Wednesday, December 19, 2012
Many parents with typical kids take small things for granted every day. I used to be one of those parents too until Sam came along. I remember when my thinking changed. Sam was about 2 years old and we had started our search for schools for him. He was in Early Intervention and would age out at the age of 3. We knew we didn’t think our towns program was a good fit for him so we started our search across NJ to find a school for Sam. We were at a school that we really liked and they had brought us into their gym. There was a boy on a swing – he was 14 years old. They said his favorite thing to do was to swing on the swing. But he couldn’t do it himself. He needed to be pushed. He couldn’t understand how to make it swing by himself. That was when it hit me in the face, and it stung! All I kept thinking was here I am looking at this teenage boy and there was pure joy on his face when he was pushed on the swing. How they tried getting him to move his legs and such to do it himself but he wouldn’t, he couldn't! He just sat there upset. I felt terrible. Most typical parents put their kids on a swing and it’s no issue – they can just do it or they learn quickly to do it……But not parents like us. Most things are much harder for our kids.
Ever since that day I realized that every single step Sam takes is HUGE for him & us. I celebrate them all! Well I am going to share with you a step he took today! When we are going to be leaving the house to go somewhere I have a routine with Sam. I usually tell him about 15 minutes in advance that we are going in the car soon to go to wherever. If I have a picture of it I will show him where we are going. I then take him to the bathroom, get his socks out of his drawer, then I go to the closet and take out his shoes. I will tell him to sit on the couch and I put on his stuff. Well today I told him we were leaving soon to go to therapy and he ran out of the room. I heard some banging and saw him go running past the kitchen doorway. He plopped himself down on the couch. I walked over and saw what he did. He ran and got his own socks out the drawer and his sneakers from the closet and was trying to put them on himself. I never told him to go get them he did that all on his own. I was so proud of him!!!
I also wanted to say this – I know it wasn’t meant in a bad way but felt the need to address it so here I go. The other day I posted about a great moment when Sam and I had our first conversation. I had gotten several private messages from people saying they were sorry. Sorry Sam is like that and I have to deal with that. Please DON’T be sorry!! I am not sorry!! Autism doesn’t define Sam. I thank God every day for him – Autism or not he is a loving, caring, wonderful little boy and has much to offer the world. He has made me and so many others better people. He has taught me a new way of seeing the world. I appreciate so many more things now than I used to…and I take time to stop and smell the roses! I love Sam the way he IS!!
Sunday, October 7, 2012
Sam understands many things but when the weather changes he gets thrown off.
When Sam goes to bed or just hanging at home he likes to wear plain white T-shirts and sweatpants. When we are going out or if he has school then he puts on real clothes. This morning Sam woke up on the early side (as usual) about 5 am. It was a chilly morning here. Sam was cold and shivering so I went into his closet and pulled him out a sweatshirt to throw on. He was sitting on the couch watching Cars and I told him I am putting on his sweatshirt so he will be warm. Well as soon as I put it on he thought we were going somewhere. He immediately pulled his sweats off – ran and got a pair of jean, socks & his sneakers. I kept telling him we weren’t going anywhere and he didn’t have school but he didn’t understand it. There he was at 5:15am all ready to go waiting by the front door. I told him we would take Hagrid outside, so we went out into the yard for a few minutes. When we came back in he still wanted to go out. If my hubby was home I would have taken him for a ride but my hubby is away and I wouldn’t leave the house with my other boys home. Sam looked so uncomfortable all morning hanging out with his jeans and sneakers on while the rest of us were all hanging in our sweats.
I went through Sam’s closet and pulled out all his plain sweatshirts and long sleeve T-shirts. I moved them into his PJ drawer with his sweats and white T-shirts. I am hoping I can get him to understand that these shirts aren’t going out shirts lol they are hanging home shirts.
Friday, September 28, 2012
So yesterday I posted a picture on Facebook that I thought was funny. I asked Sam what he wanted for breakfast and he went to the cabinet and pulled out 10 boxes of cereal, some crackers and some other stuff. Now many of you know the struggle it has been for us to get Sam to eat anything at all but for those of you who don’t here is some of the story.
|Sam picking out his breakfast...He wound up eating none of it.|
He ate some Lays Chips instead.
Forgive me if this jumps all over the place – I have been sick since last Friday and my head aint working right.
Also I know many people have their kids on the GF/CF diets, which I think is great if you feel that works for your child. Every child is different and Sam has always been very picky and we never wanted to limited his food at this time – if he ate anything we put in front of him then I would have considered those diets but for now not an option for us.
Sam was ALWAYS picky. It started with babyfood. That should have been my tip off about what the next few years would bring us. He hated all baby food except for Mixed Fruit baby food. That was the ONLY kind he would eat. That and milk. No water, no juice, no finger foods. When we would go out I would carry jars of Mixed Baby fruit with me. When we went to Disney in 09 (Sam was 3 at the time) I had a suitcase filled with Mixed fruit baby food jars. His Milk – Had to be in a certain brand of bottle, certain color and heated for 35 seconds in our microwave. Different bottle, color, off a few seconds on the microwave and you better watch out cause that bottle was getting thrown at your face. The doctor said he was being stubborn and he will take it anyway once he is thirsty enough. Tried that and it didn’t work – days of Sam having super milk meltdowns and he would NEVER drink it any other way. He would go days without drinking anything so I would go back to giving it to him his way. It worked for a while and I didn’t care – at least he was getting vitamins. I used to put all of his supplements and vitamins in his milk, a little each bottle….. When he was 5 he stopped drinking milk. He won’t even go near it now. Now all he will drink is Ice cold water. I was glad he started finally drinking water but hate it that he no longer drinks his milk. I can’t give him his supplements anymore because he won’t take them with water. Back when he only drank milk we would go somewhere for the day and he wouldn’t drink ALL DAY – we would try to heat up milk for him while out but he wouldn’t have it. It was scary at times when it was hot out. So now he will drink water like a fish but that’s it. No juice either.
Sam has been in feeding therapy since he was 18 months old. He was first tested to make sure it wasn’t a swallowing issue that prevented him from eating and it wasn’t. With Sam it’s all Sensory and behavior. We used to take him twice a week for an hour each session but when he started school we dropped it to once a week. At one time his feeding therapist told us there was nothing else she could do for him. That was right before we got Hagrid.
Sam lived on Lays Potato Chips and Cheez its for the first few years of his life. Im not kidding, those of you who are friends of mine now I always carry my supply on me wherever we go….Still do. Sam was the only kid in his class who at lunch time only had chips and cheez its for lunch. Last year he started eating plain bagels. So now his lunch everyday is a plain bagel, chips, cheez its and a bottle of water.
There were a handful of other things Sam would sometimes eat. Cookie Crisp, Marshmallows, Ritz Crackers to name a few but no real food.
When we first started feeding therapy I was asked to pick a “target food” we wanted him to eat. We picked chicken nuggets because it was something we knew we could get just abo9ut anywhere. So before every session I would stop at McDonalds and pick up some nuggets and he would never go near them. He has such an aversion to food he wouldn’t ever even try anything. Many times he wouldn’t even touch it. Just seeing it or smelling food would gross him out. Many times he wouldn’t even sit with us at the dinner table.
Fast forward to A few weeks after we had brought Hagrid home Sam decided to eat some nuggets…and boy did he eat! He ate about 20 of them….he ate his and his brothers lol. Now we go in spurts with them some days he will eat 15 other days only 2. But this was way huge for us and him!
I am not sure why but since we have gotten Hagrid Sam has opened up so much more to food. Chicken Nuggets is still his only “real food” he will eat….and he will only eat them in the car while we are driving but hey that’s OK I will take that. But he has started eating so much more different foods that before I was scared that he would lose weight and wind up in the hospital but now I have hope that he will be an eater just yet.
He has been eating like a champ lately, and he ALWAYS sits with us at the dinner table now – and even eats his own food while we eat.
Some of his favorites now are – Veggie Sticks, Frosted Flakes – Dry of course all of his cereal he eats dry, cookie Crisp, Fruit Loops, Apple Jacks, Lucky Charms, Pretzels (both hard and soft), Vanilla Ice Cream (soft only) , Fruit snacks, Nilla Wafers, French Fries, Bread, Hash browns, Apples, crackers, oreos (well only the cream – its actually really gross when he eats them), ginger snap cookies, Doritos, popcorn, powdered donuts or munchkins, glazed munchkins…..and some more stuff.
Most of this stuff he just started eating within the past few months (since Hagrid came along) and he won’t eat them all of the time. He goes in spurts. Lays and Cheez its are still his go to food(thank god for Costco where I but bags of 50 at a time) but its nice to see him opening up. I hope by next time this year he is downing some steaks and yummy stuff! I also want to start adding back his supplements somehow. Havent figured that one out yet though.
Thursday, September 20, 2012
I never thought I would ever have to write this letter to a teacher but thanks to good ole Hagrid I found myself writing it last night. “Dear Sam’s Teacher – I am very sorry but our Dog ate Sam’s homework and ate part of his homework binder”.
Seriously – I can’t make this stuff up. My 8 year old son, Josh was doing his homework after school. I told him it was time to leave to go to Sam’s Speech Therapy. Hagrid can’t go with us for Speech because Sam’s therapist is allergic to dogs. So Josh asked me if he should leave his homework on the table. I told him sure. He asked what would happen if Hagrid ate his homework. I told him not to worry about that. I said Hagrid would never eat your homework and if he did the teacher wouldn’t believe it. So he left his work on the table and we were on our way.
Hagrid really isn’t ever left home alone. He is either out with us or we are home with him. But last night was one of the few nights he was home for about an hour or so alone.
Hagrid is a GREAT doggie but hey with his vest off and nobody home he can cause a little chaos in the house. We walked in the door and he was lying in his dog bed. I walked into the kitchen and saw little black pieces on the floor. I thought to myself – Oh no what is that? I quickly realized that Hagrid went into the little cabinet where I keep Sam’s homework journal and his work. The cabinet door was open and there were a few pieces of torn paper on the ground which was once Sam’s work. I also discovered that Hagrid ate some of Sam’s homework journal!!
Josh of course saw this and said “I told you Hagrid would eat our homework!”
|Sam's Homework journal|
Tuesday, September 11, 2012
If you want to skip my post and check us out on the news then Click Here.
When Guiding Eyes Forthe blind asked me if I would let the News come to our house to interview us about Sam and Hagrid I didn’t have to think to long about it. Of course I would! How could I say no to an organization that has changed our lives so much? I couldn’t and I wouldn’t. I have made it a mission of mine to spread the word about Guiding Eyes – Heeling Autism and what a wonderful program they have. I also like to raise awareness about Autism and Autism Service Dogs.
The morning came and I was so nervous. I was trying to keep my house clean and more importantly have Sam clean and keep his clothes on. He has this nack for knowing when someone will be at the house about 5 minutes before they arrive. That’s usually when he will throw his food all over then take his clothes off and want to take a bath. Well this morning Sam was being awesome! They were supposed to be at the house at 10 but they were running late. I knew the later it got the more annoyed Sam would become. He didn’t understand that anyone was coming over but he did understand that things were different. I am sure he could feel my stress plus I was following him all morning with the broom.
Caroline and Michelle from Guiding Eyes arrived to the house first. Rob and I saw Michelle carrying a box of Munchkins from Dunkin Donuts and PANIC set in. Sam LOVES Munchkins. He will only eat the powdered ones but he must go through the entire box. He eats one and the next he will crumble into sand and throw it around, eat another, crumble another…etc…In other words he make a freaking mess!!! I ran to the door before Sam could see them. I was actually very rude now that I think about it. I pretty much opened the door and ripped them out of Michelle’s hand and told her I am hiding these now!! I’m not even sure if she brought them for Sam or for herself. Well Sam didn’t see the box but he smelled them. He was searching the house for them. I finally gave in and gave him a few and sure enough as he was eating them the News showed up.
It was Dr. Jay Adlersberg from WABC Eyewitness News. I was nervous because I wasn’t sure what they were expecting to see. Sam won’t sit with us and chat or sit with us while we chat. Sam doesn’t sit still much. Plus he gets very on edge whenever there are new people in the house. Dr. Jay had asked if Rob and I could sit on the couch for the interview but we figured it would be best if we were interviewed one at a time so the other could keep an eye on Sam. Sam isn’t the type of kid that can be left along – ever!! He needs to be watched pretty much at all times. He likes to put stuff in his mouth, he will try to touch electrical outlets and he will get naked!! We decided that I would be interviewed first and Sam was standing next to be – They asked me to play with Sam on the couch for a minute while they filmed. Talk about unnatural – I asked Sam for a kiss, he gave me one, and then started to pull down his pants lol. Rob took him in the other room. They interviewed me, then Rob. I took Sam outside while they were with Rob. Next they interviewed Caroline. Then they took Hagrid and Caroline outside. After Dr. Jay sat with Hagrid filming his intro….Then finally the time I was waiting for – To tether Sam and Hagrid and go for a walk!! I told Dr. Jay in the beginning if we went outside and walked while doing the interview then all 3 of us would be in it at once. Sam and Hagrid are flawless outside as a team. But he wanted to do the interviews inside. I was happy though and so was Sam to get out for a walk. He was getting a little upset because they kept having us walk just a few feet then turn around and walk more. Sam doesn’t like constantly being turned – he likes to know where he is going….which usually when we walk we go right down the block. We then sat in the driveway and Sam was getting hungry – we told him we would take him for some McDonalds as soon as we were done….We wrapped it up and Sam ate 20 chicken nuggets and some ice cream!!
Here is the link to the News clip - How pets help kids with Autism
Remember the camera adds on 10 lbs.…..lol…..I saw this and realized I need to start my New Year’s diet.. A little late or a little early however you want to look at it.
Anyway it was about Pets helping kids with Autism and I kept telling him Hagrid isnt a "Pet" Dog he is our Service Dog.....there is a difference. But all in all I think it came out good and hopefully raise more awareness for Autism Service Dogs and Guiding Eyes For the Blind - Heeling Autism.
Anyway this wasn’t the first time we had the cameras in our face. Back in January we were approached by the BBC and were asked if they could film us for an Autism documentary they were doing. We said sure! Rob didn’t want any part of it but I felt like we had too. If we could help one person who saw it then it would be worth it. (Kind of the way I feel when people tell me they are now on the list for an Autism Service Dog after reading my posts J )
They came to our house for 2 days. This was before we had Hagrid and Sam was at his worst! It was 2 looonnnggg days. They watched us eat, hang out; play, and they interviewed us. That wasn’t the end though. They filmed Sam at school several times. They came with us to Sam’s Speech and Feeding Therapy for 2 hours and filmed. They also spent a day with us at the Local Aquarium…Yes filming the entire time. It was stressful but I was glad I did it. They went back to London to edit it. We had gotten the call several weeks later that they took a different direction and we weren’t going to be in it!!! UGH!! Imagine that!!! All that filming for nothing!! They sent me a copy of the DVD that they made and I quickly realized the direction they went in…..Older Verbal kids with Autism. They clearly didn’t want to show all the faces of Autism, only the ones that could talk to them.
Monday, September 3, 2012
Well I have been saying for months that I wanted to start a blog and today was a good day to start.
This is my first blog post and its kind of long - sorry!! I just felt that in order for you to understand where I am coming from in my future posts you need to know these things about us.
My name is Jennifer and I am a Mom to 5 boys. My older 3 are my Stepsons that I have always treated like my own. I came into their lives at an early age. (I could probably write another blog about step parenting!) My Hubby and I have 2 kids together. My youngest son, Sam has Autism and Apraxia. Sam is 5 ½ now and he is nonverbal and is a very picky eater. He understands many things you tell him but he has a hard time communicating his needs at times. He also has no sense of Danger. He was diagnosed at 18 months but I knew he had it much earlier – around 6 months. I kept telling the Doctors I thought something was “off’ and kept getting told he is just delayed because he has 4 older brothers to do stuff for him. Finally after he turned a year old I set up an appointment with a pediatric Neurologist – the wait list was 3 months!! Got to Love that! Anyway I will never forget that day… “I am sorry but your son has Autism” said the doctor……I replied “Yeah Don’t be sorry but thanks for the diagnoses finally so I can start getting him what he needs – Therapy!!” After that day my husband, Rob and I never looked back. Sam was immediately enrolled in our states Early Intervention Program. He received OT, ABA, Speech and also developmental play time with other therapists. He also started feeding therapy at this age too. He stayed in EI until the age of 3. Our town tried to keep him in the town program but we had started researching schools before he was 2 and we knew the town program wasn’t right for him. He started going to a school for kids ages 3-21 with Autism. We love the school he is in but more importantly so does he!! He has just moved out of their preschool program and into their Kindergarten program.
As Sam got older his behaviors changed. I had heard about a place that helps kids with Autism with Service Dogs. My sons ABA therapist, Angela, had told me about it. I immediately looked up the info and was on the phone with Caroline from Guiding Eyes for the Blind – Heeling Autism Program. She sent me out the application to fill out. At the time we filled it out our only need was to keep Sam safe in public. Sam did two things while we were out at this age (he was about 2). He sometimes refused to walk, throwing himself on the ground forcing us to carry him. I remember some days just crying as I had to carry him to pick up my other boys from school. I would have to park my car a few blocks from the school and I would try to get Sam to walk. He would then throw himself down and I would carry him. He would be so heavy and my arms would start to burn. We wound up getting a Pushchair for him; it was a special needs stroller. It looked like a wheelchair but had stroller wheels. He was too tall and heavy for a regular stroller. We hated using it though because when Sam went in it he would totally shut himself off and just zone out. He wouldn’t interact with anyone or anything. So we only used that when we had to for his safety or for times we just knew he wouldn’t walk…The other side to him was that he hated holding our hands and would often try to run off the times he would walk. This was always very scary for us. He refused to wear ID so if he ever did get away he wouldn’t even be able to tell anyone who he is or that he has Autism. We applied for the Service Dog and Caroline called us to set up the home interview. I will NEVER forget that day. Caroline and Maureen came down to our house with a Heeling Autism Dog named Randy. We owned dogs at the time and Sam never cared for them so I was very nervous how this was going to go. I envisioned Sam totally freaking out on this poor dog and them being like “Yeah Right – you are not getting a dog from us!” They brought Randy into the house and he was lying around and Sam sat on the couch doing what he still does – watching Cars. Caroline then said let’s try going for a walk with Sam and Randy. I laughed and looked at my husband and said “Well this should be interesting. There is NO WAY Sam is going to walk with this dog”. Boy was I wrong!! Rob and I walked behind Sam, Randy, Caroline and Maureen. I couldn’t believe what I was seeing. Sam WAS walking and holding onto Randy’s handle. There was even one spot where a branch was on the ground and Randy moved around the branch and Sam ran to keep up with Randy. I was so happy I cried. We begged Caroline to keep Randy right there and then lol we even offered her money ;-) but she had told us Randy was already spoken for and he was already going to help a family that needed him. They had told us the wait would be 2 years for a dog. Let me tell you that was a long 2 years but totally worth the wait! I had gotten the call in January of this year that they were training Hagrid for Sam!! I couldn’t believe it. I was crying again – for the record I usually never cry! The next step was going up to their Yorktown Heights facility for a week in April for Team Training. We were finally getting our dog. They emailed me a picture of him and I loved him so much before I ever even met him.
|The picture Caroline emailed me of Hagrid. It was love at first site!|
By this time Sam’s behaviors out in public had changed drastically and I had become a prisoner in our home. It was very very rough to take Sam anywhere and often I would just stay home with him. His meltdowns out were becoming very severe and I had no control. It was terrible to go somewhere knowing this would happen. I hated seeing him get so upset and not be able to help him…This was very hard on my family as we were always the get up and go type before Sam’s behaviors became so severe.
My week in April arrived and for the first time ever I was leaving my family. I was so nervous but knew this was such an important thing I was about to do. I got to Guiding Eyes and was greeted my Maureen – she made me feel at home and we both chuckled that I came walking in with my Keurig Machine…Hey I can’t live without my coffee and I wasn’t sure what they would have at their facility. I unpacked my stuff in my room. They have separate rooms for everyone with a private bath, small fridge & cable TV. It was much nicer than I expected. I met up with the other Autism parents (there were 6 of us total) and we started our training. We trained for the week with our dogs, learning the commands and going out into the public. We went to parks, malls and stores to train. Our spouses or someone we wanted to come also came for a day of training. I forgot to mention the best part – They had a chef!! Yep for that entire week I didn’t have to cook a thing!! That was nice! Not only were we there but they also have an entire program for visually impaired men and women. That program is different than the Heeling Autism program. They stay for an entire month to train. Really it was an amazing week. On that Friday we had our final meeting and we were on our way home with our new dogs. They told us not to rush the bond; it could take weeks or months. I was so nervous on the way home wondering how would Sam like Hagrid and how would I keep Hagrid from bonding with my other boys instead. Well Sam and Hagrid bonded almost instantly. Sam who never once would touch our other dogs in the past was sitting next to Hagrid petting him just 1 day after bringing him home. It’s like they knew they were meant for each other. Hagrid has bonded with all of us in different ways.
|Sam and Hagrid bonding already after only a day of being together.|
Hagrid has been a true MIRACLE for us!! Sam and Hagrid are a perfect fit and now public outings are awesome and mostly stress free! Sam is like a different kid now. Since Hagrid is a Service Dog he can go anywhere with us. He is allowed out in public and into stores. Hagrid wears a vest that has a handle on it. Sam holds onto the handle but he is also tethered to Hagrid. Sam wears a belt around his waist and it is connected to Hagrid vest. If Sam lets go of Hagrid and tried to run off Hagrid will “Plant” himself on the ground so Sam can’t go anywhere. I then tell Sam he has to come hold onto his dog. Most of the time he will carry on holding Hagrid but sometimes he still wants to get away, like if he sees a toy he wants. Its then up to me if I want to bring Hagrid and Sam over to the toy or do I take Sam by the hand and make him hold onto the handle as we walk away. Once we are away from the toy he is fine. Sam now has very few meltdowns. He used to have them ALL of the time both in and out of the home. Hagrid calms Sam. Hagrid has had a positive impact on this entire family. He has given me back my life! One of the first times we were out at a restaurant with Hagrid, we were all enjoying our meal (which we weren’t used too) my 7 year old Josh said “It’s amazing how one life can change 7” and he is right!
One of our many special walks together.
Now don't get me wrong - Sam still has Autism and doesn't act like a typical child and we don't expect him to. When we go out we don't look typical at all - we do have a 70 pound yellow lab that is connected to my son. That would be the first tip off that something is up with us. I get a lot of questions and stares and that's fine with us. Sam is happier now. We are happier now. Outings are almost stress free. When he does have his moments it is nothing like it used to be. To remove the fear alone of Sam wandering off is great enough but we have been blessed with so much more. We knew Hagrid was going to be a great thing for us but we didn't realize just how great it was going to be.
As I mentioned earlier Sam started Feeding Therapy at 18 months old. For years he lived on Cheez Its, Lays Potato Chips and Milk. Since we have gotten Hagrid, Sam has increased what he eats by so many things! I am not sure what the connection is between Hagrid and Sam eating – but hey I don’t really care – lol – whatever it is – its working! Sam’s feeding therapist had asked us to pick a target food for Sam to eat back when we started at 18 months. It was Chicken Nuggets. We picked those because we figured we could get them anywhere we go. So every session I would pick up nuggets and he wouldn’t even touch them. We tried for years to get him to eat them and nothing. Last year he ate them for 2 days then wouldn’t go near them!! After a few weeks of having Hagrid home Sam was actually requesting Chicken Nuggets with his PECS board. (PECS is how Sam communicates what he wants since he can’t talk. It’s great for certain things – like food that we know he likes. We have pictures of all of the foods he eats and what we wanted him to eat – so he will point to “I want – Chicken Nuggets”) Now the catch is he will only eat them in the car and from McDonald's or a place like that but it’s a GREAT START!! When he is in the mood he will eat 15 of them.
I started my Facebook page “Sam’s Voice – Helping to put the pieces together – Autism Service Dog” originally to fund raise for Guiding Eyes for the Blind – Heeling Autism. It costs them $45,000 – 50,000 for each dog and they GIVE the dogs to families. That just amazes me. They really have a great program – both for the Blind and children with Autism. With the help of my Facebook friends and family we raised over $3,000 for them. My plans are to have Sam’s Voice become a nonprofit organization so I can continue to raise money for Heeling Autism doing various fundraisers. They have given me such a gift, a Miracle……
Anyway that is part of my story – the quick version – lol – the rest you will all have to wait for my book!