popping. Suckers are also a great way to keep hands and mouth busy.

Traveling by Train:

  1. Budget for a little exploring time. Take your kid for a tour around the station and check out the train. If your kiddo is a train enthusiast, this could be a lot of fun.
  2. Practice the sandwich game with your kids: If you’re traveling with another adult, have the kid(s) between you and them, and have the kids come up with fun sandwich fillings that they can pretend to be.
  3. If you are screen-time-friendly, be sure to bring your child’s favorite device, extra chargers, batteries, power packs, and noise-canceling headphones. The headphones are great to reduce stimulation, as well as to be courteous to other travelers.
  4. Board games, puzzles, and paper and pencil games are also good ideas if your child enjoys them.
  5. Pack snacks and meals, especially if your kid has special dietary concerns.
  6. If your kid gets motion sickness, pack a plastic bag, wet wipes, paper towels, Dramamine, motion sickness patches or bracelets.
  7. If you’re traveling overnight, consider getting a sleeping compartment.
  8. Use a map and itinerary to countdown the station stops.
  9. Not all trains have changing tables available—especially ones for shorter trips—so bring your own changing pad and supplies. Don’t forget a change of clothes.

Traveling by Automobile:

  1. Schedule bathroom, snack and meal breaks. Know your route and where all of the rest stops are ahead of time.
  2. Use social stories beforehand to prepare your child for the trip.
  3. Leave for the trip very early or drive overnight if your kid will sleep in the car.
  4. If you are screen-time-friendly, be sure to bring your child’s favorite device, extra chargers, batteries, power packs, and noise-canceling headphones. Load up your tablets with favorite and new-to-them games and videos. If your kid loves YouTube train videos or car washes, make sure you have enough to last double the length of the trip.
  5. Bring a camera along for your child to take their own pictures and videos.
  6. Games and books and music are all very helpful:
    1. License plate game
    2. Car Bingo
    3. Mad libs
    4. Trivia cards
    5. Joke books
    6. Audio books
    7. Favorite songs
  7. If your kid gets motion sickness, pack a plastic bag, wet wipes, paper towels, Dramamine, motion sickness patches or bracelets. Don’t forget a change of clothes for you and your child.
  8. Bring a portable potty, toilet paper and plastic waste bags.
  9. Bring bag of “new to them” toys and activities. Our family picks up cheap thrift store toys and games and doles them out a little bit at a time.
  10. Take regularly scheduled breaks. You can use a visual timer to let your child see the progression of time until the next break. During breaks, have your child do big movement exercises and stretches.

Do you have any tips to share?

 

Rachel L. MacAulay

When Pigs Fly: Airport Introduces First Therapy Pig

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Visitors to San Francisco International Airport may already be familiar with the airport’s Wag Brigade, launched in partnership with the ASPCA three years ago. The Wag Brigade consists of a variety of friendly dogs of many different breeds and sizes, all certified by the ASPCA’s Animal Assisted Therapy (AAT) Program to serve as therapy animals. These furry friends wear designated “Pet Me” vests and roam the terminals with their handlers, helping to bring calm among the chaos of the airport.

While you may have met one or many of these comforting canines, chances are that you haven’t yet met the newest member of the Wag Brigade—LiLou—who made her debut at the airport just last week.

LiLou is a spotted Juliana pig, and is the first certified therapy pig at the airport. She’s being treated like a wandering celebrity by all who meet her. Strolling the halls with her tutu or airline pilot costume and polished toenails, LiLou is more than just an “ordinary” pig. She’s hypoallergenic and multi-talented: able to dance, play a toy piano, stand on her back hooves, and more.

Whether somebody has sensory process disorders, developmental challenges, a fear of flying, or just wants to say “Hi” to LiLou, she’s there to calm nervous flyers and interact with everybody. LiLou doesn’t yet have a schedule, so her visits are currently a surprise. But if you’re flying to or from San Francisco, chances are you’ll meet another member of the Wag Brigade, there to bring a much-appreciated calming presence. And you can follow LiLou on Instagram at @lilou_sfpig.

Miriam Gwynne

When Your Child Won’t Eat at Christmas

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I could have stopped this title early and just said, “when your child won’t eat.” That is my life, but somehow at Christmas it just seems so much worse. Ask people what they associate with Christmas Day and, after presents, Santa, and perhaps family, many will answer “Christmas dinner.” Advertisers have a field day this time of year, promoting the ideal family Christmas dinner with turkey, roast potatoes, stuffing, and all sorts of vegetables and trimmings.

My daughter won’t eat any of that. She hardly eats at all.

Every day is a battle for her. Food is like some sort of enemy and, at eight, she is often still spoon fed.

She has no appetite and that does not change just because it is Christmas.

It isn’t even just Christmas dinner that food companies try and entice us with at this time of year. There is a huge market for selection boxes, boxes of chocolates, biscuits, Christmas cakes and puddings, festive drinks and even edible tree decorations. Food seems to be such an integral part of how we celebrate. 

Yet none of it appeals to my child.

Selection boxes would sit untouched in a cupboard forever. She has an Easter egg unopened in the cupboard from April that I will have to throw out at some point. She isn’t ungrateful… she just can’t bring herself to eat any of it.

It is heartbreaking to watch her when we all sit down to Christmas dinner. She wants to sit with us, she wants a plate of food; yet somehow the actual putting it in her mouth is so difficult. The more we focus on it, the worse her anxiety becomes. Now and again, a little amount may pass her lips and I want to dance and cry at the achievement, but that would make things worse.

I have to stay calm. When your child won’t eat, shouting at them won’t make it better.

I could try forcing her. That would make it worse too.

I have tried begging her. That doesn’t work either.

How do you explain to people that your child won’t eat? It isn’t even just at Christmas, either. It is every single day.

We are working through this together and we have made it through another year without having to have a feeding tube. This is huge progress for us.

Not eating Christmas dinner is actually not as much of a worry than the not eating all the time. Christmas just seems to make it seem worse somehow.

So, she will be spoon fed a little yoghurt for breakfast, and she may nibble on a little cut-up banana or a chocolate mini roll later in the day if she is relaxed enough. I will spoon feed her tiny amounts of potato during dinner and a little angel delight afterwards. She will drink a little juice if we don’t dwell on it. It will be a struggle, but Christmas is no different to any other day.

My daughter has an eating disorder that will not go away just because it is Christmas.

I dream that one day she may enjoy turkey, potato, vegetables and all the sides. For now though, I continue to hope that we make it to next Christmas without needing that feeding tube. That is my Christmas wish this year and every year.

Rachel L. MacAulay

This Company Went Above and Beyond to Help an Autistic Child

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sippy-cup1

Marc Carter’s 14 year-old son, Ben, has severe autism. Ever since he was two, Ben has insisted on drinking out of the same sippy cup. He simply won’t take his liquids out of any other cup or glass, and has been hospitalized for dehydration in the past because of this. While this rigidity is obviously a problem, the fact that the sippy cup is wearing out is an even bigger problem. So Marc decided to use social media to try to get a replacement supply of the cups to avert a future disaster.

As Marc first explained:

“Ben is 14 and has severe autism, he’s non-verbal and has very little understanding. Since the age of 2 he has drunk exclusively from a little blue Tommee Tippee two handled cup.

Fortunately about 3 years ago we managed to replace this very old and disintegrating cup with a newer one – cup part first, lid a few weeks later. He was suspicious but we survived.

No big deal right? We can just get something else! At that age he should be drinking out of a glass!

You’d think eh. Ben hasn’t drunk at school since the age of 5, he doesn’t drink outside of the house so we can’t go anywhere. People say he will drink when he’s thirsty, but two emergency trips to A&E with severe dehydration say otherwise.

These cups are not made anymore, the replacements are all new and fancy, we’ve tried them, Ben throws them at us. Maybe you have one stuck at the back of a cupboard? It can be used, that’s fine, the one he has doesn’t have long left. In all honesty we are really worried what will happen if it falls apart completely. Can you help us? Please share this far and wide, you can find me on twitter @GrumpyCarer. We will happily pay for the cup and postage, and we would love more than one if we can find them.”

His tweet, with the hashtag #CupForBen, was retweeted more than 1,200 times and his story was spread by major news networks. While many offers of replacements came in, most of them weren’t the right cup, unfortunately. And then Tommee Tippee, the manufacturer of the original sippy cup, stepped up to the plate.

Company staff in Hong Kong, France, the U.S. and Australia looking for the cup in their warehouses eventually found the original mold design. As they explain on their website, the company not only helped coordinate the delivery of cups from people all over the world, they’re also going to produce 500 new cups for Ben to ensure that he never runs out of the only cup he’ll use.

The company said, “It was clear from the beginning that this wasn’t just a cup for Ben, it was a lifeline for him.”