Special Needs and Public School

My son Benjamin who will be 21 in September just finished school ... like ... forever!! HEEELP!!

It is OK. We have wonderful plans for him, which I will talk about options for in another post. I want to talk about his school experience and how public school works with special needs in this post.

Now, there are many students who fall under the label special needs. I am restricting my comments to the special needs that I know and understand a little bit about, which is developmentally disabled students, students with mental health issues, and perhaps a little bit less, physically disabled. My son encompasses a little bit of all three. He has Down syndrome, he has obsessive compulsive disorder, and he also has chronic health issues, though they do not prevent him from being ambulatory.

Now, I homeschooled Benjamin till he was 10, partly because I homeschooled my other chidren (initially because of Ben's health) but also because he spent his first seven years with significant health problems that led to scores of hospitalizations with infectious diseases, and also to scores of surgeries.

At age 10 he presented as pretty healthy and also as utterly bored with homeschooling. I had his three older siblings who were reading Shakespeare, doing algebra, and working on their Latin verbs, and Ben, while the other kids took turns teaching him math, reading, and writing, was bored enough one day to take a red sharpie marker and mark off our entire main floor bathroom (walls, doors, tub, commode, sink, and mirror) with little red tic marks -- thousands of them.  Add to that another day where he tried to see how much dog food he could flush down the commode in one flush -- the next thing he knew, public school was on his daily schedule.

We started him in fourth grade at the local elementary school. 

The school was more or less flabbergasted to get him enrolled. They clearly rolled their eyes at first, wondering why this mom shows up with a kiddo of age 10, and I think they expected he had no skills and that he would have suffered academically from utter neglect. (Perhaps they had experienced kids coming in like that in the past.)

At any rate, we had a series of meetings and established what services Benjamin would benefit from in terms of speech, physical therapy, occupational therapy, hearing impaired services. The teacher was a young enthusiastic woman with a sunny bright smile and a large heart. Ben instantly took to her, and for two years we walked him back and forth to elementary school.

He loved the activities and attention and other kids at school so much that the week after he started school, on a Saturday, we were woken up by the doorbell ringing. Outside stood a 10 year old girl holding Ben's hand. Apparently Ben had gotten up, decided it was time for school, walked over there and nobody had been there. This girl had been out, she knew Ben from class, so she walked him home. -- 

And so we had to have the talk about what it means that "it is Saturday." -- Local school keeps kids like Ben safe because everyone in the neighborhood knows him, and the few times he has been lost, people already knew him and walked him home. 


I won't detail all of Ben's years in school, but I will mention that as he grew into his teen years and became 'less cute' and more suspected as a growing-larger teen boy, while his heart was still with the 6 year olds on the playground, the one singular place outside home where he was unconditionally accepted was in the public schools he attended. Always welcomed enthusiastically by teachers, para-professionals, other students with special needs, as well as by regular students at the school. 

It is thanks to public school teachers who worked hard to connect us parents (via monthly Saturday morning breakfasts and occasional dinners associated with school plays) with other parents that I even after Ben is out of school have a strong parent support network consisting of two different groups that meet monthly. It is thanks to those teachers and that community at school that Ben fostered friendships outside the special needs classroom with students who were his regular lunch buddies in his "circle of friends", students he is still in touch with, students whose parents are still my friends. 

But more than that, public school helped Ben in so many ways. Apart from just helping him learn to read and write (on top of what my daughter achieved in homeschooling), having amazing math programs that Ben just adored (he still works through 1st and 2nd grade mathbooks just for fun in his spare time), in addition to the hearing impaired support, the PT, the OT, the speech therapy that helped us get him an excellent communication device, in addition to all this, school helped Ben

1. work well and hard in projects he was capable of contributing to

• greeting card making
• setting up and taking down dinners for school staff
• landscaping
• paper shredding
• food teams (sandwich making, cookie making -- hygienically!!)
• walking dogs for Humane society

2. School got Ben out in the community on a weekly basis, exposing the community to these students in a positive well regulated way, and helping our special needs students be active and confident in the community

• museums
• zoos 
• bowling
• parks and recreation centers
• grocery shopping
• restaurants
• Christmas shopping for parents and siblings

3. School has helped Ben regulate his emotions when he gets anxious not only by therapy and psychological intervention but by working with me, finding a strategy for de-escalation, and for giving Ben simple coping mechanisms (safe place, coloring activity, etc) that help him get through his day with a minimum of emotional upset, and a maximum of functional hours.

4. School has also accepted Ben in spite of his deficiencies, his flaws, and his -- let's face it -- utter lack of value in a free-market competitive economy. Public school has that attribute that it MUST accept all students, and it has welcomed Ben, worked within the federal law regarding special needs, and done a world of good for my son.

Is it perfect? No! I do have friends who are parents of students with special needs who have not gotten from the schools what they had hoped for their students. I will not discuss their cares here, since they are not mine.

My hope with school for Ben was that he would find a community where he could learn and grow, where he was accepted, and where he would enjoy being.

Same hope I have now for the new adult programs that Ben is going to be in starting June 1st. I want him learning, growing, accepted, and happy. If he can, as I hope he will, hold down some part time (paid or unpaid) employment with group support, that too, I hope is in his future for a few hours per week. (He calls it his new school, and that is the highest compliment Ben can bestow on anything).

In conclusion, I cannot say enough good about all the ways in which Ben was affirmed and loved by super-energetic teachers who personally cared for him and his (sometimes difficult) emotional and academic well being.  And it takes quite a person (or two) to teach those who are not only developmentally and cognitively challenged, but who, as is the case with my son, also has a mental health component that can totally lock him up and have him stuck, impossible to deal with because of his anxiety and inability to move onto the next task. 

School to Ben has not ever been 'a chore', nor was it ever something he wished would go away so he can go into summer vacation. On the contrary, he has always dreaded summer and wished it away so he could get back to school, where he is loved, affirmed, challenged, employed in meaningful activity -- where he is among friends, peers, and professionals who honestly care for him and want to be with him --- unlike, for example, church, which is a mixed bag where some accept him (bless them!!) some avoid him, and some actively can be frustrated with who he is, what he does (or what I let him do) even if they try not to mention it too much. 

Not so with school. In high school Ben  has marched triumphantly through the hallways during breaks or lunch, getting multiple HIGH FIVES or fist bumps from scores of students, most of whom are pleased to give him 5 seconds of their time, students who may not all achieve so highly themselves, but who thanks to integrated high schools have been blessed with the smiley presence of my son Ben daily. 

Our public schools serve ALL students of ALL needs, and I think this is an important point to make. In many cases there is no other place for them. The more severe and specialized the special needs, the less likely that the needs can be met at a private or a charter school. 

During the 2013-14 school year, 6.5 million students—13 percent of the public-school population—received an IEP.

Some things may be able to be run better when they are run by business men or in a business manner with competition in the marketplace, but special needs are not one of them. Special needs COST us, the tax payers, but it is what we do because we care about each other and we care that each and every citizen (rich or poor) finds a meaningful place in our society.

 "(S)pecial-education programs are costly and provide few tangible benefits for school districts. School districts are rewarded for giving high-achieving kids ... Good students raise test scores, increase the ranking of the school, and keep property values high. Special-education students are red marks on the ledger."

https://www.theatlantic.com/education/archive/2017/01/is-the-bar-too-low-for-special-education/514241/

Special Needs -- finding Wholeness through Brokenness

When I initially found out that my son Ben had a serious heart defect, I was devastated. Not only did I not know what it meant in terms of life and death, which was scary, but more to the point the 'scary thing' had happened to me, i.e. My soon to be born baby was not perfect. My general expectation of what life would bring was disrupted. I felt threatened. My illusion that life was something I controlled was shattered beyond how it had ever been shattered before. My life would never be the same. I knew that much. But I did not welcome the change.

What I have learned from 20+ years with Ben is that living with persons who have disabilities, living with them in peace and acceptance is a life-long endeavor to accept life and with it all the brokenness that life inevitably brings. -- And that makes it sound so pretty and virtuous, that we might almost all wish that we dealt with at least ten persons with special needs daily so we could all achieve this wisdom and peace. -- It is not that pretty. It is a moment by moment realization of one's own brokenness in dealing with another person who does not have the judgment to make adequate decisions for himself, and who sometimes makes time consuming or costly or just strange decisions after which you get to pick up the pieces.(And that is of course assuming that it is ALL about you!!)

Actually my paragraph above made it sound a whole lot more broken than it is. I think, in essence, living with special needs is a constant journey of fixing that which could be done better and accepting the rest with gratitude -- all the while remembering that it is indeed ANOTHER PERSON you are dealing with, so all your fixing and accepting needs to expand far enough to respect and uplift another person's wishes and desires, perhaps even above your own.

That is not my forte. At root I am a perfectionist. My Ph. D. Is in theoretical nuclear structure. What I really like is complexity. I am completely detail oriented when I am pleasantly engaged with a topic that interests me -- my preference is to be immersed (nay drowned) in the esoteric. Checking for jam spots on shirts before going out (for the 1000th time) is not my forte. In fact, repeating that which I think I have already made clear to be my express wish can be a great irritant to me. 

In short, I am a not particularly patient person at the root of my being. Just ask my older kids. I was the kind of mom who wanted the dishes cleared and kitchen clean every time after every meal, rooms orderly, essays for school written early, etc. Perfection in grades was not necessary, but doing your best, working hard, being consistently responsible, timely, and pulling your own load were definitely my expectations of the kids. -- Perhaps every mom dreams of that, but I know, not every mom stubbornly insists on it the way I tried to. That worked sort of OK for my regular kids who are all independent adults and who have, by now, derived their own version (or rejection) of whatever I tried to instill in them. --- However, an  expectation of performance can be a deadly trap to get into in dealing with Benjamin.

Benjamin has achieved a great deal of independence in many areas, like dressing and self hygiene, but with releasing those areas to him comes a cost, loss of control, and with that loss of control a certain cost.  For example he chooses what to wear on a given day, but then, as a consequence, I might spot -- at the last minute as we are ready to move out the door -- shorts in January, or huge yogurt stains running down his shirt.  -- His personal hygiene is good for the most part, but a couple of months back, I realized that his clothes never made it to the washer and dryer any more. He was recycling his favorite outfits to wear over and over again. Another time I noted that that he no longer was brushing his teeth, hence I needed to step back into a few areas where I had happily turned the responsibility over to him.

And with every discovery of where he 'falls short', every time I have to reel in his independence and explain, exhort, and impress on him the way things need to be done, I see, not only reluctance to comply, but also pain in his eyes. He winces at being corrected (yes, I know we ALL do!!) because he tries so hard (OCD) to do what he can to be just like everyone else, and having it pointed out (as if life doesn't poke him with it almost every minute of the day anyways) is immensely painful because he knows how short he falls already and how difficult it is for him to achieve even just a tiny fraction of the kind of independence that his siblings so easily achieved for themselves years ago.  -- In the moment, it is not difficult for me to stop, ask him to take off the jam stained shirt and have him go back and get another one. But every single time, after that moment, when I see his reluctance, his closing in on himself, his indisputable sense of inadequacy, I feel broken too, and I wonder why life is so hurried and busy that I always discover those stained shirts at the last minute, as we rush out the door. There HAS to be a better, gentler, more understanding way  that does not include this rat-raced feeling that we are always in a rush to get to the NEXT thing. 

When Benjamin leaves the house in the morning, he says good bye to all his stuffed animals, he pets each cat, he carefully zips up his coat, puts on his backpack, makes sure all the straps are comfortable, and then he leisurely makes it out the door while his driven mother tries to look the other way, lest she ... eh... eh... bursts!

Life with special needs ever holds in tension the stress and hurry and endless tasks that are involved for any adult in America of holding a job that demands your all, combined with the necessary slowing down that is required when dealing with a person whose mental faculties and general character are not capable of doing anything fast.  Ben needs to understand what we are doing next, where we are going, why, and how everything is going to pan out, before things happen. He is neither motivated, nor driven, like me. Why should he be? What is the rush?

His sense of time is limited. He always says, "Next Friday is my birthday", and while it may be true that this year his birthday is on a Friday (he DOES have that fact down), his birthday is in September and it is currently May. Knowing that, knowing HOW he speaks about time and what understanding he has of the future, took me years to understand. I used to always correct that, "yes, your birthday is on "a" Friday, but not "next" Friday."  Never mind. Now I just nod and say yes, your birthday is on a Friday. But I do not correct the 'next'. That word does not mean to him what it means to me.

What made me think of brokenness when I started writing this was the many incidents that occur where hindsight makes me feel broken -- makes me feel like the person who doesn't have the necessary skills and forbearance to get through life contentedly. Many of those occur because of my hurriedness alone. For this past year, we have been getting up at 5:15 to 5:30 on work/school mornings because Ben's school bus leaves at 6:37. Ben needs 1 hour to get up, get dressed and eat breakfast and walk 3 minutes to the bus stop. 

I put my stuff by the door, so I don't forget it (that includes purse, keys, lunch, computer, etc for work).  We get ready to go and suddenly I cannot find my keys Usually they are in my canvas bag, but there is no room today because I am bringing donuts to the lab for a special occasion. Ben has gone outside and taken the kitchen trash with him (as requested) and he is waiting by the car.  I tear through the house. Where are those keys? I could have SWORN I put them in my purse by by the door.

Well, Ben decided to be helpful, so when I finally come outside to check on him and make sure he is still where I asked him to be, I find that he has my key ring hooked on the belt loop on his pants. He wanted to help by locking the door, and more to the point, he always wanted his own keys. We are late now, and I am experiencing a combination of relief and annoyance, since, once again, he took my 'stuff' and moved it some place where I could not find it. I.e. I am organized, I have a million things to think of in the morning in order to make this 5:15 am deal work (FOR BEN who is going to his transition work program) and he grabs my keys and throws off my entire game -- which of course would be so perfect if only other people did not step in and mess it up.-- This little incident resulted in my getting him a house key, which then resulted in him learning to lock and unlock the door to the house, which resulted in him being able to go on the special needs bus and coming home and letting himself into the house with his key, which means that now, if I am running 10 minutes behind the bus, he can still get in the house. -- A major feat!! 

Summer has just begun for us, teaching is over (next week is final's week and then I am done for the semester). The goal, the dream,  my wish, is for a new more contented slower pace, that respects and uplifts the needs and desires of both of us in our symbiotic existence.

But if I have learned anything about living with special needs it is that while I slowly learn to recognize some of his needs and wants and hopefully foster a more meaningful environment for him and for me to live contentedly in, he is --to me-- a mystery precisely because we are so very differently driven. I often see his needs in hindsight and try to repair the damage I do by misunderstanding him. 

One person in a book described the experience of having cognitive disabilities this way. You walk into a store and go to the customer service desk. You hand the clerk a jacket. She takes it and quickly scans the tag, opens the cash drawer and voila! She hands you back your $83.35 cents. -- You take it, and you walk out of the store, frustrated. What you really wanted was to explain that the zipper was broken and you wanted an exchange.  But here you are with the money. -- The clerk was much faster than you, you never had a chance to explain. --- So with Ben. He has many ideas, many thoughts, but he often gets bowled over by people who are fast, people who can talk well, people who mean well (like me). It is the few who take the time to stop to hear what it is he really wants.