Tag Archives: disability

10 Things Typical Parents should know about Special Needs Parents

10 Things Typical Parents should know about Special Needs Parents

When your child is diagnosed with a disability, it is life changing.  You may already have known something wasn’t quite right before the diagnosis, but receiving that official “label” is life changing.  What we imagined our life to be and what our reality is is quite different.  I have spoken to many parents who have received their child’s diagnosis and although they suspected it, the news was devastating.  Before the “label” we could live in a fantasy world that allowed us to believe that maybe he/she just simply speech delayed.  We convince ourselves that certain behaviors are really just the terrible twos.  When we observe regression, we tell ourselves they weren’t really doing that skill 100% of the time anyway.  The diagnosis makes it real.

Over the years, I have heard many well-meaning comments from typical parents: “Oh, you should try using time-out.”  Um, doesn’t work.  “I saw online that there is a holistic doctor that does chelation that cures autism.”  Tried it.  She’s still autistic.  “My brother’s co-worker’s cousin has a son with autism.  You should totally talk to them!”  Um, no thanks.

I don’t think people say things to be hurtful; they simply just don’t know.  Unless you have a child with a disability, it is very difficult to understand.  Here are 10 things you should know about parenting a child of special needs.  Image result for special needs parent meme

10 Things Typical Parents should know about Special Needs Parents

  1. We do not want your pity. When your friend shares their experience of parenting their child with special needs they are not looking for you to feel sorry for them. They are also not looking for you to solve their problem.  They are looking for a friend.  Someone who can say, “Wow that sounds like a rough day!  Anything I can do to help?”  This is no different than when you share that your son broke his arm.  Do you expect your friend to feel sorry for you?
  2. We get more advice than you can possibly imagine; we likely do not need your advice. Many well meaning friends want to share how their neighbor’s nephew’s neighbor has the same disability and they saw Dr. X and he is now cured. Most parents of special needs kids are very well informed about their child’s disability.  They stay up all hours of the night researching new therapies and studies.  They are likely well aware of any therapy that claims to “cure” their child’s issues.
  3. We worry all the time. The difference biggest difference between parenting a typical child vs. parenting a special needs child is that you never stop parenting your special needs child. Our kids will likely need some degree parental support throughout their lifetime.  Our biggest worry is, “Who will care for my child after I am gone?”  This is a constant worry and does not go away.  They also worry about inclusion, education, socialization, etc.  The worry list is LONG.
  4. We celebrate our child’s accomplishments no matter how big or small they may be. Many of have been so scared to believe in our child’s potential and when our children do reach huge milestones, we want to celebrate BIG.  We might throw amazing birthday parties for our medically fragile kids just to celebrate the fact that there are on this earth for another year.
  5. We are not Superman or Superwoman. PLEASE do not say we are amazing and you could never do what we do.  I assure you, if your child was diagnosed with a disability, you would move heaven and earth to help your child reach their potential.  We are like any other parent; our kids are the ones that are amazing superheroes!
  6. We are more educated about our child’s disability or issues than any doctor, teacher or therapist. We spend hours on the internet researching. We join support groups to learn from other parents of special needs kids.
  7. We sometimes find it difficult to sympathize with other parent’s concerns about their typical healthy children. I have heard many people comment how most of my friends are parents of special needs kids.  It is not because we all got together and decided to form a clique; it is because we get it.
  8. We over plan for every scenario. We create a plan A, B & C with the option to throw in the towel and go home at any time. This is especially challenging for parents of children with mobility issues.  They have to make sure every area of every place they take their child will be accessible and accommodate their needs.  So when you think your friend doesn’t want to socialize or has become a bit of a hermit, it is usually because planning to leave is so much harder than staying home and watching Netflix!
  9. We feel guilty. We constantly second guess ourselves. We feel guilt over that one therapy or medication we chose not to try.  We feel guilty that our typical children have to deal with issues that most of their peers will never have to learn about.  We feel guilty that our spouses feel neglected.  We feel guilty that cleaning the house is the lowest priority.
  10. We are mama and papa bears that will go to the ends of the earth to protect our children.  We will fight for inclusion.  We will advocate for our children’s needs.  We will raise awareness about our child’s disability.

One very important piece of advice, please do not use the r-word.  This word alone cuts us to the core.  Many people say, “It’s only a word.”  Well, this one word is offensive to anyone in the disability community.  So offensive, that it has been removed from diagnostic criteria.  What used to be referred to as “mental retardation” is now “intellectually disabled”.  For more information on the campaign to Spread the Word to End the Word, please visit www.r-word.org .

Special Needs Parent

If you have anything to add, please comment below!

IEP, 504, ETR – OH MY!

IEP, 504, ETR – OH MY!

In 2001 when we first learned that Katie had autism, I was anything but an advocate.  What I knew about autism was ignorantly based on the movie Rainman.  After receiving the diagnosis, we were warned off going on the internet.  Unfortunately, that was the first thing I did.  I had no idea how to weed through what I was reading to find what I needed to know.

When Katie was evaluated by our public school’s early intervention preschool, I was surprised at how clinical and direct the psychiatrist and those evaluating our daughter were.  It all was so harsh and frightening.  I would go to these meetings alone.  There would be a school psychiatrist, speech therapist, occupational therapist, administrator, classroom teacher and me.  The meetings always felt very “one-sided” and I didn’t understand how to advocate for Katie.  In later years, I began making sure meetings were scheduled so that my husband could attend.  I also brought a friend that was a  special education teachers in another district and another friend that was a social worker.  I asked everyone to use their voice during the meeting!  This definitely changed the dynamic and made the meeting more “balanced”.

IEP meeting

It is my belief that most teachers and therapists have an invested interest in our children and do care about them.  The problem is that when an administrator is in the room and a teacher is aware of constant “budget rumblings” within a district, a teacher will be hesitant to advocate for a therapy or service that will cost the district additional funds.  The administrators job in the meeting is to make sure that all follow the law, but, I believe, they are always thinking about the bottom line.

Because of the number of people the school has in the meeting, a parent can easily feel intimidated and less willing to strongly advocate for their child simply because they are outnumbered and intimidated.

Here are some strategies that I have used over the years to help keep the meeting centered on Katie’s needs and how to best help her reach her potential.communicate

  1. Communication.  When you receive your invitation to attend a 504 planning,  Individualized Education Plan (IEP) or Evaluation Team Report (ETR) meeting, respond to your case manager and ask to discuss your child’s needs BEFORE the meeting.  If you have areas of concern, it is best to get them out on the table as the planning for the meeting takes place.  Work directly with your child’s case manager to discuss possible goals and objectives that might work for your child.  There are also plenty of websites out there that offer goals that you can read through and modify based on your child’s needs.  Remember, YOU are a member of this team and have equal input.  iep-binder-1740x979
  2. Documentation.  I keep a binder with tabs for current IEP and previous year’s IEP, Progress Reports, ETR, Concerns (homework or tests that raise a need for services) and miscellaneous.  Save every email you send and receive in a folder in your email.  Save all communication with teachers, case manager, therapists, administrators, etc.  You will be surprised at how often you will catch a “mistake” if you keep all communication.  Bring this binder to all meetings along with any other supporting documentation you might need.  When asking for a service or therapy the district will likely not agree with, bring research studies supporting those services and therapies.  This past summer, I was asking the district to bring in a behaviorist to evaluate and plan for the school year.  The district was fighting me so I went onto my son’s college library site and found study after study supporting a behavioral approach.  It is hard for a district to argue with proven documentation and studies.evaluation
  3. Evalutions and 504 or IEP Draft.  You have the right to receive all evaluations and/or drafts well in advance of the meeting.  If this cannot be provided, you then have the right to request that the meeting be postponed so that you have the appropriate amount of time to review everything before the meeting.necessary
  4. Appropriate & Necessary.  At the meetings, do not use the words “I want”.  Your wants, needs and desires are set aside during the meeting and you must use the language “necessary and appropriate”.  Example: Based on Suzie’s recent speech evaluation that showed regression, it would be necessary appropriate to provide her with Extended School Year (ESY).  Leave your emotions at the door.Attendance
  5. Attendance.  You must do everything you can to attend all meetings related to your child.  If you are not in attendance, the meeting WILL take place without you and your opinion will not matter.  A close friend was recently in the middle of her chemo treatments and was afraid to enter a school building during the height of flu season.  She arranged to be on a conference call for the whole meeting so that she could fully participate.  VoiceMemoAll
  6. Documentation.  The district will likely have one person designated to take copious notes during the meetings.  Since you will be actively participating in the meeting, it will be difficult to take your own notes.  You could choose to bring a friend or family member along to take notes.  You could also ask for a Parent Mentor for your district to attend the meeting and take notes for you.  The easiest way I have found to solve this problem is to audio record the meeting.  If at the beginning of the meeting you announce you plan to record it, your district should have no problem and will likely choose to audio record the meeting also.  I downloaded an app to my phone called Voice Record Pro that allows me to record the meeting and then transfer the file to my hard drive.consent
  7. Consent.  At some point during the meeting, everyone in the room will be asked to sign a form to state they were in attendance at the meeting.  At the close of the meeting, you will be asked to sign a consent form to implement the IEP.  You are not required to sign that form during the meeting.  You can choose to take the IEP home and review it and decide if you are in full agreement.Hand writing inscription "Follow Up" with marker, concept
  8. Follow-up.  After the meeting, it is important to follow-up with all in attendance regarding any concerns that arose during the meeting.  You may also request a follow-up meeting.

Remember, you know your child better than anyone in that room.  You are your child’s “voice” and are responsible for consistently reminding your school district that you will make sure your child’s needs are met.Advocate-For-Your-Child-300x300







We decided to take a vacation this fall.  Originally, we wanted to go over the summer when my son, Jake, was home from college, but Jake was working and attempting to bank some money for the school year and we decided to do this in the fall when he was back at school and Katie had a long weekend off from school.  Jake would be at school and with his diving practice, he would be unable to take time off for vacation.  Anyway, planning a vacation with a child or adult that has autism is probably similar to how NASA plans for a shuttle launch.  Every scenario must be planned for and thought out.  Plan A, Plan B and Plan C must be ready at any moment.

I waited to tell Katie we were going on vacation until the week before.  Katie is like a private detective and can sniff out any change in the “the force”.  She found the itinerary and crossed out the dates moving our vacation to March.  Unfortunately for her the tickets were already purchased.  She then tried to negotiate the days we would spend in Orlando and days at my parents place in Florida; everything is a negotiation for Katie.  She would make a great lawyer or interrogator.

We began packing the day before we left.  If we start packing too soon, it gives Katie too much opportunity to put more stuff in her bag.  Needless to say, about an hour before we were to leave for the airport we threw in the towel and decided to bring another bag because Katie was continuing her efforts to pack her whole bedroom into our bag.  Instead of fighting, we brought another bag.  She managed to fill every inch of that 3rd bag.

We arrived in Florida last Tuesday afternoon.  We got our hotel room upgraded to a 2 room suite and Katie had her personal space which is something she DESPERATELY needs.  After years of doing this, we have learned we have to allow her to have her space if we want her to cooperate with us to do any outings!

Wednesday morning started a little later than expected.  Katie was fine with us stopping at Walmart since Roy had forgotten to pack underwear.  We stopped at Walmart and bought a large pack of underwear and were on our way to Universal Studios.  Katie had been planning her wardrobe and her day at Universal from the moment she had accepted that she was going on the trip.  She is a HUGE Harry Potter fan.  She had on a Harry Potter skirt, a white blouse and a Griffindor headband; she was ready for her Butterbeer!  Needless to say, she loved every moment and wanted to spend the day in Hogwarts and Diagon Alley!

Katie Universal

Katie with the Durmstrangs and Beauxbatons ~ a dream come true!

The next morning, we got up and out the door with no incidents or missing wardrobe pieces.  Katie was dressed in her new Belle dress and was ready to meet the princesses at Disney.  We knew this day would be harder because it was hotter and more humid and Magic Kingdom was likely to be more crowded than Universal.  We were not wrong.  No matter the season, Magic Kingdom is the big draw and everyone seemed to be there that day.  We managed to walk in the gate and Katie immediately got in line to take a photo with Snow White with no wait!  How perfect is that?  Win #1.

We made our way down Main Street and headed for the first air conditioned ride we could find – Pirates of the Caribbean!  We managed to make it around the park and hit several different rides without too long of a wait.  We did get the disability pass at Universal and Disney which is SO helpful.  It doesn’t reduce your wait time, but it allows you to sign in at a ride and then do whatever you want during the actual wait time.  You then come back to the ride and immediately get on.

Once we saw that everyone was lining up for the parade AND noticed some massive storm clouds moving in, we knew we had better get to the car.  We headed for the monorail and managed to miss a monsoon while riding in our comfortable cabin!  Win #2!  We headed over to Disney Hollywood Studios and checked out things there.  By then, Katie was starting to get irritable as were we.  It was HOT.  SO hot and incredibly humid.  We each got something cold to drink, adjusted our attitudes and got in line to meet Mickey and Minnie.  We ended our day at Epcot and headed back to our hotel.

The one thing we have learned is that while a vacation with Katie needs careful planning, it also needs flexibility and a willingness to know when enough is enough.  We don’t push anymore.  We don’t stop at every tourist trap, because it will turn into a nightmare.  If you take Katie into too many shops, she will want something from EVERY shop and have a meltdown because she cannot buy whatever she wants.  We remind ourselves that sometimes, less is more and that’s ok.

We headed down to my parents place in Southern Florida and began the relaxation part of our vacation.  Katie gets her own room and she immediately unloaded ALL of her electronics – a laptop, 2 DVD players (2 is better than 1), her Ipad, my Ipad, her phone, a surge protector and 2 extension cords.  She travels with all of this every time we go out of town.  I have learned to not fight it.  She also brings several of her stuffed animals.  I think it helps her feel more comfortable in her space; or she does it to annoy me.  I’m really not sure and have decided to leave well enough alone.  She spent most of her day locked in that room watching videos and making bracelets.  She isn’t bothering anyone!  She is on vacation.  While Roy and my idea of vacation is sitting poolside, shopping and eating out, Katie’s is staying in a quiet room with little light and being surrounded by all of her favorite things.  We don’t push her to do what she doesn’t want to do.  It’s her vacation, too after all.   Read the rest of this entry