Summer Time Blues

  I'm so far behind on my blog I'm going to include 3 videos!

 

 

 

  In the first video,  I drove up to Spruce Lake in the Poconos to talk to people from Joni and Friends, which is a camp for Special Needs kids AND their families. Joni Earikson Tada is well known in Christian circles. She is a radio personality, public speaker and is on TV. She was in a diving accident years ago and is in a wheelchair. Now she heads up a whole ministry to people with Special Needs.

 

They have an office in Philadelphia and they help churches set up Special Needs Ministries. This includes Sunday School classes as well as support groups and outreach to the whole family, not just the children. They are a wealth of knowledge and support. I was a bit overwhelmed with how big this could become.
  Last month someone handed me a book called "Same Lake Different Boat", written by a woman who runs Special Needs Ministries. When I went up to meet the woman from Joni and Friends, she suggested I may want to read a book....you guessed it, same book. She said to contact the author. I haven't done it yet, but I will soon.

 

 

   For now I've decided to start up a support group for parents, open to the community, not just people from church, to gather together and talk, hang out, share information and just feel like they have a safe place to gather and talk and make new friends. I would like to eventually start up a Sunday School class for kids with severe disabilities like Robbie and hire a teacher with a degree of "Teacher of the Handicapped", but for now I'll start with one thing at a time.

 

Episode 47- Camps and Support Groups

 

The following week Robbie had the longest seizure he has ever had, lasting 4 minutes 20 seconds. He was taken to the hospital in the ambulance and when I arrived to the emergency room, he was completely out of it, eyes closed, unresponsive, and frankly it scared me to see him like that. It took a couple hours for him to come around. Whenever we are there, he just wants to sleep, so he turns around on all fours, and pulls the blanket up over his head to make it darker. Then he starts pulling off all the leads, wires and eventually the IV. That's when Mom steps in and goes all "Terms of Endearment" and starts pressing the doctors and nurses to let him go home. They were really good at this hospital and when Robbie started to come around, they sent him home.

 

Episode 48- Seize The Day

 

The next day after the seizure he was tired all day. Then on Saturday I took him to the beach and he was like a new guy! I kept Robbie seated in a chair by the water, feeling that's the safest position just in case of a seizure. Also, my sister in law went with me, who is a nurse, just in case. But there was no need to worry. This is my favorite video of all because Robbie is so happy and playful and you'll see how he teases me and will even hear him laugh!

Episode 49- Beachin'

 



A Walk On The Wild Side

   This summer has been pretty nice, I must say, for New Jersey weather. Usually we get intense heat and humidity in the mid '90's. But this year it's hovered around 80* making it really pleasant all summer

 

. Every weekend I try to come up with something to do that Robbie will enjoy to keep him moving, keep him busy, keep him happy, so that he will enjoy our visits and look forward to them. As long as we have good weather, it's easier to find things to do!

 

 

   This week my sister was taking her two daughters, ages 2 and 8 months, to the zoo and invited us to come along.

Robbie really isn't interested in animals, but he does enjoy people watching! So he likes to go anywhere there are people around.

    I haven't been able to figure out why some things he likes and others he doesn't. But I have found that he enjoys pushing shopping carts. Usually he walks way too fast, and is in way too much of a hurry to get out of places we visit, but pushing a cart slows him down and makes him keep a steady pace, and somehow he knows he has to stop and wait. I credit his wonderful teachers in school who took him on outings to the community with teaching him this skill!

 So I had him push the stroller at the zoo and it worked! He kept a nice pace, waited appropriately, and did really well. At the end, we rode a choo-choo train, and that was like a reward for good behavior all day! He almost even cracked a smile. :-)

At the end we split from my sister, and since there was no more stroller to push, he lost patience and he started to sit on the ground to show his protest. That's when I knew it was time to go home! LOL

Here's our visit to the Turtle Back Zoo. Robbie didn't look at the animals, but I think you'll enjoy watching them!

Episode 44 "Trip To the Zoo"

 

Patti comes to visit/Seizure Center

  Summer time is all about sunshine, swimming pools and rides on rollercoasters. Well, our life is always a rollercoaster! This week my daughter Patti comes to visit.

 

 

I mention my daughter Patti a lot in my videos because she is a Teacher for Autistic Children. Growing up with a brother with Autism gave her on the job training her whole life! She is exceptional at what she does. She has a natural intuition with her kids that you would probably expect.

 

    In "Patti's Visit" she flies in from North Carolina with her husband, and on Tuesday we spent the day at the beach. She talked about teaching and mentioned how she is lucky enough to have a meeting room attached to her classroom that she has converted into a break room for her kids. They can earn breaks after doing school work, but it's also used for when they get overloaded and have behaviors and meltdowns. One of her students likes to rip things when he gets upset and she had an idea, "Maybe we could come up with alternative things he could rip when he's upset". If you saw my "Father's Day in the ER" episode, he had ripped the shirt of an aide, and when he came home with me, he ripped my shirt too.

    Patti and I met with Biancha, Robbie's Behavior Specialist to brainstorm and come up with alternatives for Robbie. Patti really stressed how well her break room was working, so we are hoping that as they are building Robbie's new house, maybe we can get them to create break room. I don't know if this will happen, but it can't hurt to try. Patti and I then went shopping to come up with an idea for a "ripping toy". You'll have to watch the video to see what we came up with.

Patti's Visit

  The big activity we had planned was to take Robbie to Dorney Park, which is a Water/Amusement Park in Pennsylvania. They give special passes for people with Special Needs so they don't have to wait in line! Woo hoo!  But unfortunately Robbie had a seizure, and needed to see his Neurologist.

So instead of fun footage, I decided to talk about Robbie's seizures. I'm hoping there is some useful information for parents in this one. Robbie never had any seizures until he turned 17. I thought we had successfully avoided that part of Autism, but unfortunately not.

 

If you have a child with Autism and you're following us, I hope your child never has a seizure because it's the most frightening thing I have ever seen. But if, God forbid, it does happen some day, remember the information that I share with you in this video about meds.

The Seizure Center

Water Week!

  

     It seems all Autistic kids love the water and Robbie is no exception! Both videos today feature Robbie in the water. I swear if he could live in the water, he would! He is in and out like a dolphin.

 

 

 

 

 

 

In the first video we go to visit my little Godson, Nicky. When Nicky's Mom was pregnant with him, the Doctors told her he would be Mentally Disabled and to abort him. She called me distraught. I told her my point of view which I share in the video. Nicky's Mom even let me interview her about the whole ordeal.

   I took Robbie to Nicky's fourth birthday party in their backyard. Robbie loves the water, so he went and got in Nicky's kiddie pool. He was mellow at first, but then you'll see it turned into a full out water gun party and Robbie had the biggest smile on his face ever!

July 4, 2014

 

   July 4th fell on a Friday this year so it was a whole weekend event. Robbie's group home called me on Wednesday to ask if I was planning to take him home for the weekend. Ummm, no! I didn't know I was supposed to! But everyone else was going home and there would be no staff, so I had to scramble to find something for him to do!

 

   I sent out an S.O.S. on facebook and thankfully I got a response! Day 1 we went to a cousin's house who also has a daughter (my age, much older than Robbie) with Special Needs who lives in another group home. They have a pool for their daughter and we went there. Robbie really enjoyed it.

 

Again, something else I didn't plan, was to go swimming. I did not bring a bathing suit and just sat on the edge of the pool as Robbie swam. Well, he decided I need to come in!

   The next day we were invited to a friend's house who just put in a new pool for their Autistic son.

 Robbie loved it. You'll see he is in his glory! This is probably one of my favorite videos of him because he is very mischievous and very happy!

"Little Brother"

     In today's blog, I want to focus on my youngest son David.

 

 

 It's not easy being a younger sibling of a kid with Autism. Robbie's sisters were 5 years older than him, and were built in babysitters. They babied Robbie and took care of him. Their friends were also babysitters, and one even became a Teacher of children with Autism.

 

 

 

   But David was 5 years younger than Robbie, and was afraid of his tantrums. His friends were afraid of this strange noises and banging and so David really never had any friends come over to play. When Robbie had his first seizure, David was traumatized. We set up a procedure that every time it happened, David would run next door so he wouldn't have to see the police and ambulance arrive. Robbie started making himself sick every weekend, so it became a regular event every week that our house went on "Red Alert".
    It wasn't until David went into High School that everything changed. Robbie went into a group home David's Freshman year. The following year, David grew to over 6 feet tall and switched from soccer to football. His confidence grew as large as his stature.

   June is the month of Father's Day and Graduation. In the last blog we focused on Father's Day. This time, I'll talk about Graduation. When my girls went to prom, we took photos on our front steps. In their Junior year, Robbie was shorter than them.

A year later we took the same photo, but I could see how much Robbie had grown in a year! David was in Kindergarten in the first photo, and in first grade in the second!

 

I tried to reenact these photos for prom for David, but it didn't work out this year. I have to call his group home and schedule everything, and things never seem to ever go right. You'll see in the video.

 

Senior Prom

 

 

I can't believe where the time has gone!

 

 

When David graduated, I didn't bother having Robbie brought to his graduation ceremony because they would probably show up too late, and he wouldn't want to be there anyway. Seeing David in his cap and gown made me remember my daughter Patti's graduation from college.

 

 

We brought Robbie up to Massachusetts and left him at the hotel with David and Denise and it was a total disaster. I talk to David about it in this video. The  hardest part to hear was when he says he was always afraid of Robbie....until he grew bigger than him.

 

David's Graduation

 

 

 

     After graduation came Father's Day, and you'll have to go back to my last blog to see what happened then. Robbie had a behavior and ended up in the Behavioral wing of the ER of the hospital. I had a really, REALLY stressful two weeks. Then, we had to take David to orientation at his new college, Salve Regina University in Newport, RI. It's such a beautiful place and I enjoyed getting away for two days. Everyone who has ever been to Newport loves it and talks about the Cliff Walk and the Mansion Tour, so I thought I'd take you on a little tour. I tried to fade into the background and just act like a "normal" family for 2 days, but it wasn't that easy.

 

Salve Regina

 

 

 

It hasn't been easy being part of this family, but I believe it's made us all stronger and taught us many life lessons. Like being more compassionate and understanding, and that material things are not that important. I encouraged my daughters to go into the field of Special Education or Occupational Therapy, and one of them listened to me. LOL. I told David he should become an attorney and work helping to fight for the rights of people with Special Needs. But instead he's going to play football and go into the sports field. Oh well, you can't win them all!

 

 

Father's Day in the ER

"Happy Father's Day. Your son is in the hospital"

 

    
As usual, we ride the rollercoaster! When you have a kid with a disability, this kind of thing becomes the new normal.  Robbie didn't want to go to church that Sunday morning, and since he can't speak, he acted out instead. It's like a two year old throwing a tantrum, only he's a lot taller. I got a phone call after I got out of church myself that he was in the hospital.

 

 

Prepare yourselves if you're emotional (Moms!) because Robbie starts to cry in this one. I tear up every time I see it! LOL It's even harder to watch because he rarely ever cries. The last time I saw him cry was when he had a seizure and they took him to the ER, and when I got there I saw that they had him on a stretcher in the middle of the hallway and he was crying. He hates being in the hospital. Who doesn't?

The procedure when someone in a home has a behavioral incident is usually to admit them, for days, weeks, even months. I refused. I said "No" and told them to discharge him to me. He stayed home with me for two days.

 

Here is the first video on Father's Day. Episode 35

 

 

I took him home with me, and he was not happy to wake up there. He probably thought I was going to keep him in the house all day, and he wanted to go to his day program. We had a rough morning. But he went to his program and was much happier when he got home in the afternoon. That night I had to take him to one of his many specialists. We went to a Physiatrist for his feet.

 

 

Here is day one at home, episode 36

 

 

By the second day, I was starting to lose it. It really had nothing to do with Robbie. I was stressed out about work, the phone was ringing non-stop, and I was reaching my breaking point! But that night the Psychiatrist gave Robbie the OK to go back home, which made him very happy.

The next day we had an IDT meeting and I received really good news, which made Mom very happy!

 

 

Here's the one with the good news at the end. Episode 37

 

24-Broken Things

 

 

    Years ago I went to a fancy dinner party at a friend's house. She is sort of a Martha Stewart type. Everything in her house is perfect. She loves to decorate and set a beautiful table. She cooks a gourmet meal with special place settings at the table. When I go, I am sure to use my best table manners.

 

   During dinner, a Christmas wreath hung over the buffet suddenly fell and broke one of her serving dishes. She was so shocked and upset that she couldn't even speak. I understood why she was upset, however from my perspective, broken dishes were a normal thing in my house. If it had been my house, I would have blown it off, picked up the broken pieces, and finished dinner. I probably would have even laughed and made a joke. Actually, if it was at my house, we probably would have been eating on plastic dishes or paper plates, because that's what our life was like!
  The truth was, during the years Robbie was growing up, we rarely had anyone over. The house was too much of a disaster and it was too stressful to cook for people, and the messy house was embarrassing. Robbie had broken a lot of things in the house. He slammed the doors so all the doors were broken off the hinges, he broke my kitchen cabinets, all my dishes, videos, VCR's, video cameras etc. But you know what? It taught me something. Material things just really aren't that important!

 

    I don't worship my house or my car or my things. I don't need to keep up with the Jones's. It's trivial nonsense. Remember, I do Interior Design and I am in hundreds of beautiful homes all the time. So this was a really hard lesson for me to learn. Sometimes I got depressed over it. But I had to remind myself to remember the big picture of what life is really about, my family. People are important, pillows are not! LOL
    In today's video I'll show you old video and pictures of things Robbie has broken over the years. It's not to complain, but to show other parent's of Autistic kids that they are not alone, and there are other people out there that live the same way. And my other point is, to those parents, don't be like me and wait until things are so bad and "broken" beyond repair that you can't take it anymore. Don't wait to ask for help.

23-Movie Night and Mother's Day

I don't think I've seen as many rainbows in my entire LIFE

as I have seen this month of May, 2014!

 

 

 

My son David plays baseball and many nights we were watching the sky, concerned that lightening would be on it's way. They would stop the game for a temporary downpour and then the sun would come back out, we'd see a rainbow, and resume play.

 

 

 

 

This seems to be the story of my life with Robbie. We have ups and downs, good days and bad days. He may get sick, or get violent, but the episodes quickly pass and when he smiles he can light up the whole world.

His smile is as beautiful as a rainbow!

 

 

I could get really philosophical about this, but I'll keep it light. But rainbows really are a perfect example of how we can weather through a violent storm, and then witness something truly beautiful as the sun shines once again. I am amazed even as I watch my own videos how our lives daily dip up and down, and how quickly they turn from good, to bad, to good again. Like little mini thunderstorms. But then as the clouds dissipate, a ray of sunshine peaks through, and sometimes, we have great days, as beautiful as rainbows.

 

 

 

 

 

   In our first video I take Robbie to movie night at church. This is typically for families of little kids who come and lay down on blankets and watch cartoons. But they have Robbie's favorite things:

Pizza, soda and Disney movies! So I took him. While we were inside it poured and when we left there was a big, huge, beautiful rainbow in the sky on our ride home.

 

MOVIE NIGHT

 

 

Next is Mother's Day. We had beautiful weather that day so my daughter Denise suggested we take Robbie for a ride down the shore. Now, some may say "to the beach" but in New Jersey, we say we're going "down the shore". The water's too cold in May, but he enjoyed sitting in the chair watching the waves. The whole day was wonderful until I took him home and no one was there. He got annoyed that he had to wait and didn't want to get back in the car, so he ran away. I won't tell you what happens next, you'll have to watch and see!

 

MOTHER'S DAY MISHAP

 

Like I said, life is full of rainy days, as well as sunshine and rainbows. There are ups and there a downs, literally! LOL

I hope your life gives you many rainbows!

 

22-Easter Weekend

 

    What a wacky weekend! On Good Friday Robbie was off from his day program. Being off on holidays is always a problem. As you'll see in the video, by the time the night time came things were not going well. I picked him up on Saturday morning and had to take him home for the weekend. My mission? To make him smile!
    We went for a ride and ended up having a very nice day on Saturday. We went to visit a friend and he was so happy and content there that we stayed a couple of hours. I was actually shocked that he was so happy! My sister, who had a baby not too long ago, (You'll catch a quick cameo of her husband and baby in the background) does photography, and we had her come over and take some photos. We finally got a good shot (shown above) and used it for a Thank You card for our fundraising party. (Check out our last blog to see the party video) Boy, it took a while to get a photo because he doesn't understand that we want him to smile! He's not quite smiling in the photo, but almost. I still think it's cute.

 

 

       It's funny how he falls right back into his old routine as soon as he's home. He heads right up to bed when he gets tired, and woke up early Sunday morning, grouchy and full of energy. I had to "work" singing and leading worship for church on Easter Sunday so I had to run him around and boy was it a real fiasco! Watch to see what happened.

 

21-"Mom's Birthday Fudraiser"

   

    April is Autism Awareness Month. For a couple years I had an idea in my head to invite different bands that I knew to all come together and play music in the same place to each play a set and do it as a fundraiser. So for my birthday, I rented the local Italian American club, had food donated, and invited musician friends to come play music. In between sets I taught line dances. As I was reviewing country line dances on YouTube I found a couple new ones on line, like "The Wobble". My kids told me it's the hottest new line dance (Think "The Electric Slide" and "The Macarena") that they do at weddings and Sweet 16 parties. So of course I had to learn it and teach it. It was so much fun!

Are you ready to party?! Here's the video!

     

    The theme was "Light It Up Blue" which is the big campaign by Autism Speaks. We used blue lights, blue candles and of course had blue drinks! We had a blue Hawaiian drink at the bar, blue cupcakes and blue cake pops. It was just an all around great day. Robbie came and ate and danced. If you follow my vlogs you'll know how much he loves music. When we played "Wagon Wheel" by Darius Rucker I guess he recognized the song and  went out onto the dance floor all on his own and started to dance. It was so cute! I wish I had video but I don't. I only have a couple photos someone took with their phone.

       In lieu of gifts I asked people to donate to the Hope Autism Foundation to help fund a new day program. We raised over $3,500. It was so much fun I think I'll do it every April. This first one was a trial run. But next time I'll get more elaborate and charge admission at the door, and do basket raffles etc. to raise more money.

  

 

.If you're wondering

"Who the heck is this person who does these vlogs?" LOL

Here's the video I showed at the party, the story of my life.