Be a boss mom/dad

As a parent of an autistic child, you are not just a caregiver, you are a fierce advocate, a tireless champion for your child’s well-being.  If you knew me before Max was born, being a fierce advocate of anything would not the way you would have described me.  I was way more relaxed and a go-with-the-flow kind of person.  This had to change and what a learning curve it has been.  Navigating the world of schools, therapies, agencies and support systems can be a daunting task, but with the right approach, you can ensure that your child receives the resources and care they deserve.

Coming from South Africa to America, the glaring lack of support we have back in Africa, is so noticeable now.  Thankfully, I have met many people who are really making a difference and trying to create awareness of autism there.

Be a boss mom/dad

Here are some guidelines on what to look out for and how to effectively deal with resources.

Educate yourself about all things autism.  Again, here you can start getting overwhelmed and that is not the idea.  Get really good at understanding your child’s condition, strengths, challenges and individual needs.  If everyone did the same thing and pooled resources, there would be a huge amount of info out there for those that follow in your footsteps.  This is the first step in advocating effectively.  Stay updated on the latest research, therapies and interventions available.  A note here to my SA followers and clients:  if you all start asking for therapies and interventions and support, people will start taking note and start providing what is needed.

Be a boss mom/dad

Surround yourself with a team of professionals, family members and friends who understand and support your child’s journey.  I used to call my support team, The Golden Triangle.  Between the school, doctor and speech therapist, I had created a perfect match for Max to feel comfortable and loved and also to get the help that he needed.  Joining a support group like Live Life Inspired Autism and other online communities for parents of autistic children, can provide valuable insights and emotional support.

Familiarise yourself with the laws and regulations governing special education and disability rights in your country or state.  In the US your child is entitled to a free and appropriate education and reasonable accommodations under laws such as the Individuals with Disabilities Education Act (IDEA).  In SA there are grants available, tax deductions and special schools.  None of these are really ideal, but a help nonetheless.

Individual Education Plan

Work closely with your child’s school to develop an IEP (individual education plan) tailored to the specific needs and goals of your child.  Attend IEP meetings prepared, articulate your child’s strengths, challenges and preferences and advocate for necessary accommodations and services.  If there are no IEP’s in your country, nothing stops you from speaking to your child’s school and outlining what you need from them in order to help your child.  Do not just be complacent and think that the school knows best.  You only get the best outcome if you, as parents, are personally involved in your child’s schooling.

Don’t wait for issues to arise, take proactive steps to ensure your child’s needs are met.  Communicate regularly with teachers, therapists and other service providers and address any concerns or challenges promptly.  You are entitled to ask for regular updates to find out how your child is doing.

Be assertive

You will need to develop strong communication skills to effectively convey your child’s needs and advocate on their behalf.  Be assertive, but also approachable and collaborative in your interactions with agencies and service providers.  Also keep a detailed record of assessments, evaluations, IEP meetings, correspondence, and interactions with everyone.  This documentation can serve as valuable evidence in case of disputes or appeals, not to mention in helping your child.

This requires you to maintain an organized system of your child’s medical records, educational documents, therapy schedules and contact information for agencies and service providers.  Staying organized will help you stay on top of appointments and not go into overwhelm.

Remember, you know your child best

If something doesn’t feel right or if you disagree with a recommendation or decision made by a service provider, trust your instincts and speak up.  With all the positive feedback I had heard about ABA, I desperately wanted Max to get this therapy.  Yet, it was not good fit for him.  His anxiety spiked, he started ticing uncontrollably and it did not feel right for him.  Your intuition as a parent is a powerful advocacy tool.  Do not discount it.

Before you engage with service providers, research their reputation, credentials and track record.  Seek recommendations from other parents or professionals in the autism community.  When I was looking for a new school and doctor, I asked around and while some came highly recommended, there were just a few things that did not seem right, again this is where your intuition comes in.  I also know that in SA there are a lot of schools popping up claiming to work with autistic children, however their credentials and testimonials did not line up.

Be a boss mom/dad

Don’t hesitate to ask questions about the services offered, qualifications of staff members, funding sources and eligibility.  A reputable provider will be transparent and forthcoming with information.  Clearly communicate your expectations and goals for your child’s care and development.  Ensure that the provider’s approach aligns with your values and preferences.  They may be autism providers, but if they cannot understand your child’s needs, they may not be the best match for you and your child.

While this is tough, remember you are not alone in this journey.  By fighting passionately and effectively for your autistic child, you are not only empowering them to thrive, but also paving the way for others.  Be a boss mom/dad, advocate fearlessly and watch your child soar.

Till next week.

A

Xxx

This is a tough enough journey and you don’t have to go it alone. Join me for a free consult and we can discuss the way forward by creating a step by step plan to get your child everything that they need.

Email me at antoinette@lliautism.net – Click HERE

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