The Village Party

Maggie's "It Takes a Village" party was a raucous celebration. it was a Thank you party to every one of her
'Village People" that helped her not just to get to 18, but to thrive.

There was family, close and extended, friends old and new, teachers and therapists current and former and so many others from Maggie's World. I tried to load this slideshow, but it needs to be in video form and when I put it in video format, it was blurry. Hence I will just provide you with a link to watch the actual slide show. It should give you an idea of the festivities.



Maggie's Party Pictures!!!!!


I can tell you this: No one had more fun than Maggie!!!!!!!!!!!!!!!!!


And I realize there is a typo in the word Stanford.  Perhaps that's because I didn't GO to Stanford (that was for  you, Fiona)

It Takes a Village

According to facebook, it is Special Education week. Or it was last week. Or it was two months ago and I’ve only just received word. Whenever it is or was, it exists because facebook deems it so. With the bazillion users on facebook, consciousness can be raised, and that is a good thing. Even though I did not put the bizarre message in my facebook status about special ed kids not being contagious (what!?!) and only seeking acceptance, I applaud the attempt acknowledge this population. 

It is not just the special education students who should be acknowledged, but also the whole special ed world. It is teachers, paraprofessionals, nurses, administrators, therapists and the bus drivers.  It really “takes a village,” and when it works, special ed is that village.  

I know many parents have terrible experiences in the special education world because there are not enough resources to give every child they program they should have. Many parents end up fighting school districts to get the services their child needs. Unbelievable amounts of time, effort and money are wasted in these fights.  If those resources could be directed into the education programs instead of to the fighting, a lot of the issues would be resolved.  There are unreasonable parties on both sides. Some districts simply refuse to make even the slightest attempt to comply with the letter or spirit of the law. Some parents are wrapped up in the fight and forget what their fighting for.  This is not the majority of districts or parents, but many perceptions are based on this minority.  This is not to say things don’t need improving – they do. There are huge issues with unfunded federal mandates regarding education. It school districts are required to do things, they have to get the funding to do it. Funding or not, though. districts need to embrace the concepts and ideals of special education if it is going to work. It can work and it can work well. Maggie is a perfect example of that.

Obviously, we are big supporters of Special Education in this house.  Maggie would not have the success she does without it. I could have instructed my boys in arithmetic, English, spelling etc. They would not be as thoroughly trained as they were by going to school, of course, but we could have muddled through. I could not have done that with Maggie, though, no way. I would not have had any idea where to start.

Maggie’s education started when she was about six months old. Her first teacher was Jeri Hart, from the Blind Babies foundation. She saw Maggie potential immediately and showed me what to look for.  Vision is a huge part of early learning for babies and when vision is impaired, as it is with Maggie, some of the developmental markers will appear to be missing when in fact those markers are dependent on vision. I learned to advocate that point for Maggie immediately.  That prevented Maggie from being mis labeled early on, and kept the door open for learning.

 Maggie started an infant program including physical, occupational and speech therapy. All of those disciplines worked together to lay the foundation for the building blocks of education yet to come. I did everything they said to do, but I had no idea what was going on or why any of it mattered. Frankly, I went to all these appointments to ease the isolation of this new life I found myself living.  I  did not know that learning to reach for switch toys was a crucial first step in her communication.

Maggie started pre-school when she was three. I was supposed to put my medically fragile three-year-old child on a school bus. Right. That just was not going to happen. As fate would have it, just before school started, I participated in a parent panel presenting to the bus drivers at the bus company. The other parents had complaints about busses being late etc. Maggie had not started yet and I told them I was scared to death. I learned then that the bus drivers take a great interest in the special ed kids they drive and worry about their well-being. I met the guy who would be picking up Maggie and many of my fears melted away (Ok, I did ride the bus with her for a while until they put a nurse on the bus.)

From the infant program to high school, Maggie has had great teachers, great classes, and great staff and has achieved tremendous success because of the entire village.

 Tomorrow I will show you some of the “Village People”

The Village People

Whew! What a weekend. I am actually glad to see Monday roll around so we can get back to what functions as normal in this house.

The graduation was great. Maggie was the very last one to process in and went right next to where I was sitting. She was very excited. For reasons not entirely clear to me, she was the very first one to get her diploma. Everyone else went alphabetically but I think it was easier to get the wheelchair up onto the stage ahead of time and have her go first. I realized it just before they began calling the names because I could see her feet sticking out from behind the curtain on the stage.

Of course, because Maggie was first, my anticipation and interest waned; and listening to the other 250 names became very long. I realized then how little interaction I had with the school. All my interaction was with Maggie’s classroom, and she was in the same room with the same (wonderful) teacher for all three years. Other than those who worked directly with Maggie I knew the principal and the assistant principal and recognized a speech therapist and one teacher, but that’s it. That is just the way it is. It is a special Day Class within a typical school. That offered Maggie a lot of opportunity to mingle with typical students, but mom kept her distance.

Saturday was the party. There were over 50 people through the house during the course of the afternoon. Maggie was in her glory. There were grandparents, aunts, uncles, cousins, current and former teachers, aides, friends. All of these people, along with others who did not attend contributed to making Maggie the success story she is today. I told two of them that if it truly takes a village to raise a child, they were her village.

Raising any child requires input from many sources. Many parents will not admit it, but they take cues from grandparents, friends, teachers, etc on how to be a good parent. These cues are absorbed into and become part of their parenting style. It’s subtle, but it’s there. With a special needs child that is magnified a thousand fold. I did not know what to do or how to do it. I had to learn medical procedures, and ways to teach as well as learn from Maggie. There is very little peer pressure to raise your severely disabled child a certain way because no one is competing. In fact, most people would prefer not to know anything about it. Hence, as a parent you find the ones who know and gratefully gobble up whatever they have to offer. Eventually you find you feet and pick and choose the advice and suggestions. Nevertheless, as a parent you know that there were people who showed you the way. There is no subtlety involved.

I want to say a big thank you to everyone who helped Maggie get where she is today. There are doctors, nurses, teachers, therapists, friends and family. All of you contributed in huge, meaningful ways and Maggie and all of us appreciate it more than you know. You are the village elders.