The Mom Chronicles: A flawed System 7/21/10

Moms~
Here is this week's column. I hope you find it insightful and I hope that if you can relate you may share your experiences with me. There will be a second part to it I will be posting for next week. It's about the flawed system that is early childhood screaning for kids with disabilities.
I encourage any feedback you may have.
Amy

The Mom Chronicles: A Flawed System


My dear moms. I write this week on a topic very near and dear to my heart. This is the first of what is going to be a two part column, to be continued next week. I am examining the early childhood special education and early intervention system available to our children in our community and state. While I have spent a decent amount of time researching the subject for my family and their needs, as well as for you, I certainly am far from knowing all the ins and outs. What I am going to share with you is opinion based, with some popcorn facts and information I have been able to obtain. I would greatly appreciate any feedback any of you may have.

I have two children who are currently struggling with impairments and delays which have caused them to struggle in their physical, emotional and social development. As a mom, watching them struggle has been heart wrenching. What has moved me from sadness to anger and frustration, however, is the lack of services that I have been able to obtain for my children at a local level.

To date, my daughter was evaluated, as is the standard in MN, by our local school district early childhood folks. She was specificially evaluated for physical delays as she was at the time 21 months old and still couldn't take steps independantly. I was told at the time because she could pull herself up and stand holding on to something, she was too advanced to qualify for special services in our community. That was at almost two. Are you kidding me, I thought? And so since January, I have had to make weekly visits with her to Gillette Children's Specialty Care in St. Paul where she was evaluated by a Pediatric Orthopedist, given diagnosis for a physical condition causing her impairments, and now has required continued physical therapy and bracing for her legs and feet to be able to walk. My daughter at two still can not run or do steps independantly. She gets left in the dust behind her friends her age at the park and her brother who are miles ahead of her. I don't understand. Don't get me wrong. The physical therapy has been amazing and she has made enormous strides. However, Ella still is not where she is supposed to be, and instead of having services in my community available to me, I am having to spend an hour on the road, plus the cost of gas and parking, plus my time with my daughter to have these basic services rendered a half an hour away. How can this be?

Then we have my son. My Matthew. On the outside he is active and vibrant and glowing. But try to talk to him or ask him how old he is and at four, you can barely understand him and he can't tell you his age. He is starting to be able to tell you some colors, but he doesn't know his last name, can't identify most shapes, can't count to ten, can't write the letters of his name. He struggles behaviorally with impulse control issues and struggles with social skills as he has a hard time making his wants, needs, desires known so he becomes physical. He gets angry. He throws things when he gets frustrated, hits. And yet he seemed to have passed his preschool screaning with flying colors and thus when I requested it initially the school district would not further screen him. It was not in fact, until after he recently had his well child visit when his primary doctor was concerned on a number of levels of his development, most noted vision,speech and language issues and impulse control issues and after being contacted regarding this column that the school district was willing to evaluate him further. You see he was screened for his vision and they determined his vision was borderline and perhaps wouldn't even warrent glasses, when in fact he had a significant need for glasses. And how could that assesssment even have been accurate when my son couldn't even tell them the shapes they were asking him to identify on the eye chart because he didn't know them. He couldn't say the words, he couldn't remember the names of the shapes and so we resorted to him pointing to a chart to show me what he saw and matching the images. Most of the time he was distracted and guessing and pointing to random things. Are you kidding me again? And yet, again, no concerns. When shown an image of a ball my son would say "play!" or "ball!". He could not identify the color, the shape or even pronounce it correctly saying "bow". Yet my son was deemed ready for preschool with out any further need for help. If he was still struggling after preschool started let them know and they would consider reassessing him. He was noted to have a higher level of activity and needing more redirections then the rest of the kids they saw and regularly see, yet he was still ok to be watched. Again, it would be interesting to see how he did once school started and if it is interfering, go ahead and request a rescreen. And so I ask you, how can a child who is less then two months shy of four, who can't pronounce basic words, can't tell you his name, age, colors, count to ten, and any number of things that myself and my day care provider have literally worked for hours with him trying to get to sink in, not qualify for special services in our district? Again, we are headed to Gillette.

And so my dear parents, I am frustrated. I am angry. We have a flawed system. We live in a state where there is emphasis on birth to three and then K and up but that middle ground of preschoolers are kind of left hanging. There is little for early intervention in terms of addressing high risk kids. My son if you look at the risk factors for having disabilities has most on the list: a low birthweight, prematurity, low five minute Apgar scores, maternal health issues during pregnancy, and extended time in the nursery after birth for treatment for medical complications. And while it could be argued something should have been identified for him by now, I am finding that everytime I bring up a concern to everyone I get the canned response of "every child develops at their own pace and Matthew is just behind other kids". And despite these high risk factors I can't get any help for him. He is supposed to be able to get early interventions if he is at a high risk but I can't seem to get anything for him unless I want to pay for it or want my insurance to pay for and want to drive a great distance to get it. So when is it enough? When is it behind enough?

I come at this having worked for several years in special ed. Before I came in to Emergency Medical Services I was going to school to teach special education and I have seen far too many kids that have fallen through the cracks. Middle schoolers reading and writing at a kidnergarten level, doing Math at a first grade level, struggling to communicate, while exhibiting extreme behavioral issues and poor social skills, a lack of self confidence, and the list goes on. And so I ask you what is the cost? At what cost are we making our children have to be so delayed and behind before we will help them? There have been cuts to special education, as in every area, but to what cost to the long term? Is it not hurting our children more and costing us more in the long run to let our children struggle and struggle and become more and more behind until they can finally qualify for services when at that point they have developed other issues secondary to the primary one that now need to be addressed that could have been prevented all together to begin with?

There are so many reasons to intervene early, and next week I am going to discuss them. I am also working to gather resources to pass on to you if you are in the same boat I am. Don't get me wrong, we have a fabulous, dedicated group of special education providers in Hastings. The problem lies greatly beyond them. However, we need to look at our priority as a community and what we want for our kids. Perhaps we need to provide more for our kids then just what the state expects. I heard on the news tonight of a whole group of people coming together in an area of Minneapolis providing interventions for kids there to try to give them a better chance for the future. These are kids not qualifying but high risk kids based mostly on social factors. And there are multiple organizations who at the request of the community have banned together and are going to help the youth to try to catch them up. To try to give them a chance. What about our kids in Hastings? What are we doing for the kids here not qualifying under Minnesota standards? You hear each day of leaving no child behind. Both of my kids have been left behind and who is coming to pick them up? Who is going to catch my children up? So far, no one in our community, aside from a very proactive family practice provider and yours truly.

And so I urge you, moms, advocate for your kids. Fight this fight with me, to bring awareness and try to bring a change with in our community and within our state to help our children. To be there. So that they don't have to struggle as my kids have. It makes me sick. I feel lonely. I feel unheard. I feel lost in terms of who to turn to when my local resources close doors. How do I feel confident sending my son to school where I know he will be behind? Where he will struggle? Where he will not be fostered and feel confident? For he already is teased for not knowing how old he is and for acting out because he is lacking in social skills. The kids two doors down, they come and knock on my door all the time complaining about Matthew. Matthew this or Matthew that. Matthew. Matthew. Matthew. When is it his time? Heck, when is it mine? This mom needs help. And Ella. She is struggling physically mostly, but her language skills are also lacking. Not to the extent of Matty's but they are still lacking. And I am soon to be on this journey with her. Then what?

So my moms, I hope you will come back here next week and be educated. In the mean time, share your stories with me. Educate me. You are always welcome at my blog www.hastingsmomchronicles.blogspot.com I look forward to meeting you back here next week, hopefully with more answers and resources then I can offer you today. In the mean time, thanks for listening.