Preparing for Halloween Costumes!

Halloween is one of the most eagerly anticipated events for children. Unfortunately, many children with autism aren’t able to participate due to their level of stress and anxiety caused by being in unfamiliar situations. But with proper preparation, you can help your child participate in this timeless tradition by using simple strategies and techniques like priming, pairing and reinforcement.

Priming is a simple evidence based intervention method for individuals with autism.  It works by preparing the student/child for unfamiliar or novel situations by exposing them to new activities or events prior to the actual event, thereby creating predictability. In a nutshell, priming is used to “preview” the event or activity before the actual activity or event. Priming sessions are short and concise and typically involve using the actual materials that will be used during the event or activity.

This method, combined reinforcement strategies can help prepare your child for a successful Treat-or-treat event. The first step in the process is to familiarize the child with the costume by creating tolerance.

First, start by familiarizing your student/child with the costume. Select a costume as early as possible. Many children with ASD may need extra time to become accustomed to wearing their costume for several hours so be prepared to teach tolerance to the costume by starting the preparation several weeks prior to the event.

 

Here are some steps that you can follow to teach tolerance:

1. Get the child accustomed to the look and feel of the costume. Start by letting the child play with the costume. Use that time to pair. Once the child feels comfortable, have him/her wear the costume. Some kids, especially those with sensory needs, may need to start by wearing the costume over comfortable clothing. Use a schedule of reinforcement – i.e. token economy – to keep the child motivated and engaged throughout this process.

2. Once the child is able to tolerate wearing the costume, systematically increase their level of tolerance. Start by having the child wear the costume for a short period of time. Gradually increase the length of time until the child feels comfortable for longer durations. Don’t forget to provide reinforcement.
3. Take baseline data. Use a stop watch (or clock) to keep track of the length of time your child will tolerate the costume 3 to 5 times over the course of two days. Divide the total number of minutes that your child is able to keep the costume on (without any negative behaviors) by the number of times you put on the costume to calculate an average.

4. If your child is able to wear the costume for 10 minutes without any negative behavior, increase the length of time by another 5 to 10 minutes. Set the timer and provide the reinforcement once the child achieves that goal.

5. To build tolerance, start by selecting an increment of time that is appropriate for the child. In the beginning, the child may only be able to tolerate the costume for a few minutes, but that’s still a good starting point. Establish your goals according to the child’s ability. The goal is to gradually increase the tolerance without any negative behavior so don’t try to hurry through this process.
Don’t forget to systematically provide reinforcement to keep the child’s motivation high.

Preparing for Halloween Costumes!

Meet Samuel

Hello all Amanda again introducing you to Samuel my 5 year old!

Samuel was born in August 2011 exactly 4 years, 7 months, 1 day and 15 hours after his older brother.

Samuel was originally going to be named Wyatt Ray so some of my old facebook posts say that name instead of Samuel Ray. Daniel wanted to name his baby brother Fireman Sam after a cartoon he loved! We compromised and picked Samuel after the cartoon Daniel loved and an uncle!

My pregnancy with Samuel was pretty uneventful. I did have high blood pressure my first 6 months and by the last 3 months my blood pressure returned to normal range, and stayed that way (still has). My blood pressure had stayed high after my pregnancy with Daniel and then after my pregnancy with Sam was fine.

Samuel weighed 7lbs 8oz with a full head of dark hair! Daniel came up that night to meet house brother and it was the most precious thing I’ve ever witnessed! At the time I was pregnant with Samuel my twin sister Becky was pregnant with my second neice Aubree! My due date was August 17th and her c-section was scheduled for August 18th. We thought for sure we’d be up there at the same time with the newest members. But as luck would have it Samuel came early, which worked perfect since we had the same doctor.

Samuel never really seemed to meet developmental milestones at the appropriate age, some he would others not so much. He had 11 ear infections before his first birthday! Asked his doctor for a referral for tubes and he said he’d out grow them so I got a second opinion and that doctor gave me the referral. One month before Samuel had his first birthday he was having his first of many surgeries. He got tubes and I’ll tell you, you really don’t have time to even worry! I feel like I’d barely sat down in the waiting room and they were coming out to let me know he was done.

AEA was contacted by me to see if they could help with Samuel’s speech at that time he had enough sounds and gestures they couldn’t offer services, I was frustrated because he was going on a year and a half and still not saying many words if any. They also told me he had no stranger danger something most kids have outgrown about 9 months old he still wasn’t afraid of new people. He still isn’t to this day he’ll walk up and hug anyone given the chance! I talked to his doctor and he wasn’t concerned about Samuel’s speech. I continued working on it at home, reading to him, practicing colors, shapes, numbers etc.

By the time he was 3 he was talking but was extremely hard to understand. There were days and still are some where people will ask me what he said and apologize for not knowing what he said. I always tell them not to be sorry it takes time and that there were and occasionally still are days even being his mom and around him 365 days a year I can’t. Talk about feeling bad! Samuel started headstart that year. And would attend for two years. In that first year his teachers approached me about having a school eval for Speech. I think they were a little shocked at how excited I was they asked! I told them yes please do I’ve been wanting to do this for so long but was getting no where. They wanted this done because they were having trouble understanding him, peers were, and he was getting so frustrated. Samuel began speech services at school a few weeks later. Samuel continued with speech the two years he was in headstart. During this time the doctor he had retired and he got a new one. This doctor has been amazing! I asked him for a referral for speech when Samuel would be turning 4 and he gave me one. Samuel has been in speech almost two years now! And he’s so much more intelligible! Less and less I need to tell people what he says and he’s less frustrated. We learned from going to private speech that Samuel has 3 speech disorders. Childhood Apraxia of Speech, Phonological Processing Disorder, and Mixed Receptive-Expressive Language Disorder. In the past year and a half I’m just amazed at all the goals he’s met! And in kindergarten he continued speech at school as well.

I guess I’ve gotten a little ahead of myself. Samuel has had 7 surgeries total although I will not list them all. The longest and scariest for me and I think him too was his bilateral eye surgery at age 3. Samuel got glasses at 18 months old due to poor vision and his eyes crossing. His local eye doctor had me try putting drops in his right eye because it was his strong eye, these drops would blur his vision some and force him to use the left eye which was his weak eye. At this point his brain didn’t even recognize his left eye was there anymore and he was at risk of losing his vision completely in that eye. After several weeks of drops and no improvement we were sent to Iowa City to see a pediatric eye surgeon at UIHC strabismus clinic. Samuel had strabismus and amblyopia. A crossing of both eyes. Our doctor there had me try patching his right eye again in hopes we’d see improvement with the left. We went back every two weeks for a little over a month (quick thank you to my family who helped with these trips and hotel stays as going every two weeks is expensive) but again I was given the news that it hadn’t worked. Samuel now needed the bilateral eye surgery. The surgery would take an hour give or take not including pre-op and post-op. I was allowed to dress in scrubs and booties to take Samuel into surgery because he was so scared. Holding him while they put him under and seeing his body so limp made me cry. I cried the entire way to the waiting room. And I prayed, I prayed so hard that everything would go well and there’d be no complications. After what seemed like an eternity a nurse came and got me to tell me Sam was done, everything had gone well. He still needs his glasses but for now his eyes are staying straight, there’s a chance he could need the surgery again. Fingers crossed it doesn’t come to that.

Summer of 2016 we again traveled to Iowa City to the Center for Disabilities and Development (CDD) to have Samuel evaluated for Autism and to have his IQ tested. During this trip Samuel was diagnosed with a Cognitive Developmental Delay and his IQ tested on the higher end of impaired (7pts higher than having an intellectual disability). They said Samuel didn’t have autism and that he’s too social for that. I may not agree but there’s always second opinions.

After getting this information i went to AEA and Samuel’s past and future teachers. Samuel had his IEP adjusted so that it was no longer just speech it now included academics. It was decided he’d do better in the special education class as it’s less kids and he’s done beautifully! Still behind peers his age but doing great. Samuel will now move on to first grade.

Samuel enjoys people, he’s most defintly a people person. Loves hugging everyone and can make friends anywhere we go. Samuel enjoys drawing, building with Legos and blocks, doing school work on his iPad, and playing video games with his brother or me. He also enjoys the time we spend at OLC At Play helping me volunteer and asks every weekend if it’s our turn to go to the mall. He loves being with family!

I love Samuel and wouldn’t change him or his brother! I couldn’t ask for better, more caring children. My heart is full.

**Edit to add in 2015 Samuel was also diagnosed with Sensory processing disorder (SPD)**

 

Be blessed

Amanda

Meet Samuel

Meet Daniel

Hello everyone Amanda here! As promised I’m writing to tell you about my oldest son Daniel.

Daniel is my Kentucky baby. When I was 17 I moved to Kentucky with my aunt and stayed for two years. I got married (divorced a year later) and had Daniel when I was 19 (I know I was young).

Daniel was born in January of 2007 at 5:30am. My pregnancy with him had a couple scares. My blood pressure was consistently high and there was a time when I was 5 or 6 months along they couldn’t find his heartbeat. I was terrified! My doctor’s office was next to my twin sister Becky’s work so I went in crying and she left to go to the hospital with me. The hospital couldn’t find his heart beat either at this point I was crying. The nurse brought in an ice cold pitcher of water and told me to drink it really fast. I did and Daniel woke up. They said he must’ve been sleeping and positioned just right they couldn’t find his heartbeat but he was okay.

Fast forward because no one wants to hear the details of labor. I can say back labor sucks! And Daniel was my child born with no epidural or pain meds because there was no time for either by the time the hospital believed i was in labor 🙂

Daniel was born a healthy 5lb 12.4oz baby. Very teeny tiny even his newborn clothes were huge on him. My sister went and bought him some preemie clothes and those fit perfect. When Daniel was two months old we moved back to Iowa just me and him.

Fast forward again to when Daniel was 3 years old. He had begun having what i thought were 45 minute to 1 hour long tantrums. I often times wasn’t even sure what had caused him to become so upset, it seemed like almost anything could bring them on. I tried talking to his doctor and was told “that’s normal it will get worse before it gets better”. I didn’t think this was “normal” (whatever that meant to the doctor). Daniel would kick, hit, throw his toys I was growing really concerned. During this time I found out I was pregnant with my second child.

I kept asking the doctor can I get a referral to have Daniel evaluated something is going on, I told him kids don’t just have tantrums for that long for no reason. He kept telling me it’s normal (I’m not a fan of that word). At this point I was so fed up with the doctor that I told him “give me the referral to Iowa City or you can take Daniel home for a night and see if you still think it’s “normal” behavior”, needless to say that got me the referral.

It took over a year for Daniel to be seen in Iowa City. Turns out his referral had gotten lost somewhere along the line. During this time Daniel had started preschool and was a big brother. Preschool started out well for Daniel but things changed. He didn’t want to go, he was having behaviors I hadn’t seen before. **TRIGGER WARNING**

Further talking with Daniel I had learned he’d been sexually abused at school by a staff member. Turns out the perpetrator had numerous victims my child just happened to be the youngest. The perpetrator is now in federal prison for the rest of his life for the crimes he committed. I immediately got Daniel a counselor and one for myself. I beat myself up. I’m his mom I’m supposed to protect him and I couldn’t. Counseling helped both of us alot.

Fast forward to Iowa City Daniel is about 7 now. We finally get to see a lady there and she is amazing!! Daniel had his evaluation and I finally had some answers.

Daniel was diagnosed with ADHD, ODD, Mood Disorder, and PTSD. I was so relieved to finally know what was going on so I could finally help him! Daniel is a very intelligent kind hearted boy and all people could see were his “bad” behaviors. But that quickly changed!!

I started reading up on his diagnoses, joined support groups, found a counselor that understood his diagnosis, got Daniel an IEP. In time he was doing better at school, no more throwing things, no more self injurious behavior Daniel was happy!

Daniel is now 10 years old. And after advocating and fighting for so long to help him our lives had mellowed out. Daniel was and still is a fantastic big brother even helped name his baby brother! Daniel enjoys math, reading, building with Legos, playing in the dirt, and video games. He’s done so well in school that he was fully integrated back into the gen. ed classroom by last school year. I’m so proud of how far he’s come and so is he.

Daniel intends to play Cello at the intermediate school in the fall, wants to join several other programs they offer as well. Daniel enjoys spending time with his best friend, our family, and at OLC At Play helping me volunteer!

So there’s Daniel and some information about him, and how we finally got his diagnoses. He’s my sweet boy and I wouldn’t change him for the world!!

 

Be blessed

Amanda

 

Meet Daniel

Let me introduce myself…

Hello everyone!!

My name is Amanda Reinhart and I’m the newest Admin to the Our Loving Children blog!

I’m going to tell you all a little about myself and over the next couple of days I’ll tell you about my kids and our journey so far. 🙂

I grew up in Mason City with a twin sister and younger brother. As a teenager I volunteered at Washington Early Childhood Center. It was my first hands on experience of what it would be like to be a teacher or teacher’s aide, and my first time working with children with Autism and other special needs. From then on I knew i wanted to work with children.

I am a single mom to two wonderful boys! Their names are Daniel who is 10 and Samuel who is 5. You’ll learn more about them in a couple days! They both have their own set of special needs. My children are my world, my life, my everything.

This fall I intend to go back to college! I want to take a sign language class, along with some teaching classes. I’m also trying to decide if I’m going finish my Medical assistant degree first or double major. Decisions.

I’ve been a volunteer for Our Loving Children for just about a year now and I love it. Daniel and Samuel get to volunteer with me and it’s great to give back to an organization that does so much for our community.

My kids and I have a cat named Periwinkle but we call her Peri. She got her name for her eye color and because we wanted to be able to say “hey, where’s Peri?”. For those not familiar that saying is from Phineas and Ferb a Disney channel cartoon my kids and I enjoy. We also have a now 15 year old dog named Annabelle. We rescued her in January of 2017. She’s been an amazing addition to our family and I am so glad we could rescue her.

I like to describe myself best as Mom, Advocate, and Volunteer. You’ll get to know more about me and my family as I continue to post to the blog!

Have a wonderful day everyone!!

Be blessed

Amanda R.

 

Let me introduce myself…

A Brand New US…Our Loving Children!

 

To Our Special Families, Friends, and Partners:

For the past 4 years we’ve helped our special families and the community by providing support, resources, advocacy, community events, business partnerships, the opening of Sensory World, etc. We’re proud of what we’ve accomplished and we’re committed to becoming an even better partner for the future.

We are proud to be launching a new name and brand for our organization that better communicates our commitment to helping special children and our connection to our families as a whole. As our organization has grown, so has our outreach to families and businesses. This growth has placed us in contact with other businesses that are similar in name and nature and therefore has required us to take this rebranding step in order to distinguish us from others. As a valued supporter and partner, we want you to be the first to know!

Our new name is “Our Loving Children”!  Our phone numbers and addresses will not change. Our new website is www.ourlovingchildren.org  Our new email address is contact@ourlovingchildren.org    Our previous contact information will be automatically directed to these new addresses for the next few months to help make a smoother transition.

Our longstanding commitment to exceptional care, advocacy and support will continue with our new name. Thank you for giving us the opportunity to partner with you, we look forward to all of the wonderful things the future holds for Our Loving Children, our special families and for our community!

 

 

A Brand New US…Our Loving Children!

I Run 4 Michael

A couple of weeks or so ago a friend of mine asked if I had heard of a group called I Run For Michael.  I hadn’t but was pretty interested.  That night we got online and checked out http://www.whoirun4.com/.  Wow!  This group has people all over the world that run because they can for those who cannot.  I urge you to check out the website and read about this great non-profit organization that provides yet another arm of support for your special needs child.  They also provide runners for adults so this is not just for kids.  We signed Taylor up and she was matched within a few hours.  Then you start to get to know your runner and develop a personal relationship with them.  It is exciting and we have already formed a bond and gained great support for our daughter!  The other day Taylor got a medal in the mail that her runner Denise had won.  It was so cool!!!  You can also check out the I Run 4 Michael Facebook page!  Truly an amazing experience!

I Run 4 Michael

Is she tired?

I get this question often.  When someone asks Taylor a question or says hi to her, she doesn’t respond with her voice.  I always feel the need to just jump in and respond for her.  If she doesn’t know you she will often look away or put her head down.  Then people ask, “Is she tired?”  It may appear that way and often I just say yes, she is and move on with my day.  I try not to let it bug me most days, but to be honest it often does.  I know people are being nice and I truly appreciate people acknowledging her and talking to her like they would anyone else.  It is just that it starts to tug at the heart strings.  I think in my head, no she cannot talk.  Then my mind takes over and starts thinking of all of the things she doesn’t get to say with her voice.  I need to try to remember that I am her advocate, I am her voice,  and that when people ask this I should use this opportunity to explain why she doesn’t answer.  Spread awareness.   That is my mission.

#LOVE #SUPPORT #ADVOCATE #TAYSVOICE

 

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Is she tired?

Diamonds!

Take a look at this absolutely stunning diamond ring from Stadheim Jewelers! This ring is 14K YELLOW AND WHITE GOLD “2US” FASHION RING BEZEL SET WITH 2 DIAMONDS, .40CT. Total retail value of this ring is $2000.00.This will be given to one lucky winner of the Diamond Champagne Raffle at the SKSL “Reach for the Stars” Gala on January 23rd! Tickets are $50 for this raffle will go on sale soon! The $50 ticket includes one chance to win this beautiful diamond ring generously donated by Stadheim Jewelers AND a glass of champagne to toast the evening!

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Diamonds!

2016 Reach for the Stars Gala!

I can’t help but take a deep breath and hold back the tears at the same time. Happy tears! We have had such a wonderful reception from the community when talking about our upcoming Gala! So many caring people ready to jump in and help create a community that not only accepts but welcomes our special kiddos with open arms. Thank you…

As of now, we have some great PLATiNUM SPONSORS lined up for our Gala. Platinum is the highest level of support! They are committed to helping our special families…above and beyond what anyone could expect. These business and, might I remind you…the wonderful people behind these business care. They really do care! They care about building a community that supports everyone! A community that I proudly call home!

So if you find yourself out and about in the North Iowa Area, stop into these businesses to show your appreciation and support! It is people and businesses like these that make our world a beautiful place!!

 

2016 Reach for the Stars Gala!

Power in Support

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Above: Taylor jet-setting to her first Phelan-McDermid Syndrome Conference.

When my daughter Taylor was diagnosed with Phelan-McDermid Syndrome she was not quite 2 years old. In fact, at the time her syndrome didn’t even have a name. They told me she had a chromosome deletion called 22q13.3 deletion. They also handed me a packet of very general information about chromosome anomalies and gave me a website. After giving us ALL they had, they said do you have any questions. My husband and I smiled and said nope, we are good. We were dying inside, yet knew they had nothing more to offer us. It took a few weeks to digest, okay maybe a few months. I started researching and I went straight to the website the doctor gave me. It turned out that Taylor was one in about 450 kids in the WORLD with this type of chromosome abnormality. It is generally a random mutation in most children who have this, also true in Taylor’s case. My husband and myself were not carriers of this mutation. We were virtually alone. No doctors in our area had a clue what this was.   Everything on the internet was not specific (not to mention scary) to Taylor so it was hard to gather facts that way. We were devastated. We had no idea what to expect or what was coming next. Words like non-verbal, seizures, heart problems, kidney problems, gross-motor delay, and yes-even mental retardation we flashing in our brains constantly. Alone. Scared. Helpless. Grief. Then, one night I was surfing around the website that the doctors had given us, www.pmsf.org. I found that there was support groups spread across the United States. I found that this very small group of people had found each other and come together to help one another. I joined a yahoo group that exchanged messages and posts about medical findings, questions, frustrations, and even triumphs. It saved me. Literally saved me. We found out that there was a bi-annual conference held in South Carolina where all of these people came together and met each other. We had to go. Soon people in our community were coming out of the woodwork to make sure we could attend this conference. The feeling of being alone was starting to fade, a bit. We began to receive support from everywhere. People we didn’t even know got involved. Our grief started fade, a bit. Finally, the day had come and we headed to South Carolina! It was the best week of our lives. We learned so much and met so many awesome people. We felt like we belonged somewhere. We felt like we fit in. We felt understood. People got us. AMEN. Now I am part of an amazing group on Facebook that is my saving grace. Without my Facebook group I do not know where I would be. I learn so much from the parents on that group. I have become great friends with people on that group, people I have never met. We help each other learn knew things about our kids. When I am confused, scared, need answers, or even to share our small victories- I turn to the group. Now the grief only hits once I awhile when you least expect it. Even though Taylor is still part of a very small group, now 1 in 1300, I know we are not alone.

 

Support can do so many things for you and your family. I don’t know where we would be without the support that our family has received from family, friends, the community, strangers, and my coveted Facebook group. Support has changed our family’s lives forever.

 

All of my experiences with support are why I joined Special Kids Special Love. I am there to give and receive support in any way that I can. There is so much power that comes from support. Without the support of so many I am frightened to think where we would be today.

 

Whatever is going on in your life, I strongly encourage you to find support! There is power and knowledge in numbers so surround yourself with like-minded people and gather everything you can from them. Talk with them, learn from them, cry with them, laugh with them, move mountains with them.

-Kathy

www.specialkidsspeciallove.org

www.pmsf.org

Power in Support