Saturday, June 9, 2012

theotherlion: change in plans

My name is Erika and I write over at the other lion about my son, Punkin, who has Fragile X Syndrome. Fragile X is a genetic condition that causes cognitive impairments, ADHD, autism, and sensory integration disorder. I have been working with children who have special needs, mostly in preschool, for over seven years. I wanted to write something personal today to illustrate what not to do.

So I had this sense of peace all school year because this summer I didn't have to worry about where Punkin would go for his summer day care; he would just go back to the program he attended last year. I signed him up, gave them my check, and anxiously awaited telling him he would be back with his summer friends. And then through a series of meetings, phone calls, and more meetings, it was determined that Punkin would not be able to attend this year; they simply felt unable to meet his needs. I think they are wrong, and they know that, but it is what it is and I began looking for something else.

I finally settled on sending him to a well known, national center that provides meals and some field trips. Before actually enrolling him, I wanted to speak with the director to make sure the program would be appropriate. I emailed, I called, I called again. I stopped in. Someone called me back and told me to call a different person. I called that person, who never called me. So I signed him up anyway.

The big day came and I still hadn't received the additional forms I needed for him, like health history and such, so I took him in early to pick them up and help acclimate him to the new routine. His "classroom" was a small, windowless room in the basement set up with tables and one rug to play on. I saw one bookshelf that looked like it was about to crumble under the weight of the wooden blocks it was holding and another piled so haphazardly with books the entire pile would have spilled like a Jenga game if one title was removed. It just didn't even seem clean.

A woman sat at a desk right inside the door and greeted us, but didn't introduce herself. Another woman sat at a table working with a few other children and said nothing at all. I took Punkin over to the carpet to play with some Barbie cars, all three of which were missing wheels.

We stayed for forty minutes and I couldn't tell you even one staff member's name or relay anything any of the staff said to my son directly; I had no idea who was in charge. In that forty minutes, the kids just roamed around freely; there was no structure. And after asking, I learned that this was typical of the entire day.

Punkin tried escaping multiple times. It was time for me to go to work. I didn't know what to do. I knew I didn't want to leave him there. Could he wait until someone picked him up in a little bit? My heart sunk into my stomach. We left. I cried.

Sometimes the stress of it all comes bubbling over, and this was one of those mornings. This was also a morning I felt extremely thankful for friends and family who could take over and watch him (My mom will be with him from now on). Many, many parents are forced to leave their children in places they don't love because they have no support. I'm telling you, as a friend, one of the most precious gifts you can give a family of a child with special needs is a play date. As a teacher, one of the most precious gifts you can give a family is a sense of safety.

So what, as providers, can we do to welcome children and families into our classrooms?

1. Return phone calls.
    Or write in notebooks, or send notes home. However you choose to communicate is fine, just do it. 

2. Be Organized. 
    Hey, I work in the world's tiniest classroom. No, really, I do. But it is bright, cheery, clean, and organized -- even without windows. That's a post for another day.
3. Introduce yourself to parents and children. 
    Nothing shows more respect for a child than involving them in conversation.
4. Provide parents with a schedule of your day.
    Maybe you can make up a new student packet with a  handbook, a list of basic supplies, and some classroom information such as your daily schedule and the best ways to contact you.

 How do you welcome new families?


  1. Erika. There are no words adequate for your story. I am heart-broken with you that your summer journey has been such a fruitless and crushing challenge. The situation that you have described is no incredibly unthinkable. It sounds like such a bad episode of a Lifetime Movie-of-the-Week where the concluding scenes are filed with sunshine and rainbows and triumphant music culminating in a tear fest of what-an-amazing-mom.

    Please know that we, your cyber family stand beside you cheering for that better day. Your monthly insight here has demonstrated the depth of your love, caring and determination. That there are such gaps in programming is such a harsh reality that only one in the midst of the experience can shine a light into such darkness.

    Surely this is a call-to-action. How can we support you? What do you need to hear?

    Debbie Clement

  2. Oh Erika as a mother of three boys of my own I know how our most valuable commodity is our children. My heart truly aches for you. You have given me pause to consider how fortunate I am to have AMAZING care for my children and choices. As a teacher of young children, it is difficult to sometimes find time to return calls immediately without an aide in my class or stop to have length conversations with patents before school when I'm hustling to get planning done, but you are right! A 'hello,' an introduction or a reassuring acknowledgement of some kind is absolutely what every child and parent needs and deserves everyday.
    God bless our parents and relatives that also love our children and come through in a pinch. Hugs to your mom.

  3. What a horrid situation and so upsetting for yourself and your son. I found it very traumatic looking at nursery's for our son - a lot where not very inviting or friendly - children or staff didn't talk to us :( - It makes me sad that this is the more normal and world wide than it should be.

    I'm glad that your Mom is helping out but that shouldn't have to be the case. There needs to be a movement to make it more normal for inviting, friendly, parent and child environments.

  4. What a lucky little boy to be blessed with a momma who knows what he needs and will go the extra (LONG) mile to get it for him. Child care is NOT just babysitting and keeping them from leaving a room. There HAS to be another place that will welcome you two with open arms and let you leave for work feeling confident and comfortable that your little boy will be loved, nurtured and made happy. I truly believe that everything happens for a reason...that next door is going to open with a warm, welcoming arms. Good luck to you and keep us updated!
    Mrs. Miner's Monkey Business

  5. Thank you, everyone. Your support means so much to me.

  6. I was so sorry to read this. Crossing my fingers that you'll find something soon.

  7. My heart aches for you, too, Erika. What a horrible and discouraging experience to go through. I'm glad you have such a wonderful mother. Your suggestions for childcare providers are great. You and your family are in my thoughts and prayers.

  8. I am keeping you in my prayers. A friend of mine posted on her Facebook page that she would no longer subscribe to the belief of "It is what it is"...especially in a situation like this. While the fight can sometimes be sucked right out of us, we have to remind ourselves that we should be the change we want to see. Makes it hard when you are balancing everything that you are - but shoot, this is so frustrating and heartbreaking all at the same time. People forget these children are somebody's baby...they figure to treat the situation humanely. I'm sending you big hugs and hope that you find that program for your little guy that takes all fear and anxiety away from the both of you.

    Crisscross Applesauce in First Grade

  9. What a sad story you share with us Erika. What it highlights for me is that although your boy has unique needs, this scenario is so wrong for any child in that environment.

    Your tips and questions are valid in ralation to all families, whether their child have additional needs or not. We all need to be introspective at times. Let's hope it doesn't take aterrible experience such as yours to spark us into action.

  10. This is so disheartening in this day and age...sounds like the dark ages! How can people who work with children be so heartless? Chin up anf keep on looking out for your child! There are a lot of good and caring teachers out there and I count myself as one of them.

  11. So glad you have a mother close by to help. It is heartbreaking - but there are good babysitters out there needing a job - especially in this economy. I was fortunate enough to find a wonderful lady who took care of my daughter and some other special needs children. I'm going to pin this. Try and pamper yourself. Thanks for sharing your story.

  12. Oh Erika, what a heart-breaking experience. I too am glad you were able to get your son out of that program by having your mom be with him. What is troubling is that this type of summer day care is allowed.

    Just to add some things that our center does for families, in the school year we:

    1) Have open house (for parents) and meet and greet (for kids and parents) before preschool starts
    2) SO much communication at the beginning and through the year with newsletters, large white boards, daily folders and emails.
    3) Family events in the evenings throughout the year
    4) Send home an "all about me sheet" for new families to fill out about their child

  13. This breaks my heart. I'm so sorry things happened like this, Erika. I'm praying that you will face better situations in the future. <3

  14. I am sorry that you are having such a hard time finding a place that is able to meet your child's needs. I don't know if you live near a university. If you do the education special education department or psychology department might know some resources in your area or have students they could recommend for babysitting.

  15. I'm so sorry you had this experience and am glad that your mother is able to watch him this summer. You turned the experience into an opportunity to share great tips with others. I've run a summer filmmaking/media day camp in the past and always send a note home to the parents about the expectations/plans for the camp and introduce ourselves to everyone when they walk in. Our camp space was very untraditional (an empty/abandoned auditorium), so I always felt that it was important to demonstrate to the parents that their children would be taken care of. I'm also very aware of teaching acceptance to my little ones.

  16. What a heartbreaking story. I wish there was some way to send this post to all daycare providers so others won't have to experience what you went through. I am glad you have your mother nearby to help.

  17. What an important, well written blog. All parents should read this read and be educated!

  18. I am so sorry that you had that experience. It is so great that you have used it as an opportunity to educate others. I am so glad you have support. Wishing you a beautiful summer.

  19. Oh, this makes me mad for you - I'm so sorry!! I really wish we lived in a more evolved world that understood and embraced all children. I'm sending you a big hug of support and hope that things will get better. I think it's brave for you to write this, thank you for sharing your heart.

  20. My heart feels for you. I hope that other people will read this and understand that we are all people. I hope that your story will help others not to have to deal with this.

  21. Erika -

    As someone certified in Special Education, it is disturbing to read that you were treated in such a way. I read through your four recommendations for teachers, and I have to say I don't think that's too much to ask. I would like to think I've always been one of the teachers who follows those four things. I plan to pass this along to others so they also can see things from a parent's perspective. Best of luck to you and your son in the future!


  22. To the world you may be one person, but to one person you may be the world.
    My "Momma heart" is breaking for you right now.
    Your son is truly lucky to have a mom like you! <3

  23. This story really saddens me. I hope you wrote a letter to the director of the center! You are lucky to have such loving friends and family, you are all in my prayers.

    Farming the First Grade Crop


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