3 Simple Ways to Building a Super ASD Team and Why a Limited Access Pass is Crucial for Your Child’s Success

September 6, 2014

in Ask Dr Lisa, Autism Challenges

 

“Dr. Lisa, my 5 year old daughter has behavior issues related to Autism Spectrum Disorder. Her pediatrician diagnosed her last year at age 4 with Sensory Processing Disorder, but she was recently diagnosed with ASD by a neurodevelopmentalist. I have been told by her teacher and family members that she will most likely outgrow her sensory issues and that once she does, her behavior will improve. I don’t feel that way. I want to build a team of professionals that will help her now, so she will not have problems later in life. How do I create this idea of a team? Is it even possible or am I overreacting?”~Rebecca, NJ

 

Building a team for your child with Autism Spectrum Disorders is one of the most crucial steps towards creating success for your child’s future.  Many may not agree that you can actually build a team, but I did for our son, Luke, so I beg to differ.

Your team is all of those go-to people that support your child’s needs in any way. This team consists of doctors, therapists, friends, teachers, counselors, neighbors, family – you get the idea, right?

The problem is not so much finding a doctor or friend, but weeding through the good ones vs. the bad ones.  It is pretty easy to find professionals and have an abundant amount of people in your life, but if you are like us, you may find some may actually make things worse.  Some people may be downright rude, negative and self-righteous.

It made helping my son harder when I allowed too many negative people on my team and actually allowed them to dictate to me.  Yes, this includes doctors I thought we needed and family members or friends I believed would “come around.” I also had therapists on our team that my son deeply disliked, so you can imagine how wonderful those visits went.

Seriously folks, the battle to get a child with ASD to all the therapy visits does not need to be harder if the child dislikes the therapist. Nor does everyday life need be made harder for you with non-stop negativity from a few family members or friends.

I did this all wrong the first time around, but one day I just got fed up with negative people (more like blew up) .  In doing so, I opened up a circle for a real team; one with a supportive soulful and unconditional love and positive mindset for my son. This propelled me to write my popular book, The Overtilted Child, where I share exactly how I helped my son, Luke, overcome ASD challenges. Why should you have to make the same mistakes I did? Simply read my book and get the know how!

Choose Positive Mojo Cheerleaders

It is crucial that the people in your child’s life are POSITIVE. I cannot stress this point enough, so I will say it again.

Make sure the people in your child’s life are positive people. This means they accept your child 100% as he is (flaws and all) and do not jump to criticize, correct or scold him or you for poor behavior and/or parenting.  I wasted too much time worrying about other people’s feelings, words and actions regarding what we were doing wrong as parents and what my son was doing wrong as a child. The negativity and corrective criticism (as they liked to call it) can become overwhelming. Although many of these people love you and your child, they fail to realize that they are not helpful on any level and that they are not the only ones doing this to you.  Therefore, your life can become a constant barrage of people telling you what you and your child are doing wrong and how to do it correctly. Run. Run away from them. Far, far away.

Choose positive supportive people who get you, your child and Autism Spectrum Disorders.  Surround your family with these wonderful people who will go that extra mile to read about your situation and learn how to enter your child’s world instead of demanding him to be in theirs. Trust me on this one.  I did it wrong for so long but when I got it right, helping my child became easier. I became happier.  Positive cheerleaders will lift you up and empower you to help teach your child the skills needed to overcome many challenges related to ASD.

Love must be a positive supportive love. When you surround your family with this type of love, the positive energy will transform how you think, talk and act towards your child. He will only grow and blossom from it. Positive cheerleaders also see life as having challenges and quite often, are great in leading you through those tough times.

Simply put:  A happy mommy means a happy family.

Do not fret. I know what you are thinking. Refer to #3 for what to do with negative loved ones that you just can’t toss to the curb, but should. Really. Those people need to work on their own behaviors and inner self before judging you and your child, but we know they never will. Hence, #3.

Design a Strong Therapy Team

A strong therapy team is a team you need to build that consists of ALL the professional people that help your child overcome challenges related to ASD. Each member must also be a positive person and be in sync with your beliefs and feeling about your child.  Many times as I advocate with parents, I hear how they dislike their child’s counselor or therapist, but they are afraid to seek out a new one.  Many times parents are not comfortable with the medications and/or treatment plan, but do not know where else to go.  My advice to you is to keep looking for team members that you and your child click with. This is so very important!

We tried two psychiatrists and a psychologist before we found Liz, a social worker, who embraced our son Luke and myself with open arms.  Liz helped us tremendously through one-on-one counseling sessions where she deeply listened to our concerns.  Luke talked in private about his anger issues and frustrations with teachers he did not jive with.  He was very upset with not knowing how to express his anxiety with adults who would not listen.  I was emotionally at a breaking point too. I had gone to three psychologists who maybe spent 15 minutes with us and handed me prescriptions for Luke as we walked out the door. Three different professionals all approaching my son the same way. No testing of any kind. No diagnosis except he has ADHD and you will need these medications. It was scary. Very.

It was not until I met Liz that I realized I needed to be the one who seeks out and interviews positive professionals who qualify for our team. I decided one day that I will be the one who decides who is hired and who is fired from our Therapy Team. This included teachers, principals, therapists, holistic practitioners, dentists, pediatricians, eye doctors, etc… Once I did this, I found myself surrounded with amazing, kind and compassionate professionals who took so much of their time to test, diagnose and treat Luke according to his needs and also teach and create academic, social and emotional success.

Build a strong positive team that jives with you and your child. Hire and fire if need be, but do not accept anyone you are not comfortable with. This takes time and a whole lot of patience, but it is priceless.

Our team today for Luke is: (this may be different for other kids)

  • Neurodevleopmentalist
  • Nurse practitioner
  • Social worker therapist
  • Eye doctor
  • Dentist
  • Child Study Team
  • Guidance Counselor
  • Advocate ( me, but I have one too)
  • A Go-To Person in Administration in District if Principal Does not Jive
  • Teachers
  • Special Education Teachers
  • Occupational Therapists
  • Podiatrist
  • Chiropractor and Nutritionist (me)
  • Autism Spectrum Parent  Support Group

Create a Limited Access Pass List

I acknowledge that there are loved ones in our lives that simply don’t get ASD. If you are anything like me, you love them dearly, understand their ignorance, and are not ready to shut them out of your life or your child’s.  Some people are very important to your child, even if they do not understand him. Family members come to my mind.  You too?

Create a limited access pass for them.

This pass allows them to be fully present with you and your child. It allows for both of you to bond, love and create good memories without punishing them for their poor behavior towards you and your child. However, this pass you are giving them MUST have limited access and rules. The time spent with them must be limited because if they are negative and creating more drama for you; you must make sure it is in drips and drabs. You need to prepare yourself and mindset before time spent with people who warrant a limited access pass, otherwise, you may find yourself losing your temper or getting super emotional with them. This will only create more problems for you.

You can choose if you want to tell them about this pass and your rules, but you don’t have to. I found those I could not handle were the very ones that did not understand my rules, boundaries or need for limited time spent together. These type of people don’t see their part in the problem.  In their minds, their behavior towards you and your child is from love and perfectly acceptable. That being said, you do not need to even let them know they are on your limited access pass list.

Now, I cannot tolerate liars. It is one of those things that boils my blood. However, I have learned that to keep the peace, little white lies often keep families and friends who are not easy to get along with, very happy. When you are invited to social gatherings that do not work well for your family, you decide if you should go or not. Use your limited pass here.  Decide which events you and your family can handle and which ones you can’t. Use a polite excuse with those on your limited pass list why you cannot make or attend their event. Keep in mind that the point of the limited pass is to limit your time spent with these people, so oversee who is allowed to spend time with your family and what events you attend.

Let go of the guilt. The limited pass list eliminates shutting out loved ones and still allowing them into your heart.

Trust me.  As you child grows and learns to overcome challenges related to ASD and coping skills to deal with negative people in his life, your limited pass list will get smaller. It gets easier if you stand up and advocate for your child now.

I would love to hear how you are building your own ASD Team and Cheerleaders!

Please share your amazing ideas in the comments below so others can try them out too!

Yours in Health and Happiness,

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Resources:  *Always read my disclaimer and photo is by Dr. Lisa Sulsenti.

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{ 2 comments… read them below or add one }

Karin October 1, 2014

Love this post, DR. Lisa. You shared such wise advice. Protecting one’s energy and keeping the circle small is such an important piece of radical self-care for everyone in the family, especially for those dealing with lower reserves.

Dr. Lisa October 2, 2014

Karin, Thank you! And, although it seems obvious to avoid negativity and reserve one’s energy, it is such a difficult thing to allow yourself to do with people in your family and close friends who don’t get your child’s behavior. Instead, this inner conflict arises with pleasing them, being kind and protecting your child. However, I learned the hard way that protecting one’s energy and keeping the circle small, supportive and positive is KEY in creating a thriving family. Limit those who are negative for sure! ~Dr. Lisa

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