A Parent’s Fight For Special Education Services

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There are many things in life that I take for granted and, before becoming a mom, I assumed that public education for my children would be one of them. I was wrong. My children go to public school but I no longer take their education for granted and that’s because I’ve had to go through numerous fights with the school districts to get it. This is a fight that many parents of children with special needs know too well.

Lucas is on the Autism Spectrum so he is protected by a Special Education law called the Individuals with Disabilities Education Act (IDEA) which says it is his right to receive free appropriate education (FAPE) from the school district. Appropriate education should be uniquely designed to meet his needs. The problem develops when the parent and school differ on what “appropriate” means and sadly, as I’ve learned, this doesn’t mean they need to provide the best education for him, just an adequate one that’s enough to get him from one grade to the next.

My fight for my youngest son began before his first day of school even started. Having been in the state’s early intervention program, his first day of public school was the day he turned three years old which happened to be during the district’s extended school year (also known as ESY or summer school). The school insisted he be put in their general education preschool room even though I was adamantly against it for a number of reasons. They told me they’d see how it went then we’d meet once the new school year started and if he needed to be moved to their special education classroom they’d do that (after the school year had started). I repeatedly told them I didn’t agree with that decision but in the end had no choice but to let the school put him where they wanted to put him for ESY.

His first day of school went horrible, as I had expected. The environment in that classroom became unsafe for both him and the other children. He had numerous meltdowns and had escaped the room a couple times. The staff in there was not trained to handle children with special needs. And I’ll never forget the homework he came home with that first day. My child, who had just turned 3 that day and had a speech delay, was being asked to “describe a baseball game using your five senses”. This child who spoke only a handful of words, didn’t know what baseball was and didn’t know any of his five senses, was definitely in the wrong classroom.

The teachers in the room, and finally the Principal, also ended up realizing that the general education setting was not appropriate for him but I still had to fight for weeks to have the meeting scheduled for before the school year started. They kept insisting we’d just have another meeting once the school year started and then he was would be switched to the other program. To me, it didn’t make sense to start the school year in one program and move him a week in and I believed that would be detrimental to him, causing unneeded stress and problems. They finally agreed to have the meeting before the school year started and changed his placement to a Special Education classroom.

He was put into an appropriate classroom for the school year that was specifically designed for children who had Autism. It was a small class size with numerous aides and therapists in the room at a time and ran a couple hours longer than the typical preschool day. There were picture schedules, repetition, built in therapy and everything my son needed- including a room staffed with people that understood and had experience working with children on the Autism Spectrum.

Lucas had two great years of preschool. The last year he even started taking a daily trip to the general education classroom (accompanied by an aide) to spend 15-30 minutes at a time in there, testing a new environment. Having found success in those short periods of time in the general education class, Luke’s team decided to give him a split day when he went to Kindergarten. Since our neighborhood school didn’t have an Autism specific classroom they bussed him across town, to the school that did. Though our district only had half day kindergarten, Luke would spend the whole day at school because they felt that academically and socially just a couple hours was not enough for him. He would go to AM Kindergarten in their Autism classroom, eat lunch, and then spend the second half of his day (accompanied by an aide) in the PM general education Kindergarten classroom. It was the best situation that I could have dreamed of and it was designed to give him everything he needed to learn. He’d have one on one assistance and a smaller group for some of the day but still get some time to interact with children who were higher functioning and could model language and social skills which is what he had been missing in the Autism only classroom.

A few months into the Kindergarten school year we ended up moving to a new district and I found myself fighting for his educational needs again. This was a smaller district with a smaller Special Education staff and budget. The district didn’t offer full day kindergarten and wouldn’t allow him to go to both the AM and PM sessions. They also did not offer a special education classroom or would bus him somewhere that did like the other school was doing. So they cut his school day in half, took away his time in a special education classroom, took his bus services away and reduced the amount of time he worked with therapists. They still gave him an aide to help him as he navigated the school day but I felt completely defeated. Almost everything I had fought for was gone. To make matters worse, my son went from being in the middle of his class academically, to being in the bottom one percent by the end of his Kindergarten year.

So he started off first grade extremely behind and, though I think he made huge advances during his first grade year, he is still behind. Now he’s headed into second grade next year and I’m back to fighting the school district again. This time I’m trying to get him in our district’s extended school year program (or ESY) for academics. This program helps children who have shown academic regression in the past so that they don’t fall even farther behind than they already are. Though my son has in fact shown regression previously, and was in summer school last year, I was told that this year the Special Education director of the district said he doesn’t qualify because of his test scores. My son, who is going into second grade and can’t put letter sounds together to read words, does not qualify for academic summer school because his reading test score, at the bottom 27% of his class, is not “low” enough? That reading test score of 27% was with assistance, since my son requires help taking all tests, which only makes me wonder what his test scores really would be if he had taken it himself and not had help. In my eyes he is qualified because he has previously shown regression and is behind academically so I have to call the Special Education Director and try to get her to reverse her decision by asking her to actually look at his file, his IEP, his teacher’s notes and perhaps even talk to his teachers and therapists (who all felt he would benefit).

I just wish that parents of children with special needs didn’t have to fight for Special Education services that our children need. Our children are entitled to an education that is tailored to their special needs and a placement that will allow them to make educational progress. I’m not satisfied with my child just barely making it to the next grade. Scoring in the bottom 27% on a reading test (that he had help with) and being told the school district views that as “acceptable”, when reading is the basis of almost everything else he will do in school, is not okay. I want him to have a shot at success, like every other child does, and I’m going to fight until he has an even playing field.

Have you been through a similar struggle? I’d love to hear from you in the comments below.

 

10 Great Educational Products For Children On The Autism Spectrum

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Thanks to Lakeshore Learning for sponsoring this post.

 

In honor of Autism Awareness Month, I wanted to share 10 great educational products for children on the Autism Spectrum. Most of these are products I’ve used with my own boys or in a classroom setting. They also have the added benefit of being great for all kids so even siblings or classmates not on the spectrum can enjoy them!

Magna-Tiles

These are fun to build with and were a favorite in my classroom when I taught Pre-K. I love these for children on the Spectrum because they are magnetized and stick together which helps minimize frustration for children as they are trying to build. Many children stick with simple designs but kids can really use their imaginations and build something fun with these.

Good For Me Reward Kit

Sticker charts work amazingly well for Lucas and many children on the spectrum. Being able to see his progress and how far he has to go is very motivating for him and encourages him to continue good behavior and other tasks we want to see him do. A clear goal and reward planned ahead of time are ideal for these types of charts.

Following Directions Building Sets

Have a little one who has a hard time following directions? This building sets bundle is perfect for them! I like this for Lucas because he has a hard time following directions that are more than just a step or two and this will help him practice the skills he needs to work on. It also allows children to start with easy creations and then build up to more complicated ones which gives them a sense of accomplishment.

Flip & Read Sight-Word Sentences

Learning sight words is all about one thing- repetition! Every child learns things in different ways and I love this set of books to help kids practice the sight words they need to master before they can start to read. I think this is great for Lucas because he hates plain flashcards and teacher or parent directed tasks. With these he creates the sentences he needs to read which gives him just enough control of the situation to actually be willing to sit down and do this.

What Should You Do? – A Game Of Consequences

In this fun-filled game of consequences, players face everyday dilemmas that deal with topics like honesty, bullying, manners and more. As children race around the game board, they take turns deciding what they should do in each situation—moving closer to the finish line with each correct answer! For children who are still learning social skills this game is perfect!

Understanding Addition & Subtraction Using Manipulatives

Kids learn best through hands-on-learning, especially when the concepts are as abstract as mathematics. This set of manipulatives help children connect an object to a number for learning addition and subtraction.

Sensory Ball Set 

This set can be used for a number of things, from playing catch and practicing hand-eye coordination to using the smaller ones as fidgets. These balls are also a great way for kids with tactile sensory issues to get used to touching different textures.

Real-Working Cash Register

Once children start learning about money this cash register is perfect for helping them practice money skills. We love setting up a little store with empty boxes and then “shopping” and paying for our items.

Kids Can! Resolve-A-Conflict

With siblings, conflicts are bound to arise so having this can of tools on hand is wonderful. Whether children decide to pick and number, draw straws or roll a dice, they learn to solve their own problems. We are really enjoying using this set and I feel that our house is much more peaceful now.

Engineer-A-Coaster Activity Kit

This fun kit lets children create a “roller coaster”. It provides hours of play as children learn to follow directions and learn from trial and error. I like that it’s large enough for two children to play at the same time so children can work together to build it (or at least side by side).

Find more toys and educational products here. What products do your children love to use to learn and practice important skills?

How To Host A Playdate That Includes Children With Autism

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What if your son comes home from school wanting to invite a new friend with autism over for a play date? Perhaps there is a new little girl with Asperger’s in your daughter’s class who could use a friend? For parents of non-autistic children, the idea of having a child on the autism spectrum over for a play date can be a little scary.  But it doesn’t have to be! Cara Kosinski, long time pediatric occupational therapist, speaker, author of The Pocket Occupational Therapist Book Series, and mom to two boys with autism, has ten insightful tips for parents about what they can do to create a great playdate among children of all abilities.

(Alicia’s note: I know a list of how to host a playdate may seem a little extreme and this might seem like a lot to do to have a kid over for an hour but don’t let that scare you. Giving your child opportunities to interact with children of different abilities is a great way to raise a compassionate child and enables them to see the similarities, not differences, in their classmates. As a parent of a child with Autism, I can tell you that even if your playdate isn’t perfect, the fact that you cared enough to try means so much!)

Here are Cara’s tips:

Practice playing. It may be hard to believe, but the act of playing doesn’t come naturally to some kids.  For example, children with autism often have difficulty with taking turns, having conversation, and interpreting nonverbal gestures. Practicing and explaining this to your child may help him to feel more comfortable. Together, discuss strategies that can be used to help facilitate play. What is a facial expression?  Make different faces and ask your child to guess your emotion.

How do I find children with common interests?  Teachers are amazingly insightful and may provide wonderful help to identify the children who tend to play together and enjoy similar interests. Volunteer in your child’s classroom to see who your child is interested in playing with. Additionally, birthday parties are great opportunities to observe those children who may be a good match for a playdate. Clubs and activities allow children with similar interests to enjoy each other’s company.  My son showed an early interest in chess. I often arrived early to pick him up from chess club and to determine who showed interest in my son. The same is true for Lego club, music classes, art, or sports.

Remember that parents of children with special needs are used to answering questions about their children and are often quite comfortable discussing ways to help create successful social interactions. Also, be mindful that many families’ schedules are busy but a child with special needs may have additional appointments for therapy, medical, and developmental concerns.  Be flexible in scheduling and do not be offended if the playdate needs to be re-scheduled.

Shared interests can make a playdate successful.  Identify what the children have in common.  Build activities upon mutual interests. So, set up Legos and build Angry Birds or Minecraft structures.  If the children like the same movie, set up puzzles, art, baking, or sensory play based on the movie. Consider meeting at a location such as a park or museum. Siblings should not be a part of the playdate to allow for targeted friendship building between the two participants.

Make a plan and then review it with both children who are participating.  At the beginning explain what the playdate will look like:  First, we will work on a puzzle, and then a snack, etc…. Many children who have special needs benefit from a visual schedule and knowing exactly what is coming up next.  ALL of us enjoy predictability and feel more confident with a specific plan in place. However, be flexible if any difficulties or disagreements arise.

Consider food allergies and sensitivities. When planning a snack contact the other child’s parent to determine which foods are safe for both children. It can be very meaningful for the other parent and is a critical step to avoiding potential life-threatening reactions to foods.  Do not be offended if the children do not eat what is set out for snack.  The kids may just be too excited to eat!

Be mindful of any physical limitations. For example, many children with sensory issues do not prefer to get messy, dirty or wet but they can be super at doing other things such as building or creating.  It’s always a sensitive topic to talk about someone’s weaknesses, instead ask, “What is Billy great at doing?”

Provide adult supervision and support throughout the playdate.  Since children of all abilities have different personalities, disagreements may arise.  Consider ways to resolve conflicts such as asking both kids to take five deep breaths or closing their eyes and counting to ten.  Make sure to ask the other parent which strategies are used when their child becomes stressed or upset.  Preparation is a key ingredient in successful interaction when facilitating a playdate.

Begin with short playdates of an hour. Keep the first playtimes shorter until the children become more comfortable with each other.  Consider having more short yet frequent play times with the same friend since relationships can take time to build.  It’s important to end on a good note. So, if the children are in any type of conflict, help to facilitate a peaceful ending.

There is NO such thing as a perfect playdate! Do not put unnecessary pressure on yourself.  Both typically developing kids and children with special needs are learning while practicing play and social skills.  When learning a skill we all make mistakes. Our children benefit from every social interaction opportunity. Give yourself a pat on the back and enjoy watching new friendships bloom and develop.

What would you add to the list?

Discovering An Online Parenting Community

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(Disclosure: I am proud to be working with Brawny® on a series of sponsored posts as they inspire people to be “Tough to the Core.”)

When I first entered the world of special needs parenting a few years ago I was scared and lonely. I only personally knew three other people who had children with special needs and only one lived near me. It wasn’t until I started talking about it and researching Autism and Sensory Processing Disorder that I found a whole community online and I suddenly didn’t feel so alone. I connected with other parents in Facebook groups, even creating my own for moms of children with SPD. I had hundreds of moms that I could go to with questions, share my concerns and that would join me in rejoicing over the smallest steps forward.

Recently I went through some struggles when I had to transfer my children to a new school district. It was hard and I felt like I was having to fight for my children to get the services they deserved. The main thing that got me through was knowing that I was doing it for my children but there was a part of me that thought about all the other parents doing the same thing for their children. Whether we know each other or not, we are part of a community and we inspire others around us and help them stay strong, even when they don’t feel like they have any energy to keep fighting. I felt empowered to advocate for my children and developed strength I didn’t even know I had.

On top of people I met online, I discovered numerous blogs about parenting children with special needs. I can relate to many of the stories they write so I wanted to share a few of my favorites.

24/7 Modern Mom: Alicia writes about many topics, including being a mother of triplets who have Autism. Anytime I am having an issue with special education or anything else she is always there encouraging me and I’m so thankful she is part of my online community. She wrote about the struggles many of us face on the weekends in her Autism is Hardest on Saturdays post. She also shared the painful story about her kids not being invited to birthday parties, a story that I could relate to because I’ve been in similar situations numerous times before.

Lemon Lime Adventures: Dayna’s website is the resource that I wish I would have had when the words “Sensory Processing Disorder” were first spoken to me. She covers everything from the basics of what SPD is to sensory friendly activities to sharing relatable stories about her own child. She even created Project Sensory and the Sensory Fix™ Toolkit.

Flappiness Is: This blogger has written some wonderful posts, including a series of open letters. She has a letter to the person staring at her child in the grocery store and a letter to her friends. I’m a fan of these letters and have discovered that they are more for us to get our thoughts out than they are for the people who will probably never read them. I wrote my own to my son’s social worker and it’s probably the most in-depth I’ve been about my children.

Anytime I think life is just too hard or I’m not sure what I’m going to do to get through things I think of those parents with special kids who walk this journey with me. If I’m struggling with a situation at my kid’s school or anything else comes up I reach out to other parents for motivation, ideas and support as I learn to navigate our new normal.

My online community inspires me to be tough. Who inspires you?

Want more information on how to be tough to the core? Check out the inspiration video series featuring Everyday Heroes from Brawny®: http://www.brawny.com/tough-to-the-core

Stay connected with Brawny® on Twitter and Facebook.

 

Tips For Navigating The Holidays With A Child Who Has Special Needs

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The holidays are coming! Christmastime is my very favorite time of the year. I love celebrating the birth of Jesus, giving gifts, baking cookies, holiday lights, the joyfulness, and the hustle and bustle of the season. My kids on the other hand? Not so much. I mean yes, they LOVE the whole gift thing and all the fun activities our family does, but it is also so overwhelming for them and causes many meltdowns. Additional planning goes into making sure everyone enjoys the season.

I’m excited to share some great hints to get through this holiday season for those parents of children who have Autism, Sensory Processing Disorder, and self-regulation difficulties. Cara Koscinski, MOT, OTR/L, Author of The Pocket Occupational Therapist, helps us navigate the holidays with some tried and true strategies that she personally uses and recommends to her clients.

Shopping

We are all familiar with the chaos and stress that ensues at the malls and stores during the holidays.  Scents, bright colors, and music can be extremely overwhelming to anyone, and this can be significantly magnified when a child has sensory processing difficulties.  Even standing in long lines can prove to be extremely uncomfortable for kids.

1) Allow children who are overwhelmed by sights and sounds of shopping to stay home.  Ensure that the child is comfortable and familiar with the sitter.  Allow kids to have a pajama and movie night while you’re shopping.

2) Children enjoy giving gifts, but if they cannot go to the store, purchase a few gift items for family members and set up a store at home.  We call ours, “Santa’s Workshop.”  Our boys choose a gift for family and they go to the “wrapping station.”  Help the kids to wrap and decorate the gifts with markers or stickers.

3) If a child must attend the shopping trip, schedule downtime or breaks for children to de-sensitize.  This can be located in the car with some crunchy snacks, a weighted blanket, and some calming music.

4) Keep organized and ask children to help you create shopping lists.  Permit the child to mark off completed tasks and errands so that he has some control of the situation.

5) Encourage children to make a list of preferred toys well in advance.  Give family lists of toys to choose from.  I even purchase the toys my children will enjoy and provide them to my local family members ahead of time.  We sometimes have a “trunk sale” and everyone chooses which gift they will buy and wrap for my boys.

Family Photographs

1)  Go at a time of day when children are well-rested and not hungry.  Do not rush and arrive early.  Even though you may not realize it, children pick up on your energy and mood.  Try to remain calm and relaxed about the photo shoot.  Some of the best pictures are candid and taken at un-expected times.

2)  Write a letter or speak to the photographer ahead of time.  Most studios will schedule extra time for children who have special needs.  Request a photographer who is patient.  If possible, schedule a photographer to visit your family outside of the studio.  We have found that this may be a more affordable option than a studio because of low-overhead costs.

3)  Use social stories and real-life pictures about what the child will encounter during the photography process. Practice often.  Explain that the bright lights/flashes are OK and will not hurt children.  Photography props are often wonderful distractions for kids.

4)  Permit a child to have a transition or “safe” item.  In every one of my family’s holiday pictures there’s an item that doesn’t quite belong, such as a train car or Minecraft figurine.  Remember that the memories of family being together should be more important than the “perfect” picture.

5)  Be flexible.  Consider that “fancy” clothes are often scratchy, have tags, and may contain textures that aren’t familiar to children.  Permit the child to wear comfortable versions of colors that you’d like the family portrait to have.  For example, last year we used blue and while colors.  My younger son will only wear soft sweat pants so we permitted him to wear blue sweats.  We all matched, and no one was the wiser!

Visits with Santa and Holiday Traditions

1)  Make a plan of all the things your family wants to accomplish during the holidays.  Allow your child to participate and explain that while there are things everyone must do, other things can be flexible.  For example, choose a visit to see the local holiday light show or the light-up night at the shopping plaza.  Post the schedule in a central location and review it daily.

2) As my children grew, I had high expectations that the traditions we had in our family would continue.  This was not the case.  Instead of feeling let-down, we decided to begin fresh.  Every year, I permit my boys to choose the types of lights on our tree, colored or white.  They love being given the choice.  We permit them to help decorate the tree and do not move the items which are clustered together or imperfectly perfect!

3)  No holiday is complete without the visit with Santa Claus….not true for all kids.  My older son never enjoyed or felt comfortable looking at someone in a costume.  It seemed as though he always knew that Santa was a “helper” and not the real deal.  To make the memory of Santa special, we take children who are younger, such as cousins or neighbors, to see Santa and my son enjoys seeing their excitement!

4) If children do agree to see Santa, create a social story with pictures of Santa, including his beard, velvet/soft red suit, and the setting in which Santa will be located.  Go to the location prior to the visit and watch other children.  Practice, practice, practice!

Holiday Parties

1) Give kids a job to do so that they will have a sense of belonging and success.  Even something such as helping to create place markers for seating or setting the table can give kids a feeling of accomplishment.

2)  Remember that heavy work is generally calming.  Include activities such as moving chairs, picking up and placing dirty clothes into a basket and carrying it to the laundry room, or vacuuming are great ways to encourage children to help to prepare for the party.

3) Encourage comfortable clothing and avoid new and scratchy clothing.  Family gatherings should be focused on providing fun memories and not on appearance.

4) Practice greetings ahead of time.  My son does not enjoy hugs, so we practice reaching out his hand for a handshake or high five.  Let family and guests know ahead of time that your child shows affection, but in a different way.

5) Consider food allergies and sensitivities.  Bring extra “safe” foods that match what others are eating to be sure children feel included.  For example, if cousins are eating macaroni and cheese, we prepare my son’s gluten free version and bring it along.  Out of respect for the host, talk with her ahead of time and thank her for hospitality.

6) Plan an “out” or an escape plan.  Even a short visit that is successful can create memories that last a lifetime!  Remind yourself that the holidays are about fun and not stress.  Don’t be hard on yourself or your child.

Family Gatherings

1) Utilize relaxation techniques such as deep breathing and meditation.  Social stories can help with anxiety.  Whenever possible, use actual pictures and rehearse as much as you are able.

2) Create a “safe-zone” to which the child can go whenever they feel overwhelmed.  Set a password or sign that your child can use to excuse himself.  Place a bean bag, calming music, a heavy blanket, and favorite hand fidget toy in the area.  Practice ahead of time.

3) Use calming scents such as vanilla during the party.  Essential oils can be calming in scents such as lavender.  Encourage your child to choose scents prior to the event and keep them accessible.

4) Create a letter to family members prior to family gatherings to explain your child’s wonderful progress toward goals and suggestions for conversation topics.  For example,

“Joshua’s had a wonderful year in therapy.  He’s learned how to tie his shoes, take one turn during conversations, and how to write in cursive.  Joshua likes Angry Birds.  Here’s a link to the Angry Birds’ website if you’d like more information.  Please know that even though he’s not looking directly into your eyes, he IS listening to you and loves you!”

5) At mealtime, make sure to serve a preferred food so that children who have feeding difficulties can successfully participate.  Encourage positivity during family mealtime.

6) Rehearse family’s names and match them to their picture.  We practiced family recognition beginning in November.  When the child is familiar with the person’s name, add the family member’s interest such as favorite color or food, occupation, or hobby.

What tips do you have? Share them in the comments below! :)

Being Tough For Your Kids

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(Disclosure: I am proud to be working with Brawny® on a series of sponsored posts as they inspire people to be “Tough to the Core.”)

When I had children I did all the obligatory mom things I had in my head that I was supposed to do. I read numerous parenting books, baby proofed our home, joined mommy and me groups to socialize my kids, filled the closet with tiny little outfits and basically tried everything to be a “good” mom.

The only thing I didn’t do was prepare myself to take the journey as a mom of kids who have special needs. When the boys were three and two I decided to swallow my pride and took them to the Doctor to share some concerns I had. When the Pediatrician dismissed me, I pushed because I knew, I knew, something was not right. I told him I wanted referrals and I had both boys tested through Early Intervention. With delays found in multiple areas, both boys were accepted and given speech, occupational and developmental therapies. I then pursued diagnosis with my youngest and it turns out my mother’s intuition was right. There was something going on and it was called Autism. A hard diagnosis to accept but suddenly it all made sense.

Just like there is no manual for parenting, there isn’t a step by step guide to raising children with special needs. In many ways it is harder because even once you have a diagnosis for your child, that gives you an idea of what to look into but not every child with the diagnosis is the same. Even Lucas, who has Autism, is on a spectrum. Some children with ASD are non-verbal and some can express themselves verbally. Some children I can identify as having Autism just by their outward behavior and some, like my son, you wouldn’t be able to notice the Autistic traits of until you were around them.

Once we were on the special needs path there were a variety of obstacles in our way. Hours of therapy each week that interfered with work, six month wait lists to get an appointment to see the developmental pediatrician and meeting after meeting with the public school system to get services my children deserved. I did everything I could to help my boys catch up to their peers and ensure that, once in school, they’d be able to learn and grow.

Sometimes you are tough because you have to be. Special needs parents have to be tough for their kids because we are their advocates and {sometimes} the only ones that will be looking out for their best interests.

Brawny® Paper Towels and Wipes have always stood for good old-fashioned toughness and that’s why Brawny® wants to share the inspiring stories to those everyday heroes out there – the folks who truly define what tough is.

Want more information on how to be tough to the core? Check out the inspiration video series featuring Everyday Heroes from Brawny®: http://www.brawny.com/tough-to-the-core

Stay connected with Brawny® on Twitter and Facebook.

 

Brawny® Partners With The Wounded Warrior Project®

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I am proud to be working with Brawny® over the next couple months to share about their partnership with Wounded Warrior Project®. The Brawny® brand has donated $1.4 million to the Wounded Warrior Project®, which, it says, shares the same brand spirit and values: an inner strength that emboldens and inspires people to be “Tough to the Core.” WWP helps wounded servicemen and women adjust to civilian life and persevere through the visible and invisible wounds of war. US Service men and women are some of the toughest people. They put themselves in harms way to protect us and it’s a choice that they’ve made that I will be forever grateful for.

Another group that comes to mind when I hear the word “tough” are parents of children with special needs {and the children themselves}. These moms and dads have to be tough, not for themselves but for the children they are raising. As one of those parents, I had no idea what was to come when I got pregnant but once I had my children, and disabilities were diagnosed, I had no choice to be tough because it’s my job to protect my boys and advocate for them.

More so than the parents, the children are tough. They learn to embrace their differences, overcome their obstacles and adjust to a world that doesn’t always understand them. These kids here? They make me proud to be their mom every day.

Tough is so much more than physical strength. For some, it’s about being resilient. For others, it means showing compassion. Tell us what “tough” means to you and the Brawny® brand will donate $1 to WWP for every text or photo submission, and for $5 for every video (up to $350,000). You can share your definition and donate using #ToughIs on Facebook, Instagram or visit www.brawny.com/wounded-warrior-project.

 

 

 

 

 

 

 

 

 

Stay connected with Brawny® on Twitter and Facebook. To learn more on the partnership, go to www.brawny.com/wounded-warrior-project and for more information on Wounded Warrior Project®, visit www.woundedwarriorproject.com.

Love Is Greater Than Hate

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Weeks ago a story emerged in the news that caught the attention of many people, myself included. It was the tale of an ALS Ice Bucket challenge gone wrong. In Bay Village, Ohio three teens challenged one of their fellow students, a fourteen-year-old boy with Autism to take the ALS Ice bucket challenge. But instead of ice water, the teens dumped a bucket off the roof of a house filled with urine, spit and feces on the teen.

This story filled me with sadness and broke my heart to see kids doing something so cruel to a peer. The fact that this teenager has Autism gives me anxiety as I consider my own child’s future and how he will have to not only navigate life with Autism but learn how to exist with many who don’t understand him. While he will learn a lot as he grows up, I feel it’s my job as his mom to help teach him these things.

It’s also my job to try to make the world a better place for him and to prove that love is greater than hate. When I was contacted by GiveForward about working with them to promote a fundraiser for the boy and his family, I jumped at the opportunity. More so than raising money, it is a chance to show them that they are loved. The goal is to get a thousand people to leave words of encouragement! Please join us on the fundraiser page. Give if you can but whatever you do, please leave a comment filled with love.

 

Sensory-Friendly Easter Bunny Visits {National Locations}

easter bunny

If you have a little one with sensory processing disorder or Autism you know how hard some things can be for our kiddos. Something as seemingly simple as standing in line or being in a large crowd can be very difficult for some. Knowing this, AbilityPath partners with Simon Malls across the country to host a special morning each Easter season for Easter Bunny visits (sidenote: they do Santa visits each December as well!)

These private, RSVP only, FREE events are designed to support special needs children and their families. Children will be able to pose and visit with the Caring Bunny™ in a calm, comfortable environment during mall private hours. They have taken great care to consider the sensory, physical and other developmental needs of children of all abilities.

Please note: This event is free with professional photo packages available for purchase.

See if the Sensory-Friendly Easter Bunny is coming to a location near you here.

Tips For Parenting A Child With Sensory Processing Disorder

parenting a child with spd

Today’s guest post is from Celina Miller, a fellow special needs parent who is a passionate advocate for children affected with Autistic Spectrum Disorders.

How much sensory can my kid with Sensory Processing Disorder {SPD} take?

This is a question I’m faced with daily. My 12 year old has Asperger’s and with that comes the complex and confusing world of Sensory Processing Disorder. I never know what’s too much, or what’s not enough, sensory input for him. The other day, I’d finally convinced my son to help me clean up our playroom. As he put away toys and straightened up, I started the vacuum. Immediately, he put his hands over his ears and stood completely frozen. He was so overwhelmed he couldn’t even ask me to turn it off, nor could he leave the room. I was taken aback – this wasn’t like my high-functioning sixth grader who plays basketball and loves to dance. I knew the vacuum would bother him, but I thought he would get through it and we would move on.

So why was it that this time the vacuum completely shut him down – whereas before it didn’t? Or why is it that sometimes on the basketball court he covers his ears after the crowd roars and sometimes he’s completely unfazed? I never know how much sensory exposure he can take and so I never know how much I can expose him to – which often leaves me feeling just as uncomfortable as he is.

I feel like I’m flying by the seat of my pants when it comes to my son’s sensory issues. How can I know what he’ll react to, and when? The answer is I will never know, and the truth is he often doesn’t know as he’s still learning what works…or how he can make it work for him. If you’re a mom with a child on the spectrum or who has sensory integration dysfunction, you totally understand how I feel like the rug has been pulled out from underneath me, which is probably how my son feels when he’s overstimulated.

Here are five thoughts that help me, and may help you, get through a day in the life of the maze that is sensory integration disorder.

1. What doesn’t kill us only makes us stronger. A phrase I live by personally, but I have found it translates in the sensory world as well. I don’t avoid stimulating things. Exposing my son to different types of sensory stimuli helps him learn to cope with it and to be prepared the next time he comes across it. And while he may be bothered, it really won’t kill him. He will get over it. I never want to hinder him by what I think he may or may not be able to handle. In this world, I have to take his lead, give up control, and let him learn what works for him and what doesn’t.

2. Every day is a new day, and every day is different. I have learned that each sensory experience is interpreted differently every day. And depending on what else is going on during that experience, my son’s reaction may or may not be different. I’ve come to know that even a slight change in body temperature will make his sensory dysfunction… more dysfunctional. Just like he wakes up every day prepared for the unknown, so am I.

3. Talk about it. When I’m able to talk to my son about his sensory experience, we both understand it better. When I ask him to verbalize what he saw, heard, smelled or felt, he is able to learn from his experience and perhaps handle it differently next time. This conversation also helps me to better understand what’s going on in his world.

4. Don’t sympathize, empathize. I will never feel sorry for my son, I think he’s an amazing person with amazing gifts. He also has challenges to overcome and I do have empathy for that. I hurt when he hurts, and I smile when he smiles. When he’s left overwhelmed, in a different way, I am too. It is in this way that I can empathize with him.

5. Be an advocate. This will help you both. When I’m able to go before my son and tell people he has asperger’s – like at school, church or in sports – I’ve removed the elephant from the room. Is my son amazing and remarkable? yes. Is he also quirky and unbelievably inquisitive? yes. And when others have the opportunity to prepare themselves for the possibility that he may become overstimulated on the basketball court or during a burst of applause in the middle of the school play, everyone has the benefit of more understanding. And this understanding gives them the ability to see my son not for a quirky kid, but for that amazing boy who is gifted and overcoming challenges most of us couldn’t imagine. It gives people an opportunity to admire him – just as I do.

Celina Miller’s Bio

Celina Miller is the mother of Jim, who was diagnosed with Aspergers Syndrome when he was in the 2nd grade in 2009. Celina has worked tirelessly to gain the education support for her son’s civil right according to the Individuals with Disabilities Education Act (IDEA). Celina has worked with the Oasis Center for Women and Children and has spoken on the importance of supporting children with mental disorders and their families. She has also been active in fundraising and reviewing grants with Autism Speaks in the Birmingham, AL area

(All thoughts above are those of the guest post Author.)

 

Pictures With Santa For Children Who Have Special Needs

caring santa

Caring Santa is an opportunity for children with special needs and their families to enjoy a photo session with Santa. Extra care has been taken to support the sensory, physical and other developmental needs of children so they can enjoy this wonderful holiday tradition.  To learn more and find a location near you check out the website here.

Please Be Patient This Halloween

be patient this halloween


Author unknown. I found it on Facebook two years ago and still haven’t tracked down the original author.

 

 

The Sensory Child Gets Organized

sensory child

As a mom of a child on the Autism spectrum and another with un-diagnosed but suspected SPD/ADHD, life is sometimes completely chaotic at home. I know this is because my kids “hold it together” all day at school and then can finally be themselves at home but it is still extremely stressful at times. Since October is ADHD Awareness Month I was offered a book to review called “The Sensory Child Gets Organized” that promised to share “proven systems for rigid, anxious, or distracted kids” and was skeptical at first but so far I’m learning a lot from it.

In the book the author, Carolyn Dalgliesh, provides simple, effective solutions that help kids thrive at home and in their day-to-day activities and helps parents:

  • Understand what makes their sensory child tick
  • Create harmonious spaces through sensory organizing
  • Use structure and routines to connect with their child
  • Prepare their child for social and school experiences
  • Make travel a successful and fun-filled journey

With The Sensory Child Gets Organized, parents get an easy-to-follow road map to success that makes life easier—and more fun—for your entire family. I like how the book includes picture examples of schedules and spaces along with writing space for parents working through the book. There are also some great resources in the back of the book.

Here are a few tips that I’ve learned so far and plan on implementing with my kids:

1) Arrive at birthday parties (or any event where there will be a lot of people) early so the kids can have some time to get comfortable with the location in a small group before there is a large crowd

2) When thinking about the upcoming holiday events make a “must do” list for your sensory child. Consider letting them skip events so they can have a little downtime and enjoy the events you really want them to go to.

3) Organize feelings by having the child rate where they are on a scale of 1 to 10 (with words or pictures). Jacob seems to get just as upset about tiny things as he does about big things so I want to start having him rate his feelings so he can start to realize when he is “just a little” mad vs. “really” mad and learn to react accordingly.

4) Build flexibility one small step at a time. One example was to create a “choices when there is a change” jar that can be used when something in their schedule changes. If something gets cancelled and they are very upset they can pick an alternative activity that they love doing that will make the activity getting cancelled a little easier for them.

I’m looking forward to reading the rest of the book. If you have a child with some sensory processing difficulties I thing this book will be beneficial in helping you create the best home environment for your kiddo as possible.

(Disclosure: I received this book for free but all thoughts are my own.)

 

Sevenly’s Weekly Cause: National Autism Association

sevenly 1

I was so happy to see that Sevenly, a for-profit social good company that I love, is supporting another Autism related cause this week! $7 from every single item sold goes directly to the National Autism Association to provide behavioral therapy or communication tools to children with Autism. If you have a loved one with Autism this is a great way to support the cause both financially and with a conversation provoking shirt.

I want to get this fabulous shirt for Lucas:

And this is my favorite one I’d wear myself:

Totally cute, right!? Learn more about this week’s cause and/or purchase an item from Sevenly to support those with Autism here {but keep in mind that each week they change causes so hurry!}

My Son’s School Is Going To Break The Law Everyday Unless I Stop Them

Jacob starts Kindergarten tomorrow. Yesterday I stopped by the school because I still didn’t know if my son was in AM or PM Kindergarten even after calling the school last week (they claimed they didn’t know) and emailing the Principal over a week ago (she later claimed my email went to spam). So the secretary looked it up and told me his classroom and teacher and I said, “okay so that’s a Special Education classroom?”. She told me it was not so when I told her my son was supposed to be in a Special Ed class she went in to consult with the Principal.

So the Principal comes out with her and says that that classroom is his homeroom and he also is in the Special Education classroom. I told her he wasn’t supposed to be in anything but a Special Ed contained classroom and she told me that his classroom was “unable to take attendance” (which makes no sense but whatever) so he would arrive at school, go into the General Education classroom (during the most unstructured time of day), stay for a few minutes and then go to his Special Ed classroom.

To some of you, being in a different room for a few minutes may seem like not that big of a deal. I know I would have thought the same years ago but here’s my problem…. My son has difficulty transitioning and difficulty in unstructured environments with little teacher direction. Putting him in a classroom with no teacher directed activity and kids coming in and wandering around is bound to cause issues. This is the worst time of the day he could be put into this classroom. His day would start off on the wrong foot for him because he has to transition off the bus, transition into the chaotic classroom, transition out of that classroom, and transition into his Special Ed classroom which is a lot of transitions in a 5-10 minute period of time for any kid, but especially one who has difficulties transitioning.

Then there is the fact that they are totally ignoring his IEP which is the biggest problem here. I checked it over again (it was written in the Spring) and like I remembered it says he is only supposed to be in the General Ed setting for PE (with an Aide) and Speech (with his therapist). The IEP is a legally binding agreement so what they are telling me they are going to do every single day is against the law. (Which makes me wonder what else they would do during the course of the day that would violate his IEP…)

So at this point I’m frustrated and ready for a fight today. I plan to reach out to the School District but that is not something I should have to do. The school should put my children’s needs first but they don’t. What is sad is that for every parent fighting the schools, I imagine there are so many others that don’t stand up and say anything because they don’t realize the school is trying to pull a fast one on them.

Have you ever had difficulties with your child’s school following the IEP? How did you handle it?

 

Free Disability Awareness Activities for Kids

disabilities awareness

As a parent of a child with Autism I am anxious for the start of the school year. As much as I worry about how well my son will do, I worry even more about how others will treat him and accept him. I was really excited to get an email from Easter Seals about their free FRIENDS WHO CARE® disability awareness program that helps parents and educators teach kids about children and adults with disabilities. My hope is that every parent will teach their child compassion and acceptance for others.

Sponsored by long-time Easter Seals partner, Friendly’s Restaurants, LLC, FRIENDS WHO CARE is an interactive program that helps students learn how kids with disabilities go to school, make friends and play. It encourages kids to accept their peers with disabilities as people first, and to find ways to include everyone in school and after-school activities.

FRIENDS WHO CARE® is also fun! The curriculum explores a range of disabilities and includes specially crafted learning activities, hands-on exercises, guided discussions and guest speakers. It starts with an introduction to disability, and looks at vision, hearing, and physical disabilities and then at learning disabilities including ADHD, autism and intellectual disabilities.

Visit their Web site to download the free FRIENDS WHO CARE materials!

National Autism Associatio​n’s Give A Voice Program

Give A Voice

I wanted to share about the National Autism Association’s new Give A Voice program. If you have a child with Autism and are in financial need, this is a great program that can help you get a communication device for your child. If you are looking for a great cause to donate to, this post is for you, too. The information below is from the NAA.

The intent of this program is to provide communication devices to individuals with autism who are non-verbal or minimally verbal, and whose communication challenges put them at increased risk of injury or harm.

The NAA has very limited funding to begin this program and will provide communication devices to only fifty applicants during this initial round. Every application will be carefully reviewed and all information submitted will be verified by NAA staff. This program is intended for families who are in dire need of financial assistance and are otherwise unable to attain a communication device.

NAA’s Give A Voice Program will provide qualifying individuals with an assistive communication device including:

- A 16GB Apple® iPad® Mini (WiFi version)
- AppleCare+ Protection Plan
- Proloquo2Go Augmentative and Alternative Communication Software app
- Gripcase Protective Case with Stand – generously donated by Gripcase USA.

Grant applications must be postmarked by July 31, 2013.

For full program details and eligibility requirements, click here.

Funding is desperately needed for this program. To make a tax-deductible donation, please click here.

(Disclosure: I was not compensated for posting this and I am not a member of the NAA. I just thought this may help another Autism family.)

Free Online Autism Conference 2013

autism conference

As a parent with a child on the spectrum I want to learn as much about Autism and parenting a child with ASD as I can. There are some conferences that I learn about but leaving to attend them is usually not easy to do.

When I learned that this online Autism conference was happening again this year I quickly signed up. I only got to hear a couple speakers last year but I took a ton of notes and learned some valuable information.

If you have a child with Autism I suggest that you sign up for this FREE conference even if you can only make one or two of the webinars. Hurry though! The conference is this weekend!

Register here: http://www.momsfightingautism.com/#register

Dear Social Worker At My Son’s Preschool

Dear Social Worker at my son’s school,

Jacob is my first-born child. I loved and cherished him as a little one in my womb while mourning the loss of his twin. I walked around for months with cankles and spent half my pregnancy with my head in a toilet. I gave birth and attempted breastfeeding. I joined mommy and me groups so I could make friends with other moms and he’d have playmates. I listened to everything I could about how to be a “good mom” and tried to do it all. I read book after book at my child’s request, cleaned up mess after mess, and changed diaper after diaper.

A few years into his young life, after I swallowed my pride, I took him to the Doctor and shared some concerns I had. When my son’s Doctor dismissed me, I pushed because I knew, I knew, something was not right. I had him tested and, with delays found in multiple areas, he was put in Early Intervention. After learning he had some difficulty processing his senses I researched everything I could on Sensory Processing Disorder. I sat through endless hours of therapies to help him catch up to his peers and then he was tested for preschool and he qualified for services in the public school district. Fast forward to the end of his second year of Preschool and today’s IEP meeting where I sat, outnumbered, in a room  listening to how worried the school staff was about my son.

This wasn’t the first meeting that I’ve endured but somehow this seemed to be the most important that I’d ever have since this was the meeting where we’d start discussing placement for Kindergarten. This is a heavy decision for any parent, including myself, because it’s the one that would probably determine the rest of his school career. I knew once he was in a track at school, be it special education or children labeled with “behavior problems” or regular education, he would most likely be in that category for years to come and I’d have to fight to change it if I ever felt like the placement needed to change. I’ve heard horror stories of parents trying to change services or add things in and I knew my journey would be a long one. I wanted to make the right choices now and it was a lot of stress knowing that I was making such a big decision in the coming months.

All the school personnel on Jacob’s team shared about their experiences with Jacob, both what he was doing well and what their concerns were. Then it was your turn. Seeing that a mother was hurting, worried, and anxious it would have been best to assure me that we would figure this out as a team and that, in the end, everything would be okay. Instead you decided to use many of your words to bring me down and attack my child.

You told me how your team couldn’t be expected to change my child’s behavior that he’d spent the past four and a half years learning {assuming, I guess, that I had not spent the past four years trying to raise him correctly}. You told me how the school personnel was ultimately the one who’d decide placement for my child and basically told me that in the end it wasn’t up to me and I could make suggestions but they wouldn’t really make much of a difference. Then, and this really, really hurt, you implied that I would do anything other than what was in my child’s best interest when all I was doing was trying to understand the different options that were available.

What hurt most of all though, and what made me meltdown once I was safely in the hallway away from you, was that you spent the majority of your time criticizing my child. You used the results of a survey his current teacher and his old teacher had taken and pointed out everything that was “wrong” with my son. Not once did you point out one of the great things about him. Not once.

But that’s probably because you don’t know him. You’ve spent, what? 15 minutes with him?

He isn’t perfect by any means and when you brought up attention problems and ADHD I believe you probably aren’t too far off. All those other things you listed? Yep, those are issues I’m aware of and we are working on.

You seemed to have missed a few things though. His smile. His belief in right vs. wrong. His willingness to help. His laugh. His ability to remember the smallest detail. His inquisitive nature. His joy for life. His love for others. His excitement. His concern for friends who aren’t on the bus or at school.

Any of these qualities you could have pointed out among the other things but you didn’t. Instead, you chose to look at a chart full of dots that represented all his “problems” and completely missed the child behind the chart.

I’m begging you, next time you are in an IEP meeting, think about the parent sitting on the other side of the table and at least one positive thing you can say about their child. Of course, to do that you may actually have to get to know the child you are talking about. They are more than just a list of behaviors, dots on a chart or a diagnosis. They are special regardless of what problems brought their parents into that meeting with you.

Signed,

Jacob’s mom

AutisMate: iPad App For Children With Autism {$149.99 Value Giveaway}

autismate

AutisMate, a new iPad app from SpecialNeedsWare for those with autism, stands among the most respected and innovative options to help children develop communication and behavioral skills despite the challenges of autism. Individuals are given a comprehensive set of tools to navigate life with ease, providing for the lifelong learning, development and changing experiences of those across the spectrum.

While most autism apps on the market focus singularly on promoting one expressive form of communication, AutisMate recognizes the unique nature of every case of autism and works to first build comprehension on a personalized level to unlock a more varied set of expressions and needs. It allows children with autism along with their caretakers and teachers to easily import personal images, video, audio and other information into a visual scene-based platform.

To save time and effort, users also have the option of uploading videos, stories, and schedules geared specifically for autism from a vast content library. A GPS feature allows scenes to change according to the user’s location, making the software even more intuitive and applicable in real-time. This platform grows with the user and caters to his or her unique needs.

The research-supported app has already helped hundreds of users to fully express themselves and improve connections with their families. Many users have expressed their support for AutisMate and shared stories of success and progress. One testimonial that SpecialNeedsWare has received is from a mother of a 7-year-old boy with autism: “I recently used [Autismate to help my son] understand what would be happening at a hospital visit to have tubes put in his ears (a procedure he had done before and had gotten very upset). This last visit he was calmer and cooperated really well! Thank you so much for providing a tool that gives me a way to help my sweet, loving son find understanding by allowing him to ‘think in pictures’.”

You can learn more about AutisMate at www.autismate.com. To purchase the app on iTunes, click here. Please follow AutisMate on Facebook and Twitter.

GIVEAWAY

One reader will win a download code for this app (a $149.99 value)

HOW TO ENTER

{Do any or all of the following, leave a separate comment for each you do}

1) Tell me why you need this app

2) Share this giveaway on a social network

3) Share this giveaway directly with another parent of a child who has Autism

4) Follow @aliciamarie112 on Twitter

5) Follow @autisMate on Twitter

6) Like Making Time For Mommy on Facebook

7) Like AutisMate on Facebook

8) Comment on another one of my posts

Giveaway ends March 3, 2013 at 11:59pm Central time. Must be 18 or older to enter. Note: This giveaway is for the app only and does not include the iPad.

(Disclosure: I was not compensated for this post and do not have an iPad so I have not used the app. I am posting in hopes that it will help one of my readers. This giveaway is not associated with Facebook in any way.)

 

 

Ability Path’s Holiday Gift Guide For Children With Special Needs

ability path logo

I’m excited to share the 2012 Holiday Gift Guide For Children With Special Needs put together by Ability Path. The guide features gift ideas from many bloggers, including a suggestion from me. If you have a child with Special Needs on your “to buy for” list you have to check this guide out.

You can find the Holiday Gift Guide here. Enjoy! :)

 

Santa Visits For Children With Special Needs

caring-santa-badge-2

Visiting Santa is a really fun Holiday tradition for most families. It’s one I loved as a child and was excited to continue with my own children. The first couple years went well but eventually, visiting Santa became a tradition that I dreaded. It has turned into an overwhelming experience for my boys and as a mom, when my children aren’t having a good time, I’m not enjoying the tradition either.

As a mother of two preschoolers with special needs I am honored that Ability Path contacted me to share about their “Caring Santa”. It brought tears to my eyes to realize that people cared enough about my children and other children with special needs that they’d work together to create this special experience for our children.

This year Caring Santa will be at over 80 locations across the United States. Here are more details from Ability Path: Due to this collaborative effort and greater mall participation this year, more children with special needs and their families will have an opportunity to participate in the time-honored holiday tradition of taking a photo with Santa in an environment set up to support the sensory, physical and other developmental needs of children with all abilities. Each mall will be asked to make some minor modifications to subdue the mall the morning of Caring Santa, and the result of that will be a magical experience for families; and some will walking away with their first-ever holiday photo of their child or family with Santa.  Until now, visiting with Santa and the Bunny really wasn’t a reality for families of children with special needs.

Last year, families who have experienced Caring Santa expressed great appreciation to participating malls for the extra care and welcoming environment.  While the accommodations made are for the child with special needs, often there are siblings who, as a result of their brother or sister’s disability don’t have the opportunity to partake in moments like these. The Caring Santa event is as much for them as it is for the child with a disability.  It is truly a morning for making memories for children of all abilities!

You can look to see if there is a location near you and RSVP by clicking here.

A HUGE thanks to Ability Path, Simon Malls, and Noerr Programs for organizing these events.

(Disclosure: This is not a compensated post.)

 

Help Another Parent Out {Quote}

Help a parent by showing up

via Autism United

Know  a parent with a child who has special needs? I’m sure that something as simple as a phone call or an offer to help will mean so much to them this holiday season!

Holding On- A Guest Post For Caretakers Of Those With Disabilities

CarolineandWillie

This is an excerpt from Caroline McGraw’s book for caregivers, Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive). To receive your complimentary copy of the book via email, visit Caroline’s blog for caregivers, A Wish Come Clear.

Pitfall #7: Holding On

I’m not a parent, so I can only imagine how difficult it must be: letting a babysitter watch your kids, letting them go off to school, to college, to the wider world. Add to that a child with a physical or intellectual disability, and the letting-go gets even more difficult. To let go, to trust another person with your child or sibling? It may seem impossible. Yet, it’s also extremely valuable, both for you and the person you love and care for.

I remember riding with my parents the first time we dropped my brother Willie off for a respite weekend. He’d be spending two days with a group in a local hotel, going to game nights and swimming in the pool. I knew that Willie would have a great time. Even so, I felt a rush of protectiveness and near-panic as he exited the car. I kept feeling a need to check on him, to make sure he was all right. I could tell that my mom felt this need even more than I did. Though she’d met the staff and talked to my brother extensively and prepared long lists of Willie’s routines and double-checked his food, clothes and medication supplies, she still felt anxious. She’d done all she could, but it all felt so insignificant as he disappeared from our sight. We all wanted to hold on to him as we drove away.

After that experience, I understand why one woman I know literally left the country after her brother came to L’Arche [a faith-based non-profit organization that creates homes where people with and without intellectual disabilities share life in community, where I served as a caregiver for five years]. She knew that, if she stayed within driving distance, she’d be sure to meddle with his care. As my mother did for my brother, this woman made extensive preparations to ensure that her brother would be well cared-for. However, when the moment to let go of her brother’s care came, she felt a strong temptation to hold on.

I’ve met other families who have held on to their children tightly over the years. They continue to treat their adult sons and daughters as children. These parents are holding on to their role as primary caregivers, even as their sons and daughters are trying to make a new home and new life for themselves. It’s always difficult to watch this dynamic, and even more challenging to be a care provider in the middle of it. The adult child in this situation has a choice: they can either rebel against their parents’ holding on, or comply with it…and feel guilty for feeling stifled. Most people choose the latter.

To parents, it can seem as though holding on in this way will keep their child safe. When I watched my brother walk into the hotel, I wanted nothing more than a promise that he would be all right. I wanted a guarantee, even though I know better. There are no guarantees. We can only know that, by holding on too tightly to those we love, we are not loving them as we should. As Martha Beck writes in Steering By Starlight: “The goal of real love is always to set the beloved free.”

We cannot wait for a time when we feel perfectly safe to open our hands.

***

Caroline McGraw is a would-be “childhood paleontologist” who digs for treasure in people. She writes about finding meaning in the most challenging relationships at A Wish Come Clear.

Something To Think About This Halloween….

halloween patience

Last year on Halloween this was passed around on Facebook and I thought it was really great so I wanted to share it with you all this Halloween:

Tonight a lot of creatures will visit your door.

Be open minded.

The child who is grabbing more than one piece of candy might have poor fine motor skills.

The child who takes forever to pick out one piece of candy might have motor planning issues.

The child who does not say trick or treat or thank you might be shy or non-verbal.

The child who looks disappointed when he sees your bowl might have an allergy.

The child who isn’t wearing a costume at all might have SPD or autism.

Be nice.

Be patient.

Its everyone’s Halloween.



This Is What Autism Looks Like In My Child {A Response To 50 Cent}

this is what autism looks like

{UPDATE: On July 8th, 50 tweeted this: “I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize.”}

Some of you may have heard of rapper 50 Cent’s recent comments on Twitter about Autism. I only heard about this today and as a parent of children with special needs, including a child with Autism, I am furious.

Here are the statements he made in response to someone who tweeted him:

‘yeah just saw your picture fool you look autistic’

‘I don’t want no special ed kids on my time line follow some body else’

{You can read the details over at the Huffington Post}

So in response to 50 Cent…

THIS is what Autism looks like in my son, Lucas

Want to support our family and all the other ones who love someone with Autism?

You can tweet: “Hey, @50cent this is what #Autism looks like! http://wp.me/pibQB-3cA via @aliciamarie112″

OR you can share your thoughts on his Facebook page

Where Are The Parents? {A Lesson On Not Judging Other Moms & Dads}

{This is a beautifully written post by a mom that was raising a child who was disabled. It had me in tears so I wanted to share it with you all. Reminds us to never judge other parents because we don’t know their situation and what they go through on a daily basis.}

Where Are The Parents? By Sue Stuyvesant, Parent

Hey everyone. For those of you who don’t know me (I’m only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder — and CUTE! OK, now for the reason I’m posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren’t more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, “Where are the parents?” I went home that night, started thinking – and boy was I pi**ed – and banged this “little” essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around………….

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, “Is this the time when my child doesn’t pull through?” They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

***

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact. [Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005].

Special Needs Moms {A Look Inside}

special needs moms

My cousin posted this on Facebook. I’m not sure of it’s origins but I just had to share :)

What Ryan Gosling Might Say About Special Needs Parenting

I could look at Ryan Gosling all. day. long. When I came upon this “Special Needs Ryan Gosling” meme over at Adventures In Extreme Parenting I had to share it. Click on the button below to be taken to all the fun :)

{You can also join in if you want! She posts new ones weekly and adds a linky at the bottom of the posts.}

Autism Awareness Wreaths

ribbon wreath

How cute is this wreath from A Modern Day Fairy Tale? I will be searching for old puzzles at garage sales this Spring so that I can make one for our door. View her post here

This cute ribbon shaped wreath can be found on Etsy in the Charlee Rose Designs shop. You can purchase it here.

This wreath was uploaded to Pinterest by the person who made it. She also has photos of two other ones that she made. See her Pinterest board here.

Free Online Autism Conference {Autism Awareness Month}

autism conference

A mom in one of my Facebook groups shared about this free online Autism conference. It’s a week long and has over 40 sessions for parents of children on the spectrum.

Sessions Include:

- How To Be An Effective Advocate For Your Child

- How to turn deficits into strengths

- How to use specific sensory activities to positively impact behavior

- 6 Tools For Managing The Emotional Aspects Of ASD Parenting

- Practical Solutions For Real Life Challenges

…and MORE!

To get more details and to register you can visit the site here.

(Disclosure: This is not a compensated post. I am sharing information from their website because I think my readers would be interested. I have registered to attend this online event but have not attended one of their previous conferences.)

Free Resources For Families From Autism Speaks

Lucas was diagnosed as being on the Autism Spectrum on Tuesday and since then I have spent hours looking for resources to help me understand Autism and how best to help him. I came across some free resources offered by Autism Speaks.

One is a 100 Day Kit to help families make the best use of the first 100 days after their children are diagnosed with Autism. It  is downloadable or, if your child has been diagnosed in the past six months, can be mailed to your home or picked up from a local FedEx Office location. The second resource is an Asperger Syndrome and High Functioning Autism Tool Kit. Both resources are FREE.

***

If you know of any other resources I’d love to hear about them :)

{Chicago Suburbs} Special Kids Day

One of my friends in a Facebook group for moms of children with SPD posted about Special Kids Day and I just had to share with you that are local. Special Kids Day is a day where all children with special needs and their families are invited to a FREE Holiday event just for them. Santa Claus will be there for children to get their pictures taken. I love that they are having this event because it’s so hard to go out in public and get stares or comments and this is pretty much a safe, non-judgmental event where everyone can be themselves and have fun in an environment designed to accommodate their special needs.

EVENT DETAILS:

Cyber Monday Deal: 40% Off Soft Clothing {Perfect For Children With Sensory Issues}

soft gift guide new


{Thought I’d share this for all the parents of children who have sensory issues, like mine do}

HAPPY CYBER MONDAY! Soft Clothing is having an incredible sale event on their website:

40% off storewide until MIDNIGHT tonight!

Use code at checkout: cybermonsoft.