On all my posts and articles that I write as an advocate, my closing salutation is consistently, “Cheering you on always!”
Why? Because I want to be your biggest cheerleader. To offer you emotional and educational support to keep going. I want to acknowledge, encourage, and empower you for being an amazing mom and an extraordinary woman.
After thousands of IEP meetings and being on the frontline through extensive advocacy experiences gained over the past 25 years, I can regretfully say that the SPED system is getting worse, not better.
I used to believe that it would get better. That informed parents and advocates could make a difference and we would eventually see change.
Sadly, this has not been the case and with the rise of the Equity, Diversity, and Inclusion movement that includes everyone but neurodiverse children, it’s not looking good for us and our kids.
Here we are in 2023 with 2024 fast approaching. That’s more than 48 years after IDEA 1975. Our society and our schools have the resources to provide the supports and services our kids need and are entitled to under federal law, yet parents are STILL denied access to these things each and every day.
It’s mind-blowing that equality, diversity, and inclusion rights are actually the foundation for the IDEA federal law, yet the ED&I activists are fighting for different races, ethnicities, religions, genders, and sexual orientations but omitting special needs children.
I’ve been asking this same question for a while now and no one seems to have a good answer or any answer at all.
Over the years, I have had some great relationships with many school administrators, educators, and service providers. While working with ethical district staff members, our ultimate goal was to try and work together, to build bridges between the district and parents, but the odds are against that effort becoming a reality because of the broken system.
These administrators are the good ones… the ones who really care about kids and want to do what’s right. They got their special ed degrees to help kids and then found out that the system won’t support them and if they speak out, they’re at risk of losing their job.
These staff members were the ones who didn’t allow themselves to become tainted by the broken system or fall prey to the temptation of having the power of an unethical administrator who is rewarded with a high salary. This is what your LEA uses to entice educators to become a sock puppet for the school district, holding the keys to the sped funding and are trained to say NO.
Moms are typically the ones who take on the role of the parent representative with the school. When it comes to parenting, it’s well known that the job most commonly falls upon the mother’s shoulders. We may drag the dads to an IEP meeting but in the end, this is a mom’s burden. And it’s taking a toll on our health and well-being.
Moms with special needs kids have been found to suffer the same stress levels as combat soldiers, affecting memory and producing other health issues.
There was a recent study done in 2020, which included hundreds of parents of children who are on the spectrum, that found that 18.6% met the criteria for PTSD.
Nearly 1 in 5 parents of kids with autism who participated in the study had enough symptoms of post-traumatic stress disorder to qualify for a provisional diagnosis.
The effect that undiagnosed PTSD along with the many other health issues caused by the stress of the broken system limits a parent’s capacity to connect with their children and other family members. It is troubling to consider how many parents of children with autism and other disorders might be dealing with PTSD without support, while trying to support their child.
Albeit this particular study focused on ASD and rare diseases, however, I believe that it doesn’t matter what the diagnosis may be and that overall, any parent of a child with special needs is at risk of PTSD symptoms and other health diagnoses. After meeting and working with thousands of mothers over the years, I’ve seen this to be true.
The difference between what most moms experience and what combat soldiers deal with is that mothers of special needs children have chronic traumatic stress disorder because it’s not in the past, it is in the constant present.
You can learn more about the study by going to this link.
A mom of a child on an IEP is constantly on the learning curve, studying special education law and trying to learn how to argue their position to get what their child needs.
Yes, parenting is hard at best when you consider all the typical parenting obligations. But special needs moms also must deal with their child’s diagnosis, medications, therapies, school curriculum and accommodations, while policing their school to ensure the IEP is being followed. Parents with kids who are medically fragile or have a medical diagnosis are faced with having repeated surgeries and some are just trying to keep their kids alive.
After juggling all that throughout the school year, by the time summer break rolls around, there could be ESY to attend and then there’s only a few weeks left to prepare for the next school year and the anticipated battles at the next IEP meeting.
It can feel as if we’re alone on an island, isolated and no one is coming to save us. It’s like we’re in a constant state of keeping our head above water, so we don’t drown and take our child with us.
A mom of a special needs child is in constant overdrive and survival mode, unable to take time for rehabilitation, rejuvenation, or respite. It takes a toll not only on their own self-care but on the relationships in their lives, with friends, with their partner, and with their ability to parent their other children.
I consider this sad situation a crime against humanity, yet it continues with no end in sight. I’m still here after 25 years, cheering on my fellow moms, and I’m not going anywhere. There are many other amazing advocates out there, but it takes some digging to find the good ones.
All in all, the IDEA is written to protect and meet the needs of children. This is the power we have if you can learn how to use it correctly. I’ve been doing it for many years and so can you.
You are awesome and I’m so proud of all the warrior moms in this amazing community and those I’ve had the honor to meet and work with over the years.
I know it feels like you’re alone, but there are more than seven million of us across the nation and that’s only in the USA. There are scores of moms in other countries who have contacted me with the same stories.
I acknowledge, honor, and respect you and I see your plight.
I can tell you from my experience that things did get better for my daughter, Chanel. She is 32 years old now and she is doing great. All the horror of school and IEPs, therapists, tutors, constant life-threatening seizures, and trips to the hospital are behind us. Chanel is a beautiful soul, and everyone loves her.
I do believe that the battles to get her what she needed in school and the constant therapist and tutoring schedule were worth it because she did benefit greatly from those interventions, supports, and services.
She is a talented artist and animal lover. She became a California Credentialed Dog Groomer and has been employed doing what she loves, which is working with animals.
Keep going… your child is worth it all. The battles with the school district, the therapies, and medical care, the sleepless nights, the anxiety and PTSD, the strained relationships and even divorce, the exhaustion, the hours and hours of studying sped law, the isolation and self-doubt.
It’s a thankless job and it appears as if there is no end in sight. But your child is precious and valuable. They have amazing gifts and talents to offer the world.
Cheering you on always,
If you haven’t joined our Private Special Education Parent Empowerment Facebook Group yet, you should check it out here.
Here’s what parents are saying about the group:
“I’ve seen other posts and advice from other Facebook pages. Your page is concise, provides further knowledge, and I just don’t see other pages that compare to yours in my experience.” – Jessica
“Thank you for sharing your knowledge, Valerie! This world needs more people willing to speak the truth.” – Elizabeth
Valerie Aprahamian is a special education advocate, IEP strategist, and speaker. She speaks on behalf of parents to protect the rights of neurodiverse children to receive the supports they need in public school.