"We Will Try Again": On Trying to Have Nice Things When you Have a Special Needs Child.

Sorry for the dark picture.

The other day, after having a blank wall for months, Jon came home with this beautiful work of art and said 
"we will try again." 


The last couple of paintings displayed in our living room were destroyed by Dan. He either broke the frames or peeled paper or paint (depending on the work's medium) off of them. As a person who works in a museum, I felt physical pain when I saw this happen and resigned to not having any art work in the house. "I work in a museum, I can see art there", I told myself. 

The other day, a friend told me, "you must be someone who loves beautiful things." Well, I do, but I know it's difficult to keep them in tact in the house with Dan running and jumping everywhere. My house is pretty plain. I have no grand displays of art,  picture frames, or beautiful objects. 

When hubby brought this work to the house, it was like he was bringing a new baby home and I was hoping and praying  my older child did not hurt it. Art IS my baby! Don't hurt my baby! Dan needs to be taught. 

I love my husband because he refuses to give up on us having a house filled with the things we love. For me it's paintings and for him, fish tanks. He constantly asserts that  we will not play down to his autism. "Autism shmautism", he says, "he has to learn." I have to learn too. With Dan, repetition is key, and I tend to give up too fast.


I'm grateful for his persistence. If art is my baby, I need it close to me. I don't want to settle for visitation rights. 

Now hubby wants us to get a dog...hold up man! One beautiful thing at a time. 

Tips on Navigating a Museum/Gallery Space with a Special Needs Child

As a museum educator with a special needs child (SNC), it is no surprise that I am interested in museum access.  During winter break I usually take my boys to at least one museum; a children's museum or an art museum with programs for special needs children. This week, however, I veered off script.

For weeks I have been wanting to catch an art show at a nearby gallery. Although this art space was not ideal for my youngest son who is on the autism spectrum, I felt that my older son would benefit from this display as it was in line with what he was learning in school. But again, this was a regular gallery, a college art gallery, a gallery that has no provisions for a special needs child so do I dare take my sensory needy, touchy feely, restless child to this kind of gallery?

I bit the bullet and did it. But not without some planning. Here are my tips on how to to enjoy a "typical museum gallery" with a special needs child like mine:

1. Keep it local

It just so happened that the exhibit I wanted to view was in my borough, this worked out great for us.  If you want to spend the day looking at art with your SNC, check out local galleries and museums. The commute is shorter, and should things go south, at least you will be close to home. 

2. Call ahead of time

I was already aware of this particular gallery's space and knew it would be a good choice for us. Calling ahead and inquiring about the gallery/museum's physical layout and what they have to offer, cuts anxiety and helps you be prepared. 

3. Choose a small gallery or museum

A smaller space might provide a sense of calm for your child and help you navigate the area better with him/her.  It also gives you a sense of completion. This helped us this week during our visit. I got to see every single art work which made me feel quite accomplished.  

4.  Early is best

Arriving at your destination earlier in the day also provides a sense of calm as there will be less people, less distractions, and less sensory overload. 

5. Put something in your child's hands

My son loves to touch EVERYTHING and EVERYONE. That's who he is. So if I take him to a place where there are objects begging to be touched, I better offer something that is as equally enticing. My son loves strings so I usually give him a string when we go out to keep his hands busy and keep him from biting himself, which is another issue. But you might also consider something textured,  one of his own paintings, a sensory toy,  anything that will keep his hands off the art work.  

6. Plan to eat afterwards

If you managed to pull this off, it's time to celebrate! I knew there was a pizza place located right across the street from the gallery so the plan was to eat there afterwards. Unfortunately I didn't follow rule number three and by the time we left the gallery, it was well into lunch time and no seats available in the restaurant. If I would have followed my own advice, and left a little earlier,  this would have worked, and been the icing on the cake. Instead, we ate at a place closer to home which turned out okay, thank God! 

I hope some of these tips can help you enjoy art with your SNC even if the museum/gallery is not as accessible as you would hope. In less than ideal situations it's always about finding a solution and enjoying time together with the ones you love. 

Sometimes the Invitation is Everything!

Two weeks ago, I wrote a post, Special Needs Mothering and FOMO (fear of missing out). I posted it on my Facebook page  and prefaced it with this statement, " I wish I could go to all the events Iam invited to but as a special needs mom, I just can't, but please don't stop inviting me!"

It is my hope that people would understand the value of the invitation, how huge that is. Even if you think or know we can't go to your event, it means a lot to know that you still think of us, that we are not forgotten, and when we can't make it, that I/we are missed. 

In the past I have heard, "we didn't invite you because we know how hard it is for you to get babysitting" or "it was last minute, we knew you wouldn't come."  I don't want to hear that. Yes, if you really want me/us, to attend your event, please do try to invite us with enough time for us to attempt to find a babysitter. But even if it's last minute, reach out, we might be able to swing it, and if we can't, sometimes the invitation is everything!

No hay dicha completa: The Christmas Show that Was!

No hay dicha completa. That's what my mom always said. It means that bliss is never complete. There is no such thing as everything lining up so you are completely happy. 

Last year around this time I wrote about the Christmas show that wasn't. You can read it here. In a nut shell, I wrote about how excited I was to have snagged a front seat in the middle of the auditorium which would surely position me to have a great view of my Dan performing. Well, what had happened was that Dan refused to get on stage and I was devastated. I got a clear, beautiful picture of Dan's class performing, sans Dan. This year I got a horrible seat and a blurry picture of a moment that was, for me, sheer bliss.  

A week ago,  I was so excited to be attending Dan's Winter Holiday Extravaganza with hubby. He rarely gets a day off and it just so happened that he was free the day of the show. It was a no brainer, we'd go together and have a great time!  We laughed and joked in the car on our way there and, although it was close to curtain time, we weren't worried. We managed to get there 10 minutes before it started, enough, in my mind, to still get decent seats. Hubby dropped me off so I could secure them while he parked. 

Well, it looked like a zoo when I got  there. As I was entering, the parent coordinator told me "it's crazy in there, it has never been this packed." My heart sank, "I'm going to end up all the way in the back and not be able to see Dan!" I thought to myself. Well it actually wasn't too far from the truth. Although I got two seats in the middle of the auditorium, they were pretty far back. It could have been worse but I wanted to be in the front! I felt a tantrum coming on.  

When Jon finally arrived, I signaled to him where I was but it was a tight squeeze and he preferred to stand in the back. So there I was sitting in the back, by myself. I couldn't even see Dan in his usual seating area. Then I began to wonder, is he even going to perform? 

Two days ago, I sent a message to the teacher in the communication book wondering whether he needed special clothes for the performance. She never responded. His teacher and I have been having some communication issues. A future post might read "the communication book that wasn't." Prior to this year, Daniel had the same teacher for two years in a row. I liked her, I was used to her, we communicated well. We had a system. This year it's different. I am not used to the way his current teacher communicates; through sheets, and class project announcements. She's allergic to the communication book. We had an uncomfortable teacher conference about it and ironed some things out but I wondered, did she not respond to my request because he was not even performing? 

Then it started. Thoughts began to run through my head and my mind became a dangerous neighborhood. I didn't have hubby next to me to calm me down, he's usually my sounding board, the voice of reason when it comes to my kids, because, when it comes to my boys, mama bear gets crazy. There I said it, as a feminist, I hate to admit that but it's true. Anyway, I texted him to try to have him get a hold of myself but the reception was poor and the texts kept coming back "message not deliverable." I guess we were having communication problems of our own. Then I went there in my mind, "It was on", I thought. I am not very confrontational but I told myself, "if Dan doesn't perform, I am going to let that teacher have it!"  I might even go to someone above her and complain. She was going to hear what I had to say, she was gonna pay!" I felt like Richie Cunningham, all I had to do is add the word "bucko!" If you're too young for this reference, google it. 

Then it happened, the cutest little guy stepped on stage dressed in a Santa suit. He pranced and swayed back and forth his para keeping up with his rhythm. He truly was jolly and brought plenty of cheer, at least to my heart.  I managed to take one blurry, distant photo but decided to just watch, my  eyes fixed on him, holding the memory in my head. All was resolved and all were absolved. My Dan looked happy and that was all that mattered to me. 

After the show, I wanted to try to say hello to Dan, I wanted to congratulate him, for him to know I was there.  But it didn't seem like it would happen. We were blocked from all sides as people filed out and I thought that if I didn't get to see him it would have been okay. I had already had my miracle moment and I was content. I turned to hubby and told him "Dan is so far ahead, I don't think we will be able to catch up." Then I heard a voice say, "don't worry, I'll tell them to hold the line so you can say hi." It was his teacher, his current teacher. I heard her loud and clear, no miscommunication at all. I told her she didn't have to, that I didn't even know how he would react, that he might think I was going to take him home and I had to go to work and I didn't want him to cry...."What's wrong with me!" I thought, "the woman clearly wants to do something nice for you, just let her!"  She assured me it would be fine and that she would deal with the melt down if there was one. Her stock immediately rose in my eyes. We caught up, we hugged Dan really tight, told him how proud we where of him and how much we loved him. I was on cloud nine. Hubby and I walked back to the car holding hands, happy.   

So here I am, left with this blurry photo of a child, in the midst of many, dressed as Santa. It really could be any kid. If I told you it was a reindeer dressed as Santa, there was no way to disprove it. But I know it was Dan, he was on stage and was happy, I had a great communicative moment with his teacher, and I shared it all with the love of my life, even though he was all the way in the back. No hay dicha completa but at the end of that day, somehow, I did feel complete.  

Happy Holidays/Merry Christmas! 

Summer Vacation and Special Needs: Why We Go Despite it Being So Stressful

I came home from summer vacation more drained than before I went. It was tough and sometimes I wonder why we do it. Let's face it, sometimes, when you have special needs kids, it is easier to just stay home. They crave routine and are familiar with their surroundings. At home, Dan has the run of the place. We've already secured rooms and important things so I can be at my computer or the sewing machine without worrying that he will get in a bit of mischief. He will usually entertain himself for quite a bit without asking me to get up for food or drink. 

Outings are another issue but I do it anyway going to the occasional museum, zoo, or park. Holding on to him for dear life and nervous that he might escape, but I still do it and I feel he sometimes gets more out of these city outings than vacation.  For some reason, going on vacation without having these safety nets  for a couple of days gets overwhelming for me. So why do we do it? Here are seven reasons why:

 1) It's fun getting there

It takes us about 2 hours to get to our destination. During that time I sit in the back with the boys because our aunt rides in the front seat. Yes, our aunt comes with us but she is adamant that I not include her in anything on the "internet" so I won't talk too much about her. I am usually in between them and I get to enjoy cuddling with Dan and talking to my oldest. He's a talker now so I get an earful. We talk about school, sports and play trivia games. We simply enjoy each other's company without any distractions.

2) It's beautiful scenery. I am very visual and the place we go to is beautiful. Nuff said. lol

3) The boys, especially Dan, love the water and get to bond with Dad

I am not a water person. I don't know how to swim and I rather just spash around than immerse myself in a  pool so it works splendidly that my husband loves the water and enjoys this time with the boys. My oldest, who usually is scared of the water, really enjoyed it this year which goes to show that sometimes you have to keep trying. 

The down side  to all of this is that instead of taking pictures, I should have been sitting down on a chair and reading my magazine. By the time I sat down, Dan had already had enough and only wanted to be with me. Next year you might not see any pool pics.

4) I experience the kindness of strangers.

You might wonder why Dan has a pink vest with pretty flowers on the side, or maybe not but it would not have been our first choice of color. Well, we forgot to buy any floating water gear for Dan. Last year we did fine with the  noodles provided by the pool but apparently Dan got bigger this year and they were hard to tie around his torso. When we did manage to tie it, it just kept getting loose. Well, a nice man must have seen us fumbling around because he came over and offered to lend us his daughter's swim floaty jacket. I don't think his daughter was too happy because she kept watching us like a hawk but we were so grateful for the kind offer and Daniel enjoyed himself immensely.

Also, the kind man I always talk about, (I mentioned him in this post from 2012) was at the merry go round again this year and he again recognized us and refused to take our tickets when offered. I think I love him. Which brings me to the next point.

5) I don't own a merry go round or other carrousel rides.

Dan just absolutely adores merry go rounds. My oldest, not so much, he detests rides. So yes, I could take him to Central Park and pay an arm and a leg for several rides while the older one just watches but it's nice to have this time of unlimited rides with Dan. My oldest was off playing miniature golf with his aunt so I had no pressure to stop because he was waiting for me. 

Oh, and I again, got my special bracelet which lets everyone know I am riding with a special needs child. I think this is cool. 

6) I got to see D again.

We have been coming to this vacation spot for the past 4 years and I met this lovely woman, the second year we came. She was the housekeeper assigned to our room and we bonded immediately mainly because I speak Spanish. Most people in this establishment are of Irish descent and I, with my big curly hair, immediately stick out. Last year someone thought I was a worker and asked me to bring them juice at their table. lol. Anyway, when D realized I spoke Spanish, we were off talking about everything! She asked me about Daniel and I immediately told her about his diagnosis, she was so kind and offered hope as a friend of hers also had a child with autism. She shared about her family and some of the struggles she has been through. So when we arrived and we saw each other, it was like reuniting with an old friend. Although she isn't smiling, she is super pleasant, funny and such a hard worker. It was great to see her again and to know she is doing well.

7) My oldest made a friend

I didn't want to post his friend's full picture as I didn't get permission from his parents to post it.  

This, for me, was the best part of our vacation. If you have read my blog for any length of time, you should know that my oldest is also on the spectrum although many people would not know it since he is extremely verbal and is practically mainstreamed. These days we are mainly dealing with social issues. Usually, he spends vacation with just us but this year, he met the nicest boy who was a year older and they immediately bonded over sports, my oldest's favorite topic!  I could not have planned it better myself. They talked in the pool, on the balcony, a little during breakfast, and they did it all without me prodding, coaxing, or my monitoring my son's behavior. He was totally appropriate,  friendly, and sweet. This made my heart sing! Before we left they exchanged addresses and promised to write to each other. This gave me so much hope for my son's social future!

So this is why I might continue going. Dan comes back wired and its hard to get him back in a routine. He is now pacing feverishly and screaming for soda which we let him have because well, he was on vacation too, he should have some fun, but we're paying for it big time now. 11 days until school. But whose counting.

Christmas Show, Special Needs, and God with Us: Thank You Very Much Mr. Roboto

Patiently waiting for Dan's class to perform, this was two or three classes before his. 

On Wednesday, I got to my younger son's Winter Concert on time! I was so proud of myself. It's usually packed and I always end up sitting in the 5th or 6th row because, yes, I am usually late. Not this time. I got there extra early and landed a seat in the second row, square in the middle, with no big person in front of me! Also, after looking at the program and realizing that Dan's class was one of the last ones to perform, I saved all my iPhone's battery life for countless photos of his class performance, I was so excited!

I watched performance after performance and then, finally,  Dan's class was next. There I was, camera in hand, positioned motionless so I could capture the perfect shot the moment he hit the stage. My Dan is a ball of energy that jumps, runs, and fidgets at every moment. Many of my pictures of him are mere blurs so this preparation was quite calculated. I figured I would be able to get at least one good picture of him for me, and yes, Facebook.

Dan's class, sans Dan. You can see a little glimpse of the kids dressed as trains.

The music for his class performance started and I began to look for Dan. I looked, and looked, but there was no sign of him. I smiled, masking my anxiety, as the music kept playing and the kids kept coming out in their costumes. I wasn't sure what he was supposed to be so I didn't know what to look for.  First, kids dressed as trains, came out; then others dressed as rockets. The next batch were teddy bears, and lastly, the robot kids. The music ended, his class performance was over, and still no sign of Dan.

I couldn't understand it. Did I miscalculate? Was his class actually the next one to perform? Was he so well disguised that I had missed him? Didn't I see his class heading to the stage? Then I spotted him with his paraprofessional (para), heading back down off the platform. My heart sank. I knew something must have gone awry. I silently started to cry as the music started playing for the next act. Tears rolling down, I started to get in my head, "couldn't his para handle him?" I thought. "This is a special school, aren't they supposed to be able to deal with kids that have sensory issues and are hyper?" The show was not over but I just wanted to leave. I thought of how I could make a grand exit to show how pissed I was and then write an angry e-mail to his teacher about how they broke a mother's heart.

Photo courtesy of http://shu-media.co.uk

Then I took a hold of myself as I felt a calming presence over me. I looked back and Dan was sitting nicely with his para. I decided I was going to go over to his class and find out what happened. When they laid eyes on me, both his para and teacher had these apologetic faces on them. Before I could say "What the hell happened? They started, "Ms.______, I am so sorry, we tried everything and Dan just refused to go on. He ripped his robot costume off and started to cry. We really tried!" Ah, so there it was, he was supposed to be a robot. That puzzle was solved. I could feel my anger melting away. I couldn't hold it against them. They have a very good track record with Dan. I truly believed they tried their best. I couldn't help, though, to continue to ruminate; this is a class of 6 year old autistic children, could they have placed them ahead of the middle schoolers? Couldn't his para pack some snacks to keep him calm? Aaah, if I was going to to salvage this day, I had to decide to let it go. There was no time for what-ifs and recalculations, I sat down with Dan, bopped him up and down on my lap to the rest of the musical numbers, and enjoyed him. He was smiling and laughing; clearly, he was happy to see me. 

Then I realized, "of course! Dan is not a robot!" I can't just press a button and expect him to perform at will. No wonder he ripped that robot costume off! It was his own little performance art piece speaking against the constraints of society. What an extraordinary act of defiance. The boy is genius! Lol.

That act of defiance spoke to me more than the planned performance. No, I have no picture to show off, and I don't have the "he looked so cuuuuute" story to tell my husband. What I do have is a boy who is his own person. A boy, I need to continue accepting and loving for who he is. A boy that teaches me not to be a robot myself, to live my life to the fullest (John 10:10).

Photo courtesy of Britton Church, http://www.brittonchurch.com

I love Christmas simply because it is a reminder that God is with us; Emmanuel. This is what this season is all about. God is with me in this journey. Through the tears, the pain, the joy, the lessons of life, He is with me. He became human to share in our struggles and experience what we go through. And because we are human, not robots, He gives us the choice to be with Him. He never pushes, but shows up, ever so gently, at the right moment. Like the moment I didn't see my son on stage. He is with me and I, also, choose to be with Him.

Merry Christmas/Happy Holidays.

Sew and Tell: Striped Jumpsuit

I designed and constructed this striped jumpsuit in July but finally got around to photographing it this past Friday when I wore it to a workshop on special needs services. This is why I love jumpsuits. They are so versatile. I have worn this to church, to workshops, outings with friends, you name it. Jumpsuits are slowly, but surely, becoming my uniform. 

It's hard to see here, but it is actually black with green, tiny stripes. It also has an origami-like fold over neckline, pleated details on the shoulders, and front pockets. 

 Here it is, full view. Sorry for the grainy photos.

The left photo shows the pleating on the shoulders. If you follow my blog, you already know that if I can avoid doing zippers or buttons, I will, so I decided on a back tie opening. I like dressing modestly, so I always wear a black tank top underneath but it looks sexy and cute without it too, maybe i'll try it one day when I am out with my hubby.

Oh, and here is my leather cuff I made from a boot! Check out the tutorial here. 

There you have it. Once in a while I like to take a break from refashioning/reconstructing and sew from scratch to work out my fashion design muscles. 

Vacation, Special Needs, and What I Wore

Vacationing with a special needs child can be tough. I often wonder if it would be easier to stay home; routine, familiarity and sensory stuff at our disposal. However, a different environment allows me to learn more about Dan, see how he responds to new situations, expose him to new things, and enjoy him in a different context. So here's a little run down of our vacation, what I wore, and how we all did. 

Dan trashed our hotel room the minute we got there, lol.

The first day, I wore this top I made 2 years ago. I love it! It's a racerback with a draped color blocked front and low peter pan collar. So comfy and great for vacay. 

We spent a lot of time in the hotel pool downstairs. One of the things that keeps Dan calm is water. If he were in water all day, he would be so still and peaceful.

My oldest also enjoys water but is less adventurous in the pool. 

On the third day we made our way to the shore. I loved seeing this sign. Stronger than the storm...

I wore this shirt on the third day.  Small shirt to draped  tank, tutorial here

 Near the shore, we stopped to play miniature golf. Dan was not into it at all and he would not let go of his blanket but it's all about exposure to new things.

My oldest, on the other hand, loved it! He is land, while Dan is sea. Opposite sides of the spectrum indeed. 

Amusement park rides also calm Dan down. He loves motion. Water and motion are his favorites!  Here we are on the same train ride we took last year, I wrote about it in this post and took the same exact picture. This year I knew the drill; I went straight to the customer affairs office and asked for my bracelet, the bracelet that allows Dan to ride free because, well, he's "special".  It's interesting that they put the bracelet on the mother and not the child. Last year was the first year I had to grapple with the fact that Dan does indeed act "special". I couldn't hide behind the the late bloomer label anymore and he outed me as a special needs mom. 

My special needs mom coming out bracelet. 

All in all, we had a great time and it was a much needed change of scenery. 

The end of the summer is approaching. Would love to hear what you all did!   

Deep Pressure Vests: The New Fashion Trend?

Is it me or do these fashion photos scream DEEP PRESSURE VEST! Do these models have sensory issues? My worlds collided as I looked through the fashion magazines I had bought this month. I like when that happens.

December/January 2013 issue of Harpers Bazaar, p. 289

December 2012 issue of Marie Claire, p. 185

These two tops are both by Balenciaga. The first is a leather top and costs $2,150. The second is a cheaper version, a navy top for $1,535.  I guess with the way the world is going, we could all use a little pressure, good pressure, that is, to keep us together! But not for this much money!

Anyway, "deep pressure vest" is all that has been on my brain lately so I am sure that I am the only one that read "sensory needs" when I saw these photos. My little Dan has deep sensory issues which come with his autism. For some children with autism, feeling where their bodies are in their physical space, is difficult. Thus, a weighted or deep pressure vest helps kids like Dan feel grounded.

In particular, deep pressure vests deliver a hug sensation which helps calm hyper-active kids like mine. Studies claim that deep pressure releases naturally calming chemicals in the brain, along with endorphins which stimulate happiness. We could all use a hug, right?

Dan's ABA therapist used a deep pressure vest with him last year during her sessions and I saw that it really helped. Alas, no ABA therapists this year, and hence no sensory pressure vest unless I decide to make one. And make one I will because, like the Balenciaga tops, they are expensive, although not as expensive. 

I did find this affordable one that might work if I decide not to go the DIY route:

Available at www.sensorygoods.com. Not so bad at $39.99-$69.99

 



Available at www.squeezewear.com for  £245 (around US$380)

This one is super high tech with a zip and velcro fastenings and has air pockets. There is also an attached hand pump that allows the wearer to apply and regulate soothing pressure by pumping or releasing air to deliver a hug sensation.

Available at www.lifeskills4kids.com.au for  $199.00. This looks like something I can make. A band and straps, I think that could be pretty easy.

I consulted with Dan's OT and he told me it would be a good idea to make one if I wanted to. I made him a weighted vest 2 1/2 years ago with help from his Early Intervention OT and it yielded good results. I'll show a picture of it on another post. Anyway, it got too small for him and I was going to make him a bigger one but when I consulted with his current OT, he felt that what Dan was craving more was the pressure, not the weight.
There is one home made deep pressure vest that I found on the internet by

http://somethingsewspecial.blogspot.com/

It looks very cool and possibly easy to make. She is also a mom of two kids with special needs. Check out her site, it has other great tutorials too.
Well, I 'll keep you posted on my progress. I'm not sure what Balenciaga had in mind with these tops but for a little while sensory issues and glamour went hand in hand and that's okay by me. Maybe photoshoots like these will make little girls feel comfortable and confident wearing their deep pressure vests when they need it. Especially since there are less girls on the spectrum and therefore, less role models for them. Now I need to find a nice photo of a male model wearing one for the sensory seeking boys out there! Wish me luck!