The journey that I am on is filled with so much love, laughter and smiles that can fill you up to the brim, but not everything on this journey is easy or beautiful. Hudson is always wonderful, but the world can be ugly and hurtful. Some things bring sadness and make you feel broken. Sometimes it’s another family that is in pain and, therefore, it is painful for us all. Sometimes its poorly written laws or no laws at all to protect our children that leaves us feeling broken. Sometimes it’s an “I’m sorry” when telling someone about Hudson; even with love pouring from my mouth and, yet, they still look at me sadly. Why? I don’t understand so much on a journey that I love, why does the world need to believe that this isn’t a rewarding life? If you think like that, you are wrong.
I recently read a Sun Herald article about a young boy here on the Coast. The headline said, “Child with Down syndrome scarred after altercation with teacher assistant, Coast mom said”. The headline alone is heartbreaking, but there is more to the story. I can’t write everything I know about this, as it is an ongoing investigation. I met the family and I have been helping guide them through uncharted territory, not just for them, but for me to learn, too. I hurt with what happened and I would love to change it, I would, but the best I can do now is make sure that it doesn’t happen again. It doesn’t matter all the wonderful changes we bring, a story like this cuts deep and it will be what stands out and keeps fear in hearts. Down syndrome (or any disability for that matter) should be best understood by those given the opportunity to care for our children; not another fear we have to learn to deal with.
Oftentimes, the diagnosis of Down syndrome alone Is the “cause” for all unexplainable findings. Unfortunate, but true: He’s not gaining weight… well, he has Down syndrome. She isn’t crawling yet… well, she has Down syndrome. I could go on and on. Not that each child is different, but Down syndrome is the excuse given. This applies to behaviors and actions, too. Not always, but often a diagnosis will direct a caregiver outside the home, ie, a teacher, the automatic response for dealing with this individual, not the behavior alone. Let me explain; not all children with Down syndrome are verbal. Actually, many, especially the younger children, are unable to talk or talk well. Families usually understand communication best, followed by close friends. This opens the door for any wrongdoing to the child to be left undocumented, left undiscussed and left unresolved. A nonverbal child cannot tattle on another person for hurting them or bullying them. Actually, nonverbal children are often sexually assaulted, too. Unless a mom sees a bruise or another reports abuse, it can go unnoticed. Unnoticed, but life altering for the one who cannot communicate or stop the abuse they are experiencing.
Here are a few examples:
A little girl with Ds in Florida had an IEP (Individual Education Plan) that her parents signed along with her school administrators. It was written to allow her to attend school and not wear a mask. She had small airways and choking was an issue. It was asked by her doctor and family that she not wear one for safety and sensory issues. The little girl was nonverbal. For months, her teacher was tying the mask to the little girls face and removing before she would go to the bus. A substitute took the class one afternoon and forgot to remove it. The little girl stepped off the bus with the mask on. When investigating, it was found that her IEP was ignored and the girl was put in daily danger… AT SCHOOL! Unacceptable, right?!
A friend of mine shared that his daughter was grabbed and shook by the chin over spilled paint. Her neck, like many children with Ds, is fragile and she needed medical attention. The teacher was required to go to training and it never happened. Another friend shared that her daughter was talking and being disruptive to the class and was tied to a chair in the hall for hours all alone. And nothing happened to insure it wouldn’t happen again. Recently, I read about a young boy with special needs being drug by his feet through the halls of the school by a school board member. This is still being investigated, but the video shows it very clearly. These were instances in other states; you can see it isn’t a one off, but systemic.
Lets talk about Mississippi:
In 2016, we didn’t have a seclusion or restraint policy in place. We were one of only 5 states remaining without one. One headline read: Mississippi’s Horrifying Trend of Punishing Students Through Restraint. In 2010, it was said that Mississippi students were forcibly restrained or secluded more than 700 times, but the actual numbers could be far larger. Remember that nonverbal students cant speak up and these cases are usually left unreported. A policy has been put in place that is a guideline to follow, but it is not a lawful order. It also says training is to be in place, but we haven’t learned of this training or if it is mandatory. I have learned that our children with special needs have been put in baskets with lids and closed boxes. I have learned that children have been placed in closets with something used to block the door to them in. Closets with supplies have many dangerous items what could make this terrible situation worse. The one place we should feel at peace with our children going to is school and this is what I am learning. To all the amazing wonderful teachers reading this, please know this is not all teachers, but one doing these things is too many. Training, understanding and mainly love is all that we ask for those who choose to teach.
The Mississippi Department of Educations Seclusion and Restraint Policy is available for all to read. My trusted sources say it is a C or C+ policy. Why can’t it be an A+ policy? Why is it nit law? Why is seclusion still an option? And restraints are very broad and usually escalate a situation. When a child is a harm to themselves or to others, de-escalation is the only objective and its usually quick with a simple solution. It should all be in their IEP and that should be followed emphatically. It was found that children with disabilities were forcibly restrained or isolated when they were not physically aggressive, and by staff who were not trained in these techniques.
Hudson is only four and we’ve experienced seclusion. Hudson was secluded to a room with no toys, no music, no playing and no other children all over hugging. Nothing aggressive. Nothing harmful. Yet, this was the first and only option they used, all within 30 minutes of arrival. If this can happen in a church, no telling what happens to our children. Especially the ones with no voice. No way to tell us that they need us. No words to communicate that they are hurt or hurting inside.
My latest data is from 2015. This survey had 400 participants from Mississippi. Not all children had special needs in this survey (47% reported “yes” to child having special needs tho). It was asked if your child had been physically restrained in Mississippi. 13% answered “yes”. 17% answered “I don’t know”. Remember, this is physically restrained. Reasons given for the restraining were (in order of highest recorded to least): misbehavior, other, did not do what the teacher asked, acting up, endangered themselves, threw an object, I don’t know, threatened a child, destroyed property. The “I don’t know” answers would likely impact these numbers. 50.84% of parents are unaware if a seclusion room is used at their child’s school. Now, has your child been secluded in school? 13% said “yes” and 15% said “I don’t know”. In same highest reported to least: misbehavior, did not do what the teacher asked, acting up, did not complete work, other, endangered themselves, I don’t know, threw and object, threatened another child. While secluded, 25% said there was a lock on the door. 6% said there was padding on the walls. 40% said that their child was hurt as a result of restraints or seclusion. 72% reported “no” to the question: Has your child experienced behavioral intervention methods that led to a positive outcome? Again, the “I don’t know” answers are alarming and make us worry, because, well, we don’t know and our children cant tell us. This data was collected for the public hearing for MDE Board Policy in 2015. It’s still very similar today.
We can make this all preventable. If videocameras were allowed in the special needs classrooms, to give an extra layer of protection to our nonverbal children, it would allow for parents and advocates to see everything. If a child with special needs is in an inclusive classroom, there is no need for cameras there; plenty of voices to speak up are already in place. If training for all teachers was mandatory, it would provide all basic information to handle any situation. If the policy was lawful, it would protect the children better and have stronger consequences when broken. And if it was deemed a “hate crime” when abuse against a nonverbal child/adult or any child/adult with a disability is committed, it would deter some of these crimes.
School shootings and how to prevent them are in all of our hearts. It’s a very evil world and protecting our children is a huge responsibility to us all. It is terrifying to think about and to hear the reports of how things were handled is appalling. We have to do better. We have to protect all children. There are some things that we cannot go back and change, but we can make sure they don’t reoccur. All children should have schools that protect them, teachers that love them and parents that feel safe when dropping their kids off. This applies to every level of care and will impact the future every of every child. Let’s protect them all to the best of our abilities.
The system is EXTRA BROKEN. The policies are EXTRA BROKEN. Children and families who have suffered abuse are EXTRA BROKEN. Stories like these leave us feeling EXTRA BROKEN. I’m ready to take these broken pieces and glue them back better, glue them back stronger and glue them back the way God would. I am the glue. EXTRA broken makes me EXTRA determined.