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Giving Thanks

Posted on March 15, 2015 at 9:20 PM Comments comments (0)

The hustle and bustle of the holiday season has commenced. As I type at my mother’s kitchen table, I pause for a moment to witness the flurry of activity in the kitchen. My children whisk the eggs while my mother measures the flour, and my grandmother’s caregiver chops the nuts, all while the matriarch of the family looks on, ready to offer her suggestions. While observing the controlled chaos, my heart overflows with thanks and gratitude. I feel thankful that four generations are under one roof and we are all relatively healthy. I feel thankful that my grandmother has wonderful caregivers who have quickly become part of our family. I feel thankful that we will be celebrating another holiday season together.

 

It is equally important to remember those who do so much for my son, from the teacher who gives him special jobs when he is having a rough morning to the speech pathologist who calls me after hours to find out how the team meeting went and everyone in between. Usually, a simple thank you or a hand-written note is sufficient to show your appreciation, not just during the holidays but throughout the year. The teachers and specialists work all year round to make my life easier, to give me peace of mind, to answer my endless questions and most importantly, to provide treatment and services for my child. We may not always agree and we may have some difficult exchanges, but always with a modicum of respect and with one shared goal: to secure the best possible outcome for my son.


So, here’s to the doctors, nurses, therapists, teachers, and aides who work so diligently on behalf of children with special needs and who are too often underappreciated. On behalf of families with children with special needs, we thank you and remember you in our hearts this Thanksgiving and next.

 

Keep Your Cool

Posted on March 15, 2015 at 9:05 PM Comments comments (0)

Keep your cool. Don't let your emotions get the better of you. Be prepared. Be assertive, but not forceful. These are just a few "rules" we as parents must remember when we participate in team meetings. What are the other commandments and what if we break one of the cardinal sins of team meeting decorum?

 

My top five do's for parents:

1. Be prepared. Review the IEP and progress reports. Have your list of questions ready. If you are bringing an independent evaluation for consideration, make sure the team has received it and had time to review it prior to the meeting.

2. Always bring someone with you (an advocate, relative, or friend) to a team meeting. The mere presence of your support person will provide you with a sense of comfort. Have your support person take notes for you. It will lessen the pressure of trying to listen to every word while attempting to write everything down.

3. If you are beginning to feel that you are headed towards your boiling point, have a sip of water or request a moment to collect yourself. Taking a short break before you lose control of your emotions will allow the team to re-focus and ultimately keep the process moving in the right direction.

4. Ask questions if you need clarification. It’s okay to say, “I don’t understand. Please explain again.”

5. Request a copy of the meeting notes and ask when you can expect to receive the IEP. Do not sign the IEP at the meeting. You will need time to debrief and review the IEP.

 

Above all, remember that you are only human. Don’t beat yourself up if you become upset or forget something. You have rights. You are your child’s expert. Be informed and you will be an integral member of your child’s team.

 

 

Never Judge a Book by its Cover

Posted on March 15, 2015 at 9:00 PM Comments comments (0)

Recently, a friend had the following post on her Facebook status: “To all those dealing with "invisible illness"... It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Feel free to post this as your status for at least one hour if you or someone you know has an invisible illness (cancer, diabetes, ADHD, crohns, depression, anxiety, etc.). Never judge what you don't understand.”


Too often in our society, we judge. The mother who lets her child repeatedly run in circles in the store is incapable of disciplining her child. We don’t know that he has autism. The young adult who won’t shake your hand upon meeting you is rude. You don’t know that she has obsessive-compulsive disorder. The little boy who looks away from you when you say, “Hello”, has poor manners. His parents must be the same way. You don’t know that he has an anxiety disorder.


Many of us are guilty of passing judgment on situations of which we possess no understanding let alone background knowledge. While I could speculate as to why we are so quick to criticize not only perfect strangers, but also those who we care about, I won’t. I am not a therapist, nor is that my purpose. My intention is solely to give a voice to those who struggle on a daily basis, yet do so with as much dignity and resolve as possible. To those who believe they are judge and jury: Please think before you roll your eyes or make a snide comment within earshot. Parents struggle every day and for most of us, those struggles will diminish. Parents with children with special needs experience a heightened sense of struggle every day. The tribulation will likely endure and each time you pass judgment, you feed the insatiable fire. You may never see that mother again or the young adult, but they will remember how you treated them.


In the words of Mark Twain, “Kindness is the language which the deaf can hear and the blind can see.”

 

Out of This World

Posted on March 15, 2015 at 9:00 PM Comments comments (0)

Typically, when someone says that something is “out of this world”, they mean that it’s a good thing. However, when those words come from your child and he says that sometimes he feels like he is out of this world, that phrase takes on a whole new meaning. When my six-year-old stated how his “body sometimes makes him feel sick like he’s not in this world,” it took all of my resolve to force that lump back in my throat and smile at him. My husband explained to him that we understand and for that reason he takes medication, to help him stay in our world.


After tossing and turning for half the night, probably because I couldn’t erase my boy’s sweet voice playing that message over and over again, I wondered if we really do understand. The short answer is No, we don’t. We can read and research our children’s conditions until we have exhausted all resources, but until we can actually experience what they go through, we have no idea. That led me to another thought: is there a way to simulate a seizure? If there is, then everyone who works with my child should endure that experience. While that may sound extreme, it would be in my son’s best interest. All of us who teach him and care for him should have first-hand knowledge of how it feels when he is “not in this world.” This knowledge would lead to a clearer understanding of his needs and increased empathy during the time he is checked out and in recovery. Unfortunately, I was unsuccessful in my search, but it is on my list of questions for my next conversation with the neurologist. While I realize that this idea is far-fetched, I remain hopeful that it will happen one day. Stranger things have happened, right?


As the summer winds down and we prepare for another school year, remember to update your child’s health care plan and review those IEP’s. Enjoy the last days of summer!

 

School's Out for Summer!

Posted on March 15, 2015 at 9:00 PM Comments comments (0)

As we near the end of the school year and our minds turn to swimming lessons and summer camps, don’t let it escape you that now is as important as ever to maintain a positive relationship with your child’s team. Doing so will help to ensure a smooth transition for all in the upcoming school year. For many parents, it’s been a long year and we’re ready to have some down time, but our school work is not over yet. Utilize these tips and you will not only end the school year on a positive note, you will also begin the new school year on the right foot with your child’s team.

1. Reconvene the team several weeks prior to the end of school. The purpose of this meeting should be to update progress, determine if the student is eligible for summer services, and develop a transition plan for the fall. The transition plan should include, but not be limited to, steps for introducing the student to his new teacher and classroom, a meeting time for the current teacher and receiving teacher, as well as a meeting time for the parents and receiving teacher.

2. Continue to volunteer and participate in school and PTO activities. Your presence demonstrates your willingness to be a team player until the last bell.

3. Send a note of appreciation to the teacher for all she has done to help your child have a successful year (even if you feel otherwise). Similarly, send a note to the receiving teacher letting her know that you are looking forward to working with her in the coming year. It’s a small gesture but one that will go a long way.

Each of these tips will benefit you, your child’s team, and most importantly, your child. Get your school work done and then get out in the sun!

 

Reach for the Stars

Posted on March 15, 2015 at 9:00 PM Comments comments (0)

The theme this year at my children’s school is Space: Reach for the Stars. Several activities are planned around this theme and the students are encouraged to not only learn about the moon and planets but to reach for the stars and stretch their minds and imaginations. I have been occupied the last several months with striving to attain the necessary services for my son as well as helping other parents do the same for their children with special needs. In other words, I have been reaching for the stars and stretching my imagination in an effort to help my child reach his star.

 

Working to acquire special education services for one’s child while trying to maintain a positive relationship with the school staff can prove challenging. Your primary objective is to secure the best possible services for your child and you feel that the school should share your vision. While that may be, they also have staffing and time constraints to deal with, not to mention budgeting issues. As a result, you may believe that they aren’t thinking about what is best for your child, but rather, how many dollar signs is this therapy going to take. At this point, communication and collaboration break down, thus resulting in posturing, finger pointing and trying to save face. More importantly, the child is likely not receiving the services and supports he needs and the process drags on until one side gives in or a hearing officer ultimately makes the decision. Either way, the relationship is damaged, but it doesn’t have to be that way.

 

President Obama preaches bipartisanship and crossing the aisle. Maybe we, as parents and special education staff, need to cross the conference table and work as a team with a shared goal instead of individuals with personal agendas. If democrats and republicans can do it, then surely we can too. So, let’s reach for the stars and collaboratively create solutions that will enable the best support for our children with special needs. Then they can reach for their stars.

 

Happy 20th Anniverary, ADA

Posted on March 15, 2015 at 8:35 PM Comments comments (0)

This past July marked the 20th anniversary of the Americans with Disabilities Act (ADA). The law held great promise for individuals with disabilities in that meaningful opportunities for employment and related services would be available. Unfortunately, we as a nation are still behind the times in closing the gaps that differentiate those with disabilities and those without. Research shows that access to gainful employment, health care, and social opportunities remains ineffectual. Americans with disabilities continue to struggle to attain a quality of life that we sometimes take for granted. We, as Americans and as moms, have our work cut out for us.

 

During his campaign, President Obama outlined his https://www.whitehouse.gov/omb/factsheet/expanding-opportunities-for-people-with-disabilities" target="_blank">agenda for individuals with disabilities, citing it as a priority. According to the Council for Exceptional Children, the president is making good on his promise, including but not limited to, having signed the Christopher and Dana Reeve Paralysis Act and the State Children’s Health Insurance Program as well providing funding for IDEA and for vocational training centers.

 

While President Obama’s initiatives will likely improve the quality of life for many Americans with disabilities, it is also our responsibility to be proactive, not only for our fellow Americans with disabilities but for our children as well. We must act now to reach out to people with disabilities, encourage our children to have a play date with a child with special needs, provide employment opportunities, and participate in community events aimed at supporting individuals with disabilities. It is time to open our hearts and our minds. Author and disability advocate, Joni Eareckson Tada, states “to have real social change, we must have heart change.” Then and only then, our lives, our children’s lives, and the lives of people with disabilities will be fuller and richer.

 

 

I am Woman, Hear Me Roar!

Posted on March 15, 2015 at 8:30 PM Comments comments (0)

We’re in the middle of summer break and next week I need to order my kids’ school supplies. I remember going to Staples or Office Max (if one or the other was sold out of the blue denim binder or perfect pencil case) two days before school opened. Nowadays, schools send home a list of supplies to be purchased online. Your child’s bundle will be delivered to his classroom for the first day of school if you order by a specific date. As I was making a note to remember to place my order for paper and markers, I made an additional notation. This note reminds me to check my son’s IEP date and make sure that my copies of his paperwork are in order. This marks my first step in advocating for my son in the upcoming school year.

 

Navigating the twists and turns of the special education department within a public school system can cause a parent to feel like a hamster running in circles in a little cage. I have sat on both sides of the conference room table, as a special educator and as a parent, and unless you speak up and advocate for your child and for yourself, and learn the ins and outs of special education. you will feel the insecurity of that little hamster. When I know of my child’s IEP review date , I organize my paperwork and prepare a list of questions in advance of the meeting.

 

Being prepared for and attending the IEP meeting is just one step in advocating for yourself and your child. Frequent communication with teachers and therapists and participating in school and PTO events are others ways to support your child with special needs. As a teacher, I always found it difficult to meet with parents between classes. As tempting as it may be to catch the teacher or therapist at pick-up, it is a time-saver to drop an email or leave a message with a question or concern. This is more productive as it provides the teacher with more time to respond and give you undivided attention to which you are entitled. Understand your child‘s special needs and keep abreast of current research and practices. I frequently reviewed my students’ IEP’s to check on progress. This is also important for parents to do so as to ensure that goals are up-to-date and are being met.

There are numerous ways to advocate for your child. The bottom line is that you know your child best. Be informed, be involved, and be heard. You have a voice. Let it roar sometimes!

Please visit the following links for additional tips and strategies: http://parentingspecialneeds.org/article&article=336 http://www.mdcoalition.org/advocating.htm#top

 

Bully No More

Posted on March 15, 2015 at 8:30 PM Comments comments (0)

Historically, bullying at school has not been an issue of great concern. The general feeling among parents and teachers was that kids pick on kids and it was a part of growing up. In recent years, however, bullying has taken on a whole new meaning and has become a hot topic at schools, in the media, and on the Hill. Today, bullying is not just picking on someone on the playground or in school. For some kids, it’s 24/7 torture. Unlimited access to the internet and hazing in sports provide the bullies with a huge platform to constantly harass their victims. It has become such a serious issue that lawmakers are pushing for anti-bullying legislation. In fact, anti-bullying laws are in effect in several states.

 

Recently, a young Massachusetts girl was so distraught by the relentless hounding that she took her own life. What does that mean for kids with special needs? Are they easier targets for bullies? As early as last week, there were two separate incidences in which high school students bullied students with special needs. In the first case, a Massachusetts boy and a girl are being charged with harassment for allegedly posting a cruel video of a teen with physical impairments.

The second incident involves four New Hampshire teens who allegedly bullied a fourteen-year-old with learning disabilities into tattooing profanities on his buttocks.

 

Kids with special needs are especially vulnerable. Most kids with special needs are sensitive, quiet, and easy to cajole. They might look or act different. They might not keep up with the current fashion or teen lingo. They might not recognize social cues or know right from wrong. They might cower if feeling threatened and not tell anyone. For all of these reasons, bullies will seek out kids with special needs. As I write this, my mind turns to my sweet and sensitive son. I just want to hold him tight and never let him go. I want to protect him, but keeping him within my reach is not the answer. I need to arm him with the tools and knowledge he needs to protect himself and make a place for himself.

 

The following links are excellent resources for understanding and dealing with this issue. They provide useful strategies for protecting and empowering our kids such as role-play with your child. Show him how to handle a bully and give her specific language to use. Schedule an IEP meeting and implement goals that specifically pertain to bullying at school. Make a list of two or three adults he can go to if he feels threatened. Visit these websites for more information: http://special-needs.families.com/blog/protect-your-special-needs-child-from-bullying and http://fcsn.org/newsline/v30n3/bullying.php.

 

As moms and members of the community, we need to remain vigilant. We need to protect all of our children and intervene on their behalf. If we don’t stand up for them, who will? We need to send a strong message that we will not put up with bullies. Go to your school and community meetings. Arrange for a group of neighborhood children to walk to school together or ride the bus together. There is strength in numbers. We have more than enough bullies on the other side of the world, why do we need to have them in our schools, too?

 

Hope

Posted on March 15, 2015 at 8:30 PM Comments comments (0)

Autism. That one single word can invoke so many feelings and emotions. Chief among them is fear. We are afraid, and rightly so, of autism and the havoc it creates for families. The disorder has been a hot topic in the media, on the playground, and just about anywhere else moms, teachers, doctors, and scientists gather. Perhaps that’s because there has been an alarming increase in the number of cases or maybe it’s because money is being poured into research. Maybe parents are just more comfortable speaking openly about their child’s condition. Whatever the reason, autism is on the forefront of everyone’s mind.

 

My first experience with autism was during my graduate studies. I worked one-on-one with a child with autism for a year. He was a remarkable child and very bright but his behaviors appeared to overshadow his intellect. I always thought of him as a puzzle that I couldn’t solve, but I was hopeful that one day he would be able to compensate for those behaviors and let his intelligence shine.

 

Many years and experiences later, I had children of my own and there was a prevailing fear among parents to vaccinate their kids. Studies indicated that the vaccines that were supposed to protect our children were in fact causing autism. Although this had not been proven, this fear of the unknown prevented many moms from vaccinating their kids. This became a hot debate and two camps were formed. I joined the camp that was pro-vaccination. Although there are no definitive causes, I always believed that autism is a neurological disorder that is caused by abnormalities in the brain. Now those studies linking vaccines to autism have been retracted, but some parents still believe that their children’s autism is the result of a vaccination. While I can’t begin to imagine how it must feel for these moms to have a child with autism, this finding gave me hope that we are one step closer to discovering the root cause of autism.

 

Several weeks ago, I watched a film titled “A Mother’s Courage: Talking Back to Autism.” It follows a mother on her journey to understand autism and to uncover the newest therapies with the dream that she might be able to one day communicate with her son. She returned home armed with information and a renewed sense of hope that these techniques will break down a barrier between her and her son’s autism.

 

Recently, I had a conversation with a mom at school about her son. He has autism and she was explaining to me how her life is all about caring for her son. She learned about a home-schooling program that she has implemented with their caregivers and she has seen progress. She feels hopeful that he will be in a mainstream classroom one day.

 

While autism can be devastating, I think that the overriding theme is hope. Hope that our kids with autism will lead happy and productive lives, hope that our doctors and scientists will discover the origins of autism, and hope that we will eradicate this disorder. In the meantime, we must continue to support the research and programs and each other, and above all, remain hopeful.

 


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