When You Feel Guilty for Not Being a 'Superhero' Special Needs Parent

Parental guilt time. The other day I unwittingly sent my 7-year-old autistic son to school with the beginnings of a stomach flu. I am fortunate in that he is verbal and did tell me his tummy hurt when we arrived at the drop-off gate that morning. But when I pressed for details, he struggled to indicate he had to use the bathroom. OK, this was doable. I hurried him through the gate, explained the situation to the classroom aide and off he went just as the bell was sounding the beginning of the school day.

                                                                                                     

In my mind, the problem was solved, so I didn’t give it a second thought. A short time later when the school nurse called to report he’d vomited all over the science lab, the guilt came rushing in. He’d obviously been feeling worse than simply needing a potty break but was incapable of telling me. Instead, he soldiered through his daily schedule as best he could until, well, he couldn’t. How had I missed this? I’m certainly no stranger to playing detective and trying to decipher things he says. I couldn’t help but feel I totally blew it in the mommy department.

While my son has made some amazing strides in the ability to express himself verbally, his autism makes it challenging for him to describe the depth of what or how he’s feeling. Even just initiating communication in general has been, and continues to be, an uphill climb. Considering that, I guess I’m lucky he was able to tell me about his tummy ache that day in the first place. But as usual, my tendency to torture myself with the clarity of 20/20 hindsight rears its ugly head: I should have taken a moment to pause and observe him more closely and perhaps then I would have picked up on the fact it was more than just him needing to use the bathroom. Shoulda, coulda, woulda. In the midst of the morning rush to get to school, I took him at his (limited) word.

Before I beat myself up too much, I must remember these moments of guilt and frustration serve as my reality checks. They do not define the bigger picture. As much as I’d like to, I will never — nor will any parent — be some kind of all-knowing, mind-reading superhero. When it comes right down to it, we’re all winging it as best we can, special needs parent or not. We will inevitably make mistakes along the way. That’s just life.

                                                                                                      

The fact of the matter is, while the nuances of verbal communication remain elusive, my son is improving. His progress from a completely nonverbal 3-year-old to where he is now still utterly boggles my mind. Slowly but surely, he’s gaining skills and coping techniques to help navigate a world, which often makes little sense to him.

When you’re the parent of a child with autism, it’s so very easy to put this tremendous pressure on yourself to be some kind of caregiver extraordinaire. We transform into these hyper-vigilant mama and papa bears who become incredibly hard on ourselves, even in the face of an honest snafu. But — and believe me, I know this is easier said than done — we must resolve to take a step back and give ourselves permission to be human. It’s OK to take a breath, it’s OK to not be able to think 1,000 steps ahead to avoid the unavoidable, it’s OK to be wrong sometimes. It’s also overwhelming and stressful but not insurmountable.

So until the my son reaches a point of being able to elaborate on his own, I’ll listen to what he says but also pause and remind myself to look — really look — at him for some inkling of any deeper meaning that might be bubbling just below the surface. However, on the flip side, often there are no hidden details to what he’s telling me. And somewhere in the middle lies my challenge to discern the difference. In the meantime, I’ll try and forgive myself for the mistakes I know I’ll make.

And when I have remembered to take that step back and breathe a moment, I’m struck by the larger perspective that keeps me ultimately grounded. Even with the challenges my son and I encounter as we navigate these uncharted waters, there is not a day that goes by I’m not truly thankful he is in my life — autism and all. That’s what matters. That’s my reality check. And so it goes.

 

By Erin Kirschner

 

www.themighty.com

 

Present Level of Education

Understanding Sensory Processing Disorder

Understanding Sensory Processing Disorder

7 Ways To Bring Self-Advocacy To Your Next IEP

It’s IEP season. Will your child attend the meeting?
According to the Individuals with Disabilities Education Act (IDEA 2004), , children are permitted to attend their own IEPs, “whenever appropriate.”  The State Department of Education in Kansas requires a student to be invited to his or her IEP at age 14 or younger if postsecondary goals or transition services will be discussed.  But much younger students can also benefit greatly from being a part of the IEP process.  An increasing number of school districts invite students to make a self-advocacy statement or presentation starting in fourth or fifth grade.
How does that work when the student does not comprehend language well?  Or when the student is non-verbal?  How can sensitive topics be discussed without upsetting the student?  The truth is that these situations are when self-advocacy is needed the most!
Isn’t Self-Advocacy out of the reach of most students?
Self-advocacy, especially at an IEP, seems out of reach for many students.  How does a person get to the point where it becomes a reality?  I know that it took my son several years before he understood what his IEP is and why his opinions are important.  I found it necessary to introduce these ideas early and repeat them often so that he would be prepared for transitions to middle school, high school and – in the future – adulthood.  These are some steps that you can take to prepare your child to become a self-advocate, beginning with his or her IEP.

1. Practice “I” statements

Advocating for oneself means explaining wants, needs, likes and dislikes.  The first time my son made a self-advocacy statement at his IEP, it was a simple fill-in-the-blank worksheet with statements such as:

• My name is _____.
• I like _____.
• I don’t like _____.
• At school, I need _____.
• At school, I don’t want _____.
• At home, I want _____.
• At home, I don’t want _____.

Augmentative and alternative communication (AAC) offers one path to learning how to make these “I” statements.  A speech therapist can assist by helping to teach the student how to say, “I need help,” a difficult concept to express on both cognitive and oral-motor levels for some students.  If your student isn’t ready this year to make a self-advocacy statement at the IEP, then first-person statements can be written into the IEP as speech goals or as social-adaptive goals so that he or she will be ready at next year’s IEP.
Indiana University and the Connecticut Parent Advocacy Center have self-advocacy checklists with enough goals for 10 years’ worth of IEPs.

2. Offer choices

Autism Speaks has compiled a self-advocacy guide based on best practices in the field.  One of those practices is to teach decision-making by offering choices beginning early in life.  For example, “Eggs or cereal for breakfast?”  Over time, these choices turn into a wealth of personal experience that guide future decision-making processes.

3. Ask for help

Asking for help can be difficult for just about everyone with and without disabilities.  But no one is an island, so we all have to ask for help sooner or later – it’s a necessary life skill.  Learning how to request assistance – through sign language, AAC or verbally – can be written into the IEP as a social-adaptive goal, and it’s an important step in self-awareness.

4. Self-disclosure

Does your student know what his or her diagnosis is and how to explain it?  Knowing the right time and place to disclose one’s disability, if at all, is a sensitive topic among adults with disabilities.  Self-disclosure is necessary at the doctor’s office and in crisis situations.  A medical alert bracelet or necklace can be worn discreetly and shown to community helpers on an as-needed basis.  A few individuals give out business cards that explain their special needs.  My son has learned that he is more likely to receive assistance from peers when he self-discloses during recess or transitions at school.

5. Person-Centered Planning

Person-Centered Planning is a set of processes that helps a person determine his or her desired outcomes in life and to put supports in place so that those outcomes can be achieved.  For example, the focus person chooses supportive individuals who can be members of his or her team, and the team works together to identify obstacles and opportunities to help reach the goals of the focus person.  Person-Centered Planning is already used in some school districts as early as first grade to create and achieve social-adaptive goals.

6. Practice self-reflection

Reflection and self-analysis are complex cognitive activities that can be modeled for years before they are actually put into practice.  Share your thoughts with your student as you ask and answer these questions for yourself:

• What would happen if….?
• How did you feel when….?
• Next time I would like to…

7. Keep trying!

If it didn’t work out today, don’t give up!  Self-advocacy is a lifelong project that moves slowly at first and gradually builds up momentum over time.
All through his elementary years, my son could not find the words to express his feelings and wishes.  Then one day he told his speech therapist that he didn’t like it when she pulled him out of math class – so she returned him to class.  From there his interest in self-advocacy snowballed, and last month he was named Student of the Month in middle school for his communication skills: he checks in with teachers at the beginning of every class, takes notes, and follows up with questions via email.  And he has already submitted his annual self-advocacy presentation to the IEP team.

Written on 2015/03/25 by:

Karen Wang

Why I Created a Vision Statement for my Child with Special Needs

I’m a sales guy, a commercial real estate broker in the Detroit market, which means I do a lot of prospecting and spend a lot of time working on my business planning. Every year I spend the few weeks before the New Years focusing on what goals and aspirations I have for the coming year. These are goals relevant to business, family, health and other aspects of my life.

This year in December I had a few extra days to do my business planning, and I really took advantage of it. One conversation I had with my 5-year-old daughter, Na’amah, was about her own goal setting. She is ridiculously smart, she’s beautiful, and she’s funny. I like to call her my Hat-trick .
We were talking about what she wants to do when she grows up, and while she was contemplating her answer, I told her “You can be anything you set your mind to, but your options are 1) President of the United States 2) an astronaut or 3) a brain surgeon–anything less would be a waste of your talents.”

The Vision Statement

I also had a conversation with my wife about my younger daughter Ellah, who is 4 and has a rare brain disorder called Agenesis of the Corpus Callosum. You can read more about ACC here. We were talking about our hopes for her as she gets older based on what we had learned at the end of the NODCC conference last summer. Together we came up with a vision statement for Ellah that we now work hard to deliver for Ellah:
We work to ensure that Ellah has every opportunity to learn and grow, so that she can have good communication skills with the people around her, meaningful relationships with people in her life, and feel satisfied in her life.
Occasionally I feel ridiculous having that mantra, it sometimes feels “too foofy” for a “guy like me” but I think about Napoleon Hill, and his book Think and Grow Rich. His own son was deaf, and through his intentions he was able to attract the people into his life who could help his son hear. That’s really all I want for Ellah. Just to give her every opportunity to have good communication skills, meaningful relationships, and feel fulfilled.

A Vision For Our Family

At some point during my goal setting process this year, I realized that while money is important, and business success is important, and the health goals and the hobbies are all important things, they shouldn’t be the main focus of my attention.  No, the vision that we have for Ellah is not only important for her, but for all of us. In the end, I don’t care if Na’amah is not a brain surgeon or an Astronaut, like Ellah, most important to me is that she has good communication skills, meaningful relationships, and is feeling fulfilled in her life.  In trying to support Ellah, we realized that our vision for her should be what we envision for ourselves as a family. Thanks, Ellah, for teaching me an important life lesson!

By: Benji Rosenzweig via Friendship Circle

Is Constraint Induced Therapy Right for Your Child?

 

Is Constraint Induced Therapy Right for Your Child?

By Lee Vander Loop
CP Family Network Editor
You may have heard the term Constraint Induced Therapy (CIT) in a special-needs moms’ circle or during a therapy session with your child. Perhaps you’ve heard of its potential benefits in recent news stories. How much do you really know about CIT, and how do you determine if it’s right for your child?

Constraint Induced Therapy Defined

Pediatric Constraint Induced Movement Therapy or CIT is a type of treatment that teaches the brain to “rewire” itself following a brain injury. The focus is to restrict a child’s good extremity (arm, hand, leg, etc.) in order to force usage and improved function of the extremity needing rehabilitation. CIT often involves intensive training of the more-impaired extremity for a certain number of hours per day for a designated period of time. Children with a more severe level of spasticity or mobility impairment may require more daily hours of constraint and a longer period of intense therapy.
The CI Research Institute states that Constraint Induced Movement Therapy is the only rehabilitation technique shown to markedly change the organization of activity in the brain. Various studies have shown favorable outcomes suggesting that CIT may be a useful tool in the treatment of upper-extremity dysfunction in hemiplegic CP and other forms of CP.
Depending on the specific goals and level of achievement, it may take multiple sessions to realize the intended benefit.  Remember, you’re re-training the brain!!! Be patient.

Is Your Child a Candidate?

CIT is not appropriate for every child with cerebral palsy. Talk with your pediatrician, therapists and orthopaedic specialist to discuss whether or not your child could achieve positive results from Constraint Induced Movement Therapy.
Your child will need to be monitored throughout the course of treatment to check for any complications. Discuss with your therapist what “trouble signs” you need to look for, such as chafing, rash or skin breakdown with the restrained limb. Check fingers and toes to make sure there’s no impediment of blood flow as a result of a cast or restraining device that is too tight.

Goals

Your therapist should have a Care Plan mapped out, detailing the specifics of your child’s therapy plan, including hours per day, additional therapies being implemented and the overall duration of the CIT sessions. Request a copy of the Plan. You may want to create a chart or journal tracking and annotating your child’s daily sessions. Detail the length of time the constraint device is used and what skills your childed work on during the session.  Make notes of improvement and struggles.  This will give the therapist a better picture of your child’s progress or need for additional assistance.

Coping Mechanisms

What is CIT like for a child? Here’s an analogy. If you’re right-handed, imagine someone casting that hand, forcing you to do everything with your left! Keep in mind, you probably have normal abilities and range of motion in your left hand. What if you didn’t? What if you had no good function in your left hand and now your right hand is immobilized! While adults you have the maturity and psychological skills to cope with frustration, many children do not. Couple that with a child’s immaturity and possibly an inability to communicate and you can imagine the reaction your child may have to this type of therapy.
There will be tears! Ask your therapist how to help your child establish coping mechanisms and ways to help your child get past the frustration. Make it fun! Incorporate play therapy in your CIT sessions! You want these sessions to be productive and fun, not a screaming match between you and your child. For children with developmental disability and cognitive delay, discuss with the therapist the best ways to introduce this therapy to your child.
For children with the cognitive skills to understand, have your therapist help you explain to your child the concept and goals of the therapy. Explain the number of hours per day the constraint session will last and try to set a schedule that everyone can agree with. Be sure to consider whether or not any of the constraint hours will overlap hours your child is in school. You may want to start out small and work up. Also try to schedule hours when you can play an active roll in your child’s session. Pediatric therapy based on stringency is unrealistic. You need to be consistent but flexible. There may be days when your child just isn’t being cooperative, and you find yourself skipping an hour here or a day there. Discuss with your therapist some ideas that will give you flexibility for the unexpected.

Conclusion

As with any new therapy, consult your child’s doctors and care providers before embarking on a treatment plan. Do your research and weigh the benefits and risks before deciding whether or not Constraint Induced Therapy is right for your child.

25 Great Toys for Kids Who Don't Play With Toys

Does your child play with toys?  If so, this article isn’t for you. You should probably Google “hottest toys of 2012.”

• Is your child scared of blinking, beeping toys?
• Is your child unable to understand the rules of most games?
• Does your child lack interest in typical toys?
• Is your child delayed when it comes to basic play skills?

If the answer to any of these questions is yes, then keep reading.
All human beings learn through play.  A delay in play skills means a delay in other skills.  Toys are not necessary for play, of course.  All that’s needed are two people interacting in a fun way.  But children’s toys can be useful for engaging the attention of a child with special needs, and even more useful for expanding circles of communication and teaching other developmental skills along the way.
If you’re looking for gifts for a child who doesn’t play with toys, then here’s a list of what’s been most successful with my son and his buddies over the years.

Everyday items

1. Flashlight

My son was frightened by toys with blinking lights when he was little, but he has always enjoyed playing with flashlights.  Turning the flashlight on and off exercises fine motor skills, and provides an opportunity to practice simple words like “on” and “off.”  It also helped my son overcome his phobia of bright lights. The Mini Maglite is the right size for little hands, and it has a blink mode if you need to work on desensitizing to blinking lights.

2. Shark Sweeper

I know a few kids who don’t like toys, but they love vacuums.  The Shark Cordless Sweeper  is motorized but much quieter than a typical vacuum, plus it’s light and easy to maneuver.  There’s a clear plastic cover in front of the bristles, so curious kids can watch it spinning.  We had many hours of fun with this sweeper, and it sure got some good conversations started.  Plus our carpets were super clean.

3. Handheld Massager

Occupational therapists often recommend vibrating toys for children with special needs, and the Ribbit massager by Homedics is great for all ages.

4. Real Tools

Play often starts with imitating adult activities.  A set of garden tools with garden gloves or a real tool kit with a small hammer, screwdriver and file, along with a wood board, are a good way to teach a child to slow down and focus on fine motor activities.  Of course, adult supervision is required at all times with these tools.

A Big Box of Cool Stuff

5. Raw materials

Let’s face it – most kids would rather play with a box than the toy that came inside it anyway. Collect your empty oatmeal canisters, cereal boxes and paper towel tubes.  Help your child tape the pieces together and create something new out of cardboard and Styrofoam.  Here’s a video that shows what happened when a teacher got rid of all of the toys in his classroom and replaced them with raw materials.

6. Box of toiletries

Since kids like to imitate their parents, collect some safe toiletries and allow some messy sensory play in the bathroom: scented lotion, aloe vera gel, baby powder, bandages and gauze, a bar of soap, shaving cream and an old towel to wipe it up when playtime is finished.

7. Box of office supplies

One year, my sister-in-law gave my older son a box of office supplies, all with the logo of his favorite office store.  It took more than a year for him to work through the index cards, tape, pencils, highlighters, sticky notes, a ruler and much, much more.

Sensory Play

8. Disco Ball

Anyone who has visited the Friendship Circle’s Snoezelen knows that the lights and disco balls can be relaxing and entertaining for kids with special needs.  So a small, rotating, multi-color disco ball is a fun addition to the sensory environment at home.

9. Body Sox

A body sock is made of stretchy fabric and has an opening so that a person can step inside. Its purpose is to encourage body awareness and creative movement. For my family, it has been successful on both counts.

10. Exercise Machine

If I had a nickel for every time I had to drag my children away from the exercise machines at the rec center, I’d be able to buy my own elliptical trainer.  A mini-trampoline, child-size treadmill or air walker can get a child’s attention while working toward physical therapy goals.

11. Musical wand

My son had a phobia of bells when he was a toddler, so toys like the musical wand helped him explore metallic sounds while feeling safe and secure in my arms.  The musical wand can be a tool for pretend play as well, especially when paired with a book like “Alice the Fairy” by David Shannon.

12. Punching bag

Instead of trying to stop aggressive behavior cold turkey, which is usually impossible anyway, a punching bag  redirects the aggression in an appropriate manner.

13. IKEA egg seat

This egg-shaped seat was designed for vestibular and proprioceptive sensory needs, plus it’s perfect for playing peek-a-boo.

14. Stomp Rocket

The Stomp Rocket helps work out aggressive energy while teaching a simple science lesson.  My kids never get tired of it.  Sometimes they make their own paper rockets, too.

15. Kazoo

The box said, “If you can hum, you can kazoo.”  So I bought it for $2.  It opens the door to oral-motor skills.

16. Bean bag toss

I have a child who has the urge to throw things ALL THE TIME.  Most toys are not safe for him because of this.  I decided that he may as well improve his aim if he’s going to throw things, and a bean bag toss is safer than a baseball at this point.  The bean bag target can be varied – for example, he can throw the bean bags at cards with sight words or letters of the alphabet.

Attention-grabbing quiet toys

17. Marble run

I’ve never met a kid who didn’t love a marble run.  These toys help with visual tracking, and the best part is the building process with kids.  But they’re not safe for any child who puts toys in his or her mouth.

18. Folk toys

I remember playing with traditional wooden folk toys at my grandparents’ house when I was little.  When I was brainstorming to find toys that would get my son’s attention, I went back to my roots.  Toys like the Jacob’s Ladder and Falling Boy  engaged my son and really made him think about how they work.

19. Magformers

The magnets in this building set are encased in plastic, so there are no small pieces.  The set encourages open-ended play, and it’s a good way to explore the sensory features of magnets.  It’s one of the “quiet toys” that travels with us.

20. Magnetic gyro wheel

Kids can’t take their eyes off this toy, and it’s great for long road trips or kids who just want to watch something spin.

21. Whoopee cushion

Yes, it’s crude and vulgar.  It’s also a quick way to get a speech-delayed kid to talk.  You’ll probably get quite a bit of eye contact, too.  At $1.75, it’s a lot less expensive than an hour of speech therapy!

22. Globe

If your child loves to spin things, get a globe.   It will help with pre-literacy skills and open up new conversations about the world.

23. Hoberman sphere

I used the Hoberman sphere to teach my son the names for the colors and some simple opposite terms like “big” and “small,” “in” and “out.”  It can be hung from the ceiling as a mobile that expands and contracts, but my kids prefer to hold it on the ground.

Introducing Pretend Play

24. Play silks or old scarves

Even children who don’t want to play dress-up like the texture of scarves and play silks.  These are a good way to introduce open-ended play to kids who prefer to stick with a script.

25. Box of hats

Over the years I’ve collected all sorts of hats  for my kids.  Trying on different identities is the first step to pretend play.


By Karen Wang from Friendship Circle

The Importance of Special Needs Planning

The Importance of Special Needs Planning
Caring for an individual with special needs takes special planning. All too often we put off the task of planning as it can be overwhelming. The thought is often daunting as it is difficult to begin what can be an involved, complicated process that takes a lot of time and energy. This article will outline some of the necessary steps you, with the assistance of a qualified attorney and other professionals, need to take to plan appropriately and thoroughly and will identify some pitfalls in the Special Needs Planning Process.
Letter of Intent
Putting together one's plans for the future of a child or dependent with special needs can be a daunting task laden with emotions. One way to get started is to compose a Letter of Intent. While the Letter of Intent is not a legal document, it is designed to serve as a roadmap for anyone involved with your child's situation to utilize in understanding your child, their needs and your wishes for your child when you are no longer able to carry them out yourself. This letter should detail medical history, daily care needs, activities, housing,and services as well as your specific wishes as it relates to your child's future. This document is a working document for your future caregiver to follow.
Your Will
Addressing legal issues is a crucial step in planning for the future. Creating and planning your estate is vital to meeting your child's lifetime needs. Prepare a will if you do not already have one. Update your will if you already have one in place. Make sure that it reflects exactly what you want for your child. A will declares how you want your estate to be distributed and also allows you to select a guardian for your child when you die. It may be especially important if you want to prevent or limit distributions directly to a child with Special Needs. Without a will the governing state will determine the distribution of assets and guardianship.

Special Needs Trusts
Many well intentioned parents don't realize that an inheritance may cause many problems for their child. Under current federal law, any inheritance of more than $2000 disqualifies individuals with diabilities from most federal needs based assistance. Benefits from state public assistance programs may also be affected. A Special Needs Trust, however offers a means of protecting your child's eligibility for these benefits, while addressing the ongoing care and needs of your child or family member with special needs. Design a special needs trust of update your old one. Be sure to include the individual or other key family members in the planing process when appropriate.
Guardian/Trustee
Select a guardian to take your place. Make sure you explain to this individual exactly what is involved. Be sure to give specifics to in an effort to make clear what the individual is taking on and what their role and responsibilities will be. Make sure that they want the job. Choosing the wrong people can be devastating for everyone involved. You may want to consider having a guardian, a trustee, and a trust protector. All three would have different roles in managing your child, the money and investments yet all involved and all contributing to the overall well being of your child. The important thing is to explore the options and identify what is right for your an your unique situation. There isn't a standard set up that is right for everyone.
Please be sure to avoid the following critical mistakes with Special Needs Planning

• Disinheriting your child- You do have options. Often times individuals think that the only way they can protect their child's right to government benefits is to leave them nothing or not name them in their will. This action could possibly leave what happens to your child up to the state admistrators. These people don't understand the unique needs of your dependent. Chances are this is not what you want!
• Procrastinating-Tomorrow will come and will seem much faster if you are not prepared.
• Relying on your children to take care of their sibling. Put it in writing. Spell it all out in a Special Needs Trust accompanied by a Letter of Intent.
• Choosing the wrong Trustee. Choose carefully and communicate your decision, your wishes, hopes and dreams for your dependent.
• Poorly drafted Trust documents. Be sure to work with qualified professionals.
• Failure to properly fund the trust. An unfunded or underfunded trust will not do anyone any good.

When doing your planning, please keep the following items in mind:

• Observe the $2000 Federal Limit
• Have a special needs trust drafted or update your old one
• Select a Guardian/Trustee to take your place
• Process Guardianship/Power of Attorney/Health Care Proxy papers for an individual who can not make any of these decisions for themselves
• Include the individual with special needs in the process whenever appropriate
• Prepare a Will if you do not already have one
• Create a Letter of Intent
• Update your documents. Make sure they reflect your current scenario and are valid in you present state of domicile
• Review all documents with the person/persons named as Guardian/Trustee. Make sure that they want to take on this role and understand the responsibilitiy.
• Work with qualified, experienced professionals. No short cuts. Everyone in the planning process needs to understand your family dynamics and your family member with special needs.
• Team Work! Create your team of advisors. Always remember that it takes a whole village to raise a child.
• Start Planning It's never too late or too early to start planning, it's the getting started that counts!

Thank you to Consolidated Planning Group for these important tips and for hosting our January gathering.