Where to begin…

Sometimes it’s hard to know where to begin. Mothering a child with special needs is overwhelming, all the more so the systemic problems preventing kids from getting needed services.

Mothers on the Frontline started with one simple idea:

Mothers have unique insights into the needs of their children.

Not an earth-shattering idea, is it?…
Or maybe it is a game-changer!

What if we created a website that would allow mothers to share their stories, their wisdom, their experiences, in such a way that they would:

  1. Be empowered to most effectively help their children
  2. Reduce the stigmas surrounding children’s mental health
  3. Give decision-makers key insights to help them better help our children

That would be game changing.

My perspective as a mother has often been downplayed or dismissed by professionals, whether they be doctors, educators, or the many therapists who have come in and out of our lives. It is not that these individuals are anything less than caring people who have dedicated their lives to helping children – it is that they have been taught to think of themselves as “experts” on whatever is ailing my child, though they have known him for less than five minutes and only see him through their narrow professional lens.

Here is where the conundrum lies: all of them have valuable knowledge and experience to potentially help my son, but taken together, the result is most often contradictory advice, services in silos, failure to address the whole child, and unnecessary trauma for both my son and family.

I wish my experience were unique. It is not.

A few years ago, I was desperate. I was unable to get the school district to set up and consistently follow an Individual Educational Plan that was appropriate to my son’s medical diagnoses and unable to access medical services he desperately needed because of a three-year waiting list for Iowa’s Children’s Mental Health Medicaid Waiver.

After trying everything, I called my state senator. He generously met me for coffee. That meeting changed my life in two ways:

  1. He helped me understand how to navigate a broken system. (For example, when the director of special education did not return my phone calls or e-mails for months at a time, he recommended that cc my next email to the board of education. I did and got a reply within a half hour.)
  2. He helped me understand that elected officials want to hear from mothers. Politicians are aware that professional associations and their lobbyists have ulterior motives; but they know mothers are focused on the wellbeing of their children.

Wow! Let’s take that in… not only do elected officials want to hear from mothers, but our voice is critical to effecting change.

My first thought was “mothers of special needs children are doing everything they can to survive the day – we are not in a position to be politically active.”  (At the time I was bringing my son to five different therapy appointments a week and working full time -absolutely necessary given the out-of-pocket expenses not covered by insurance. Not to mention my son’s condition prevented more than two hours of sleep at a time – for either of us.)

Circumstances changed that year – my son’s symptoms became much worse and we were no longer confident that he was safe to himself, and possibly to others. After his first mental health hospitalization we made the heartbreaking decision for him to live in a PMIC (Psychiatric Medical Institution for Children), where he lived for nine months.

These months were a time of healing and recovery: for a period of time I knew my son was safe and saw him flourish academically in an educational environment that met his emotional and developmental needs.

As for me, the reduced stress, regular sleep and less complicated schedule of those nine months gave me the ability to look beyond daily survival for more sustainable and systematic solutions. I became a children’s mental health advocate.

Since then my son has finally received the Children’s Mental Health Waiver. Its services have been key to his success living in the community. Our struggles are not over, but each year he becomes better at articulating his feelings and asking for help before he escalates or considers hurting himself.

Advocacy has become a regular part of both of our lives. He has become a Tourette Syndrome Ambassador and works to help others better understand the condition. This work has blended nicely with his passion for politics and he has enjoyed opportunities to talk to legislators at the state and federal level.

As for me, I have spent the last few years contributing a mother’s point of view to state-level discussions on children mental health health policy. This work motivates me to find ways to help other parents share their stories, their wisdom.

Which brings us back to idea behind this website:

Mothers have unique insights into the needs of their children.

The goal of Mothers on the Frontline is to empower mothers to share their wisdom and a platform to do it.

In doing so it can also give decision makers a deeper understanding of how children’s mental health issues intersect with family systems, educational systems, juvenile justice systems, health care systems, communities, etc. In other words, its helps professionals and elected officials have a better view of the needs of the whole child.

3 Replies to “Where to begin…”

  1. I love this idea and am looking forward to hearing what other people have experienced. I think there are so many changes needed and the lack of resources and support has, at times, more overwhelming than my children’s behaviors. I feel like the ability to share successes and concerns from a wide variety of experiences will be extremely beneficial. Let me know if you ever need anything to keep the conversation going!!

  2. That is so true about moms with special needs kids, most days they are justing trying to get through the day. I remember the days of IEPs not being read by the teacher and my child being labeled the bad kid.

  3. Very interesting read. Mom’s advocation are the most important tool a child can have. My son had to go to PMIC also, twice due to safety in out home. I came across your information because I am getting ready to go to the hill March 29th with NAMI as a parent frustrated with the system. I have no idea what I am getting myself into but want to do more. The doctors and therapist and other slew of professionals I see take me pretty serously about how well educated I have made myself but I feel that I can do more. Or try to. I hope to read and learn more…

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