Finding your voice and finding your people

Today’s guest author is Tiffanie Hayward. Tiffanie would like to share her experience related to the use of seclusion and restraint, based on her work as an advocate. Tiffanie does not work for an agency, but rather for individual parents and families. Her advocacy comes from her belief that all people should be embraced, not tolerated, respected, not tormented, loved for who they are not despite who they are. 


My experience with the special needs community started with volunteer work when I was sixteen. I started working for a company that helped special needs children and their families deal with the difficulties of navigating the school system. I left that work for a while, and as it turns out my path led me to law school and then to be a stay home mom. Both of my children are neurotypical, so my perspective is not as a parent, but I genuinely seek to elevate the voices of the parents and children in this amazing community.  

I started volunteering my advocacy skills in my local school system two years ago. In that time, I have seen children as young as five years old, and children as small as thirty–eight pounds secluded and restrained. I have spoken with parents who fear retaliation so severely they will not go public. I have seen a child who was shaken and now refuses to speak. I even saw a child made fun of for their disability, by their teacher. These life experiences are traumatic, this is abuse.

I have spent many nights crying because of the feelings of helplessness in a nationwide system of abuse. These draconian practices are akin to what was done in the old asylums and one day will be seen as such. 

I cannot give many details of the cases I have seen, for the privacy of the families that I serve. I can say the pattern is always the same. First comes the fight for the Individualized Education Program (IEP), second comes the abuse, third comes the removal of services when complaints are made, and lastly the traumatized child is either forced out of the school system or worse yet they continue to be abused due to a lack of appropriate resources. I have never worked with a parent who did not love their child, and who had not exhausted every option they had. I confess I tend to get my way in these situations on an individual basis, but my struggle is at the systemic level. 

I came to this organization (The Alliance Against Seclusion and Restraint), desperate for advice on how to make system-wide changes. Within minutes I learned things that are already helping me to become a stronger advocate. Rather than supporting one traumatized child at a time, I am hoping to influence a greater systemic change. I also learned the power of my voice. I never thought to share my experiences as I never felt they were my stories to share (as an advocate). I make no comparison between my sadness to that of the parents of these amazing children. I feel honored to work with these families and I have yet to meet one I didn’t love. 

I share all of this in the hope that others will speak out too. The fear parents feel, and the shame the schools impose on them is palpable. So many people feel alone, they question if it is something they are doing wrong. They wonder if there is anyone who would understand, or who would even care. They are overwhelmed living in a state of constant fear over the next phone call when the place they trusted their child to has harmed them. They seek refuge from the state, nothing is done. They look to the law, nothing gets done. 

I hope that I can encourage families to find their voice. If and when they feel safe to do so, that they can share their stories.

Parents need to find their people, who will support and fight with them, and when they are tired will fight for them. So many are so tired, and it is my honor as an advocate to attempt to lighten this burden of abuse, called seclusion and restraint. 

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