17-With Love

 

     Tomorrow is Valentine's Day and I saw this post on a Facebook page for advocates of kids with Special Needs.

   This is my message! Many times people want me to talk to other parents who are having a hard time with the fact that their kids have been diagnosed with Autism. This is the message I always give them, and it's become my mantra "Love them the way they are".
   When Robbie was little, I belonged to a Charismatic church that believed that being "blessed" meant that God wants everyone to be prosperous. This was a "Word of Faith" church that was a big movement in the '80's. In their minds, that meant God wants you to be rich. They believed God wanted you to have a big house, a big car and big bank account. If you had these things it meant you were blessed. They also believed you should always walk in "divine health" and preached regularly about being healed. If you were poor or sick, then it was your fault and you simply did not have enough faith.

    In the midst of all of that, my son was diagnosed with being Autistic. According to their theology, if my son had an illness and wasn't healed, then there was something wrong with me. Well, I prayed and asked God what I should do about Robbie and I believe I got this very simple answer from God. I heard in my heart "Love him the way his is". This sounded almost too simple of an answer but I came to realize years later how profound this answer really was. Now, to those who don't consider themselves to be a Christian, or person of faith, they may think this is crazy that I would say I heard from God. But I believe with all my heart that God spoke this to me.
    One day a woman from my church got on my case and told me I needed to be "speaking the Word of God over him and believe for his healing". I politely thanked her for her advice and concern, but said that God told me to love him the way he is. That seemed to shut her up. LOL.
     To Word of Faith people, that may have sounded like I was giving up, or giving in, or losing my faith. But that one sentence has gotten me through the past 20 years and kept my faith as strong as a rock. That simple phrase has gotten me through all the issues and behaviors with Robbie, and has helped me not to be too hard on him, or on myself. It's helped me keep a positive attitude. I am not ashamed or disappointed in Robbie, and I can proudly say I love him just the way he is! I think all his quirky behaviors are adorable. I am never sad in any way that he has Autism and would not trade him for any other "typical" child at all. I know, people don't like that I use the word "normal", but I don't know how else to say this...If Robbie was "normal", or "typical", or not Autistic, then he would not be Robbie!
    Over the years I have seen lots of parents trying to cure their kids of Autism and make them "snap out of it" or "bring them back". I have also seen many of them depressed, or angry, or looking for someone or something to blame for making their kids Autistic. This hurts me to see this. I sometimes wonder how the Autistic child feels knowing their parents don't want them to be this way. I'm not saying we should give up on finding a cure, but I worry about how the kids perceive it when parents want them to change.
     I don't want to change my son, and I don't want to be angry, disappointed or depressed. I love my son...just the way he is. I just want him to be happy and well taken care of. I want him to be productive and have the best life that he can possibly have. Isn't that what we all want for all of our kids?
    This is one of the first videos in the series, but I'm bringing it back for those who missed it. It's my message to parents to just love their kids, just the way they are.
                                                                                                             With love, Cindy

15-Be Prepared

    Any good Boy Scout has learned that motto well. "Be prepared"! In case they get lost in the woods they should know how put up a tent, find food and start a fire. Well when you have a kid with Autism, they like to "elope" and they have a fascination with water,and I have learned to be prepared! Robbie wore an ID bracelet and he learned how to swim at an early age. (I talked about eloping in episode 9, when I took Robbie for a walk.)

    I was moved by a story in the news about Avonte Oquendo, a 14 year old boy in New York who had Autism, who ran out of his school and was missing for 4 months. They recently found his body 11 miles away in the river. If you're not familiar with the story, here it is.

http://nypost.com/2014/01/18/avonte-may-have-been-running-from-dog-drowned-police-theory/

    This was probably our number one fear throughout Robbie's life. One of the first times he ever ran away was during the fireworks on July 4th when he was 3 years old. I talk about all of this in this video.

                                                           Episode 22 "Be Prepared"

     Since shooting this video, I have read that they are trying to write an "Avonte's Law" and get funding for tracking devices to find "runners". Let me stress that I feel strongly this should be voluntary, and it should be a parent's choice to use a tracking device for their child. We don't need Big Brother to begin tracking everyone ;-) I know I would want one for Robbie, but it should not ever become a mandatory law.

http://newyork.cbslocal.com/2014/01/29/justice-department-to-fund-avontes-law-proposal-to-offer-tracking-devices-for-autistic-kids/


     Avonte's Law, from what I understand, would be that the government will fund the tracking device, rather than parents have to pay for it themselves. Here is an article that talks a little more about the device.

http://nycitylens.com/2014/02/parents-of-autistic-kids-look-to-tracking-devices-for-help/

 

     In case you missed Episode 9, where I talked about "eloping", here it is.

11-Snow Day

January 1, 2014

 

Happy 2014!

 

This was New Year's Day, and we were about to get a snow storm in New Jersey. Every time it's going to snow, everyone panics and runs to the store for bread and milk! It's kind of annoying because I don't panic, but I really did need bread and I hate when I go and the parking lot is full, and there's no bread left! So I am laughing in the video, but truly it's Jersey sarcasm. ;-)

 

When we get in the car, I do a parody of my favorite YouTube video of "Bread and Milk". If you're from the North East you'll find it hilarious. If you haven't seen it before, here it is.

 

 

 

 

When we were in the store, I decided it was time for Robbie to get a haircut. I cut it myself. I will explain why in the video. My daughter Patti (the one who I talk about who is now a Special Ed teacher) thinks I do a lousy job, LOL, so sometimes she does it.

 

 

 

 

I love how much my kids love each other.

 

So here's the video of the day!

 

9-Merry Christmas

December 24-25 2013

Christmas Eve

 

         Christmas Eve was a good day. He had spent the day Monday at his day program and was very happy that his life was getting back to normal. I picked him up and took him out and he was all smiles. We listened to Christmas music in the car and did a virtual Christmas Card for our friends on Facebook who were supporting us and praying for us during the month of December. Then we went to the children's service at church, because that's the one where you can be noisy!
         Before the service I took Robbie to the bathroom, and realized that's something people never think about.. I have to take him into the men's room when we are out in public, if they don't have a unisex handicapped bathroom. They make changing tables in bathrooms for moms with babies, but they don't make bathrooms for moms with grown up sons!

 

 

Christmas Day

 

 

 

 

 

    On Christmas day I had to wrap gifts in the morning because I had no time to do it during the week. (my youngest is a teenager and doesn't get up early anymore) I went to pick Robbie up and the woman he doesn't like was working. Oh no. He was grumpy. Luckily we went to Grandma's place and his sister Denise was there and he got in a good mood pretty quickly. You'll see how much he enjoys opening presents.....not! It's a chore for him, but he tolerates it. And then...well, you'll see. He cracks us up.

 

 



8-Perspective

Monday December 23, 2013

   Today I'm going to take you to work with me. I work as a Decorating, Staging and Color Consultant at a store that sells Benjamin Moore Paint. I am The Paint Diva! To many people this is a very stressful thing, picking out paint colors. But to me it's easy. Compared to what I used to do, this is a nice, easy job.
    In my life, after dealing with everything with Robbie, most things are pretty easy. In this episode, I talk about putting things into perspective, and maybe some of the things we think are just awful, a huge problem, or an emergency, are maybe not always as bad as we make them out to be. For me, having to spend time in the hospital because Robbie had a seizure is an "emergency" in my book. Decorating people's houses is fun.

                                                                

 

7-Comfort Zone

Monday December 23, 2013

                                                     Episode 10-"Comfort Zone"

      This episode shows the beginning and the end of my day. I went to work and started out showing you how I usually start my day. I usually read my bible and pray in the car listening to worship music. It's my comfort zone, where I get my peace. Later that afternoon when I stayed with Robbie one of the staff said she wasn't even sure what day it was because she was out of her comfort zone. We all were. Their whole job has changed and they have to relearn everything. For those who chose to stay and work it out and work with Robbie, I commend them. It's stressful for them, but they are doing a great job.

 

      I was stressed out too, and at the end of the day, I vented to the camera. Sometimes you just have to let it out.  Sometimes Christians try to make their lives appear perfect, like they have no problems. Well, I'm human and I have real emotions just like anyone else. Sometimes I cry, sometimes I get aggravated, but I don't stay there. I'll always end up "letting go, and letting God" by the end of the day.

 

 

 

 

5-The Breaking Point

Saturday December 21, 2013.
                   This was a long day. I had to break it up into 3 videos that day. Episode 6,7,8

                                                         

 Episode 6-"The Breaking Point"

        I left the group home that morning after sleeping over, and went to work. Since he had such a great day on Friday, I thought he'd be OK while I left for 4 hours. But by 1:00 I got a phone call  to come back because Robbie was agitated.

     His mood was terrible and I needed to cheer him up, so we went to visit my daughter Denise at her apartment.. Robbie loves his sisters, and the feeling is mutual, as you'll be able to see when we arrive she jumps up and down at the door, LOL.

 

   While we were inside I realized that I would have to put some of my life on hold for a while so I could tend to Robbie during this whole transition. I sing in a worship band at my church, I sing the female leads, and my friend Matt sings all the male leads and plays the guitar.

 This was an important weekend, the one before Christmas, but I made the decision to bow out on Sunday, in case I got called to Robbie's house for an emergency. I didn't want to call at the last minute on Sunday morning, so I called Matt to tell him I won't make it on Sunday so he could get another singer to fill in for me. He prayed for me over the phone.....and then I lost it.
    After a month of running back and forth, sleeping on the couch, meeting the police at the house, and worrying about him having a seizure due to the stress....the dam finally burst.

                                                                  "The Breaking Point"

Episode 7-"Me and My Shadow" 

 

 

   When we were at Denise's apartment, you may have noticed I got nervous about him laying down under the blanket. That's what he does when he starts making himself sick. If it continues, he'll start vomiting, and then have a seizure. So I needed to perk him up. I took Robbie to the bagel store and while they made my Panini, we sat and had a soda. A little sugar and caffeine usually perks him up. Since his fine motor skills aren't all that great, he has invented his own way of opening up a bottle. :-)

     I was going to be sleeping over at the group home again, and I don't take showers there, so we stopped home so I could shower. I wanted him to stay happy, so I had my husband take him for a ride in the car playing music to keep him busy. So for those of you who have been wondering where Robbie's Dad is this whole time....here's your answer!

 

 

                                                                      "Me and My Shadow"

 

 

 

Episode 8- "It's 5 O'clock Somewhere"

 

After visiting Denise, we went to Stop 'N Shop and and cruised around being silly singing in the car. It was a long day and Mommy was losing it by the end of the day! LOL

 

4- "The Sixth Sense"

   Saturday, December 21, 2013. Episode 5-"The Sixth Sense"

 

   Robbie moved in on Monday and I have slept on the couch all week. I've spent a lot of time at the group home, and have watched the staff in action. They are not happy about the changes that came about when Robbie moved in. Some are adapting to the change, and some are not. One particular woman just has a lousy attitude. I don't think it's just this week she's like this, I think she's just a miserable person in general. You know, one of those people who thinks the whole world should do things her way, or she's out.
    I got up in the morning and tried going to work for a couple hours, but got called to come back to the group home by 1:00 because she was having a problem with him. I was not surprised. I knew Robbie didn't like her. To be honest, I never really noticed how affected Robbie was by other people until I shot these videos. I never saw him interact with people other than family members in this type of setting before. So this was eye opening for me to see how sensitive he is.
     Here is my narrative.
     And by the way....for those who get nervous about me filming in my car, this episode has bloopers at the end that explain to you WHY I need to film in my car! LOL

 

 

 

 

3 - Losing Sleep

Friday, December 20, 2013 Episodes 3-"Losing Sleep" and 4-"Happy Accident"

      After getting called twice because Robbie was throwing tantrums and attacking the staff, I have been spending the night on the couch at Robbie's new group home for a week.

  In episode 3, I wake up in the morning and get Robbie up and ready to go to his day program.

    You'll  see how they dispense meds, which is pretty cool. They come in individual blister packets with the date on each pill, so there never is confusion as to whether or not he got his meds. I wish I knew this existed when he lived at home! So many days I sent him off to school and said "Oh no! Did I give him his meds?" Then I'd have to count the pills in the bottle and try to guess if I gave it to him or not. All group homes use this system. I don't know if it's available to the public, but it can't hurt to ask.

               (Click the link)

                                              

Episode 3- "Losing Sleep"

Episode 4 is Friday night.



Robbie trying out recliners in Macy's

     Here Robbie comes home from day program with his buddy who he loves. You'll hear him say "We had an accident on the way home" and I shut off the camera because I thought he meant a car accident! (It's the Friday before Christmas so traffic is crazy) But he meant that Robbie had peed his pants. He wears a diaper but he went so much that it leaked. Robbie went swimming that day, and he drinks a lot of water in the pool. (I know, gross, but I can't catch him doing it to make him stop, He just loves the water too much!) So he always has a few accidents after he swims.
    In this episode I also go buy a recliner for his new home for his birthday. In his old group home, his roommate had an old recliner and Robbie loved to sit in it. So I wanted him to have something of his own in the new house. But as you'll see in the video, I was refused insurance because it was going into a group home! So I told them what they could do with their chair ;-) ;-) and went somewhere else.

                                                             Episode 4: Happy Accident
                                                                 

 

 

If you want to see the new recliner when it arrives, you'll just have to wait

until Robbie's Birthday!

(episode 14)

2- Calling 9-1-1

Episode 2-"911"

   Well, after spending a couple nights at Robbie's new group home, I thought it would be OK to leave him for a night. I thought wrong! I left at 8:00 pm, and at 10:30 pm I got a phone call from the woman working with him. She was frantic. Robbie went into the kitchen and threw the garbage and everything off the table and was very upset.
  She didn't know what to do, so she called the police!
  Here is the story of what happened.

 

 

 

Since a lot of parents ask for my help and advice, here is a message I did for parents of kids and adults with Autism. My message is simple. "Just love them the way they are".

Love them Unconditionally.

 

 

Have a great day, and Robbie says "Hello"! :D