Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #Maneuvering

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Raising a child with special needs is a lifetime of learning to maneuver untraveled roads.  When I say untraveled, I don’t mean that no one has ever gone that way or had these experiences before.  What I mean is that for the parent, it may be new, unfamiliar or unknown territory.  Well, at least it was for me.  Before having my youngest daughter, I wasn’t exposed to the world of special education, nor did I know the meaning of the acronyms IEP, IDEA, OT/PT, ECE, SLP, ABA and so on.  In the beginning, it was like arriving in a foreign country without my suitcase and translation guide.  I knew there were hotels there, and somewhere I had a reservation, but I was confused as to how to get there. I was disoriented and didn’t speak the language. Often, I felt lost and incapable of knowing how to help my daughter. The minute the diagnosis was made, I immediately began to read every book and find every speck of information that could possibly help guide me. I needed a map because I was tired of ending up on dead end streets.  I made sure that I at least knew how to say a few key phrases, even if I wasn’t fluent in the language. The first phrase another parent taught me was “Know her rights!” That was eye opening and only the beginning.

When we received the Autism diagnosis in the early 2000’s, the Autism Spectrum disorder was just being identified and many of the roads newly developed.  I was searching for ways to help her cope in a world she didn’t feel comfortable in. I learned about fidgets, weighted blankets, swings, noise cancelling headphones and seamless socks.  It was like being on a perpetual scavenger hunt, searching for those unique items that helped calm the senses.  Everywhere I went I found fidgets to keep her hands busy and her stress low. I would buy them like they were some rare gem I discovered and because I just might never travel this road again or they may stop selling this hidden treasure, I overbought.

There was even a time we spent a day traveling from Illinois to Wisconsin and then on to Minnesota to visit one of the very first Autism Shops that we learned about.   It wasn’t a large store, but everything in there was related to Autism and helping those with Autism.  It was where my husband and I purchased our very first Autism Awareness t-shirts. It was our first step to educating others about Autism, but our journey was far from over and our advocacy only beginning.

As we started to travel down one unknown road after another, we often got turned around and would have to start again.  Some nights we felt as though we were the only ones on the road, but the longer we traveled, the farther we got.  On the days, we would get a flat tire or run out of gas, a friendly car would drive up and offer to take us into town, where we could get our tire fixed or fill up our gas can and we were back on the road again. I have come to appreciate those warriors who had traveled before us. I now try to return the favor, and help others who are further back in their journey. My wish is that we all will work together and help one another, for the good of our community…for the love of our children.

There was a time when we thought we had the academic part of our daughter’s life handled, but then a new team member would join and tell us we no longer needed those goals.  They would change things or not follow the IEP.  It was like being forced to take a detour and your GPS not rerouting you. So, what do you do? You turn the GPS off and go back to what use to work.  You unfold the map from the glove box and you maneuver through the detour.  You rely on what worked before.  New technology is great, but it’s not always foolproof.  You fight for what’s right.  You make sure the whole team understands what the IEP said and you let them know you’re totally open to carpooling.  After all, it’s better to travel together, than all alone. You’re a team, and you need to be respected as a member on that team, but you need to respect the other players too. If you know deep in your heart that what they are doing is not in your child’s best interest, don’t accept it, fight for your child.

Often, I didn’t fight a change, like when speech was removed from her IEP after first grade, only to be added back in, during second grade.  It was discovered that although she had good speech, she had very little expressive language. After watching her struggle and lose ground, I asked for another speech evaluation, this time focusing on expressive language. What they thought she no longer needed, ended up remaining on her IEP through her senior year of high school.

I would pick my battles, but sadly it was always my daughter who suffered if I didn’t pick wisely.  Multiple times someone who never worked directly with my daughter would ignore something on her IEP or would decide something was no longer needed.  In those instances, it made for a bad start of a school year.  It caused additional problems and ended up being reinstated, after I had to fight for the IEP to be followed.  Don’t be afraid to defend the IEP.  I’ve noticed many times when these changes are being made, there is not a discussion, but more of an order being given to you, the parent.  We don’t have to be bully back, but we do need to be prepared to prove and defend why a change shouldn’t be made. At the end of the day, you are the one dealing with the meltdowns, the panic attacks and the child who is doing their best to survive in a world that doesn’t always understand them.

It is amazing to me how many times I talk to people along the way and hear how different their journeys have been. I won’t lie, there were many times we attempted to maneuver through a road block, only to be turned away.  It was a frustrating setback, but with perseverance, we often found that open road and located a caravan going our way. You can learn so much from the experiences of others.  With Autism, not everything works for everyone. For many of us it is a combination of many different therapies/programs.  My daughter responded to occupational therapy, speech therapy, social skills classes, psychiatrist/psychologist sessions and cognitive behavioral therapy, which all helped a lot.  For others, it may be ABA, diets, vitamins and/or vision therapy etc. It only matters that you find what works for your child.

I needed to learn to let my daughter discover how to calm herself down.  This was something she had to learn to do.  I couldn’t always save her.  It wasn’t what was best for her in the long run.  For so many years, we were surviving and not really living. We were spending so much time getting through the meltdowns, the outbursts and the not coping.  It was like being a professional juggler.  You had to keep the balls in the air always, but it was an exhausting way to live.  It is still a work in progress.

We never stop searching for ways to help her life improve.  If something is not working, don’t stay with it.  We never took the diet route, but others swear by the success of gluten free diets. You should do what is best for your child and your family.  I have gone to multiple seminars and learned many different methods.  We were lucky, we saw positive results and haven’t always had to keep searching for new paths to take.  Having said that though, we also have lost out on opportunities, because we stopped looking.

Know that each transition in their life, brings new untraveled roads.  Every school change and even every new school year, brings a new education team who only know your child from a file they receive or hear about.  I made sure we had an IEP meeting that included the new team and arranged a “before the new school year” meeting with the new team/teacher(s).  I made copies of her IEP and made sure I gave the teacher/teachers one.  I was surprised to learn most teachers never actually see an IEP, but are only told a child has one. I also made a cheat sheet “Things You Need to Know” about my daughter, with my contact information on it.  I tried not to come on too strong, but as a partner for a successful year.

We all travel at our own speed and our own direction, but we don’t ever have to do it alone.  When you’re lost, ask for directions.  When your lonely reach out to others for support.  If the car doesn’t move, get out and walk, but don’t give up trying to find help.  Don’t let yourself get so exhausted that you can’t recover. I know even now, about once a month, I get burned out.  I get to that point where I just want to throw in the towel, but then I see my daughter and how far she has come and my battery gets recharged. It is okay to be kind to yourself and allow yourself to pull into a rest stop now and then.  It is okay to stretch your legs and take a break.

“I may not have gone where I intended to go, but I think I have ended up where I intended to be.”  Douglas Adams

 

By Mary Ellen Bogucki 

Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a twenty-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger.  Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today.  Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort.  Bree currently is attending Harper College in Palatine, Illinois pursuing an Associates Degree in Human Services.  She is a member of their Cross Country and Track teams and the President of the Access and Disabilities Success Club.  Harper College offers a Transition Autism Program (TAP) to help those with Autism transition from high school to college.