Coping with Special Needs - One mom's journey

What absolutely broadsided me after becoming a special needs mom was dealing with other special needs parents. Doctors and nurses kindly connected me with a Down syndrome support group, and I went a time or two and fizzled.

Support Groups

No, I am not against support groups, and I have been supported by many wonderful people over my son’s 18 years, but I would say that there is no one way of dealing with this, and I would add that our differences in dealing with these stresses majorly divide parents of special needs, who to the rest of the world SEEM to have so much in common.

I was introduced to the Down syndrome community in Kalamazoo, Michigan first. My son has Down’s but that was the least of my problems. He also had a severe heart defect, cleft lip and palate, digestive issues, respiratory issues, etc. 

My real first support group consisted of parents --not with children with Down's-- but with severely ill children who might not make it. Most kids with Down’s have one or two medical issues that gets repaired, after which junior grows up on a Down’s growth chart, with a Down’s developmental schedule, he reads, he talks, he moves about, and he generally turns into a congenial, fairly easy-going fun kid. My son was near-comatose the first year, and then screamed the second. Theses parents had concerns about sitting and walking, I had concerns about survival. 

Ben spent four years being so critically ill, that he seemed like a minor miracle every time he turned the corner on the latest threat (bacterial, cardiac, pulmonary) and came through strong.  He is largely unintelligible today (though we do have communication devices and paper and pencil to clarify), and he shows traits of inflexible, rote, autistic-like behaviors, which result in quiet, inward-turning melt downs when his world becomes over-stimulating or too unpredictable for him. He has Down's, yes, but that is not the biggest issues in helping him cope with life productively.

Alone

But, even when I find, as I have, communities with kids who are in-one-aspect like Ben, we each walk this path alone. Our children do, and we do. But alone is OK. Alone can strengthen you.

Note – I am not knocking support groups or friends. I don’t know what I would do without folks who can relate to a particular struggle with a Medicaid refusal on needed equipment. What I am saying is that special needs and how we deal with the challenges is fundamentally related to our basic coping mechanisms, many of which we bring with us from our childhood homes. 

For example, when I was pregnant with Ben, I was determined not to abort, though we knew from 17 weeks that he had significant heart issues, clefts, and Down’s. I went to appointments at University of Michigan Hospitals, and time and again, a doctor would encourage me to consider abortion. I was mildly annoyed and found the suggestions inappropriate, but I have always been a somewhat independent person (I moved 7,000 miles from my family at age 22).

When I would mention these encounters to friends, my friends would have tears well up in their eyes at the thought that a doctor could suggest that I should destroy Ben. And I thought, .. huh?? This is MY kid, and you are crying... and I am not?? 

Call me Mr. Spock … but the idea of destroying Ben was a non-issue, since the ‘choice’ to do so was entirely in my power and I knew I would not allow that. I don't get emotionally upset at potentialities. Good grief, he was so sick, and there were so many unknowns. If I had mentally chased every bunny trail of what could have gone wrong, I would be neurotic by now. 

Venting

Another event I remember involved a short-term friend C., whom I met when Ben had his second heart surgery and managed to stay in the hospital for almost four weeks due to post-operative complications. 

C.’s son was in the same intensive care unit as Ben, and when C.’s son’s recovery was complicated by pneumos, she freaked out and spit nails at doctors and nurses right and left right there in the cardio-thoracic ICU. She was acting out of raw fear – her fear that her son would not recover.  She was fit to be tied, and the nurse exited inconspicuously while nodding to me that this was my friend and I would be the best person to talk her down to size. 

Nothing wrong with C's reaction, and she was a chill gal most of the time, and she needed to let it out. That was not me-- at least not in public. I was raised to be a polite inconspicuous Scandinavian who tries hard not to inconvenience others. At times when my son's life was threatened, I'd either move into action (if there were something  I could do) or I would internalize it, or try to process it by discussing the details with the cardiologist. Somehow understanding the scientific details engaged me in intellectual pursuits which somehow dulled my fears and gave me an illusion of control. 

Then there are the long-term threats, like the realities of what my kid will actually be able to do or not able to do in life.  Parents of special needs have a variety of coping mechanisms there too.

When your kid is really really sick, like mine was, you tend adapt what I call the total-parent-child-bond, where this kiddo is the only thing that matters to you, and caring for him trumps anything else you do. 

This backfires....

... when he gets well (or if he dies) you have no life left, and no friends either – doctors, nurses, surgeons, nutritionists, respiratory therapists, the medical supply delivery truck driver, and your friendly Walgreen's pharmacist were your only friends -- all paid friends. – I kid you not, when we moved from Michigan to Colorado, we got a SIGNED CARD from everyone on staff at our local pharmacy at Walgreen's in Portage, Michigan to tell us good bye. We had teary eyed goodbyes and hugs with pediatrics and cardiology, especially.

I was in the total-parent-child-bond for about six years because Ben was so sick, and I think it is a dangerous place to be because it is not-sustainable. Your kid will get better, or your kid may die, and you will come out on the other side, having missed happenings in the rest of the world -- you forgot Aunt Ethel's birthday  ten years in a row and she is miffed. you don't see your neighbors, your church doesn't remember your family any more, and the people you thought WOULD be there for you when you are finally out of the medical tunnel have gotten new friends and have busy lives that have moved on. 

Medical Friends

As examples of my sheltered existence for those six years, I have no recollections of the second Clinton presidency – what he did or did not do, whether the economy was good or bad, what happened in the rest of the world during those years.  That pretty much translates to Kosovo and the Balkans  did not happen in my little universe of medics, oxygen tanks, G-tubes, and feeding pumps.  

I have heard that some moms get so dependent on Medical-ville in this stage that when their child is about to get better they develop Munchhausen-by-proxy syndrome and actually physically MAKE their kid ill just so they can come back to the hospital... so they can stay in the world they feel loved in – kinda like a recently released convict who commits a crime so he can go back to prison because he does not know how to function in the real world.

I was  not like that. I was relieved when the pressure let up and every morning was not a game of dice where the options were ER, doctor's office, inpatient, surgery, or stay home and tube feed.

I always the one who did everything for Ben in the early years. -- Not healthy -- I saw other parents of special needs children who were seriously ill, who took turns in the hospital, who shared the care of the child, who took turns being up at night, and I think that is a healthier mode than what I ended up in. When my son was three, I was offered the chance to go to a silent retreat, and I realized that nobody else in my household was capable of taking care of Ben, so in effect I could not leave without training folks, getting nursing support, etc. And I did make that change, untied myself a bit from that leash, and left for 2 glorious days of simple foods, quiet evenings with candle light, the woods, a few girlfriends and some much needed rest.

Blame

One of the more toxic coping mechanism for us parents of chronically ill children is: ‘whose fault is this?’. 

I had friends who had a great need to blame someone. Not that anyone blamed anyone for a kid being born with a specific syndrome, but when something went wrong with that kid, when a doctor failed to notice a condition, or to take it seriously soon enough, all the negative energy pent up (from the frustration of having a child with a chromosomal abnormality and all the side effects ensuing from such a condition) could then be targeted at that one physician who made that one mistake on that one day. 

It’s kinda akin to kicking the dog after you have had a bad day at work.  He is the next thing that crosses your path, you have had it up to here and then some, and he just happens to be in the wrong place at the wrong time. I think we all do that, at times, and hopefully we ask forgiveness and restore relationships, but the danger comes in when that becomes a life obsession – always trying to find someone to blame when something goes terribly wrong.

Anger

I have met many parents of kids with special needs who at the root are very angry people. They are angry at school, at all that school should be doing for their kiddo, but isn't. They are angry at doctors who didn't catch certain symptoms, or who chose the wrong treatment. A good example of this is the crowd of parents who band together to blame their child’s autism on the MMR vaccine – a claim that cannot be substantiated scientifically, and in fact, one that has been refuted thoroughly by the medical community (http://www.immunize.org/catg.d/p4026.pdf) . They feel angry. They are dealing with what they do not want to deal with, and they are profoundly disappointed in the issues that their child has. Life has thrown a curved ball, and they cope by finding someone to blame, someone outside the family, and they unleash their anger by joining the anti-vaccine community and spreading its message.

Not to elevate myself beyond the reach of anger. I have had many angry moments, moments where I felt trapped by having to care for this medically complicated person. I gave up a career in nuclear physics research, I was much removed (for a season) from my three older kids because I had to take care of Ben, and now that Ben is an adult, there are still times where I fear the future in terms of how I am going to manage to work and have Ben in adequate care that I can spend my 40-50 hours per week on my job.  When things go ‘wrong’… like chromosomes divide incorrectly and a child is born with a ‘syndrome’, there are a host of feelings to deal with: anger, fear, frustration are the chief ones, and we parents of these kids are changed forever as we deal with those emotions through the rest of our lives and through the rest of our children’s lives.

Many of my friends have become advocates for special needs and sit on councils and in committees, or get jobs in  the special needs care  industry. They know every law, everything their kiddo is entitled to and they are super resource centers for new parents and ignorant parents like myself.

Breaking Free

When Ben “finally” got better—somewhere around 2003 when he turned seven, we happened to move to Colorado. I saw this as my big break. I wanted out of Medical-ville SO BADLY. And since I was leaving behind Dr. Page, Dr. Loker, Teresa the audiologist, Jan our nutritionist, so say nothing of Dr. Sommers, and the whole cleft team at C. S. Motts. Since I was going to a place where nurses would not fight over who got Ben, to a place where the receptionist in cardiology would not beam at me and discuss knitting with me when I walked in, I decided to redefine my life.

In Colorado we put Ben in school, and I started writing books, getting more involved with Church, and amazingly Ben’s health was super (for the most part, apart from that once a year pneumonia and that annual surgery or two). – I actually became SO IGNORANT of special needs issues as I focused on the classics, started knitting socks, and reading the Aeneid in Latin with my older kids, that when Ben turned 16 I found out that I had missed – by two years—the time to sign him up on the long wait list for adult long term Medicaid.  

HAH!! Ignorance is not always bliss.

I did not join another support group till Fall 2014, just in time to get on board with Ben’s guardianship, etc. which I have spent many other blog posts outlining. Neglect, perhaps. I needed a break. And in the meantime, I have a job now, a life, a church, friends, and I also have a corner of my life which is dedicated to special needs.  – 

My life is more balanced now.

But, life with special needs is a roller-coaster, perhaps just like the rest of life, only more severe in the ups and downs, and in the turns. There is never a day where I can just drop everything and go somewhere. I always need to find care before making plans (just like you did when your kids were under 8).   - How do we cope?  We just do -- because we have to. This is the hand God has dealt me. It is the hand I must play. Best to do it cheerfully whenever I can. (Which is -- some of the time.)

Special Needs in Worship

Ben became an acolyte in 2009, when he turned 13.

Who is here?

The word 'liturgy' means 'work of the people' and in worship we 'work as a people' in prayer and in singing God's praises. We sing, on key, off key, on beat, off beat, and somewhere between here and heaven, angels filter the noises and stream them into pure hosannas and hallelujahs. 

Some of us can already hear that pure angelic sound, the rest of us are still trying to tune our minds and hearts and bodies, so that some day, we too may be able to worship with purity of heart. 

We are easily distracted, and perhaps that is why worship services need to be so long? It takes us that long to tune in and really HEAR, not only the angels, but also God's voice.

It is easier to tune in with the middle-aged lady who sings off key, or with the dad who spends the entire service whispering answers to his three year old's loud questions. Better yet,  it is more entertaining to observe the annoyed elderly lady who is glaring at the three year old. 

Of course you may also find entertainment in observing the ten year old who is kicking your seat, or sigh at people like me who sing too loudly. Your mind may wander to  the harried wife in the back row--is her marriage falling apart, or to the young mom with the baby--is she married?

 Up in the balcony, another kid is pacing the pews. Why doesn't his mother tell him to sit down? And the squealy eighteen month old, whose mother never takes her out, no matter how loud she gets.

And then somewhere towards the left in the back is that  special needs kid, the one who always sits by the aisle, the one who absolutely cannot carry a tune, but who loudly and joyously praises God, partly with his hyper-nasal grunts, and partly with his arm motions, You see, he is pretending that he is directing the the choir from fifty feet back.

By Diane E. Berry

The Ethics of Church

How many noises is a toddler allowed to make, and at what intensity, before his father or mother or grandmother is obliged to take him out of the worship into the hallway or the cry room? And that grumpy teen who did not want to come, the one who doesn't stand when everyone else does, the one who slouches and scowls, shouldn't he be MADE to stand up out of respect?  Or what about the mother who brings cheerios for her baby, and when they leave the pew is strewn with crushed cheerios, which get under your skirt as you slide out of your pew? And did you notice the teen with the mini skirt who goes to the bathroom three times during a 90 minute service?

And then somewhere towards the left in the back is that  special needs kid, the one who always sits by the aisle ... shouldn't he be able to 1. be more quiet 2. keep his hands to himself 3. not say OH NO when he drops his hymnal 4. not push in the communion line?

Tolerance in Church

In church we are all special needs. We are all noisy, wiggly, and our behavior--no matter who we are--will annoy someone. Yes, even if you are the practically-perfect-in-every-way lady, who subtly glowers at the three year old or at the teenager -- your curse is the expectation of perfection, which in God's House -- a hospital for all souls -- is only achieved by the gift of oblivion... oblivion to all but the liturgy. That three year old and the special needs child with autism are your path to sanctification, just as you are theirs.

Special Needs in Worship 

I have been blessed by so many people in church, people who tell me that my son's enthusiastic singing of "For HIS m-uh-uh-uh-uh-ceee en DU-reth forEVer, Alle-LU-i-ah!", or that his waving his arms or the eagerness with which he rushes up to get communion is a zeal for God that inspires them to be equally single-minded and hungry for God.

Our church, as I mentioned above, is liturgical, and while I am not out to bring everyone to attend a high church liturgy at all, I will observe the following things about our particular church that enables my son to stay through the service.

Liturgies have a lot of components that repeat Sunday after Sunday, or that repeat during the liturgical year, like certain songs at Christmas, certain stuff at Easter, etc.  The standard responses at the reading of the epistle and the gospel, the sounds surrounding communion, BEN knows them forwards and backwards and he loves to sing them.

We light candles, we burn incense, we ring bells. There is motion, there is sitting still, there is standing up, there is kneeling down, there is going round and round in procession. We light candles. And then of course there is communion, anointing the sick with oil, waving palm branches, sprinkling with water, etc.  In addition to that there is also the reading of the Bible and the sermon. Those parts are a little more cerebral, but the over-all tenor of the service is that it is for the baby, the toddler, the kid, the teen, the adult, the elderly -- it is for everyone, and as such the service is varied, yet predictable, long, yet with many bright points of expectation for Ben of ... this is when we get to walk up. This is when we get to touch the robe... this is when we get the blessed bread, this is when we process out.   

Ben feels in control because there  is a clear beginning, middle, and end to the service. 

Ben knows the service better than just about anyone else. 

He knows when to say "Christ is Risen", and to respond "Indeed he is risen". He also knows that at Christmas, we say "Christ is born", and "Glorify him". And he knows that on regular days we say "Christ is in our midst", and the response is, "He is and ever shall be". 

Some people are not fond of ritual services. They fear that the meaning goes out of a ritual because it can become rote.  BUT REMEMBER THIS .... for persons like Ben, those little rituals are KEY!! 

Not only can he participate on an even level with anyone else, he actually  participates more than anyone else. And his joy in doing it, brings blessing and meaning to all around him.

At Easter, he says "Christ is risen" to everyone he meets, and it gives him great joy that they respond "Indeed he is risen!" every time!! Here is finally a conversation he can initiate and complete, and it makes him feel part of the community. 

Ben is (I am bragging) perhaps the best, calmest, most obedient and in cue acolyte. HE loves to carry the candles and help the priests, and he does it well, without distraction, because this is what he is all about -- being part of the liturgy -- the great work of the people who worship God. 

In short

In past blogs I have spoken of our difficulties with special needs in church, but I should modify that. We have had issues with Ben and other people during fellowship times.

WE have not had issues with Ben during worship times. 

Yes, there may be some who glare at him--probably are--I used to notice them and feel hurt. I don't any more, at least I try not to. When I can I turn a blind eye to folks who may be annoyed at my son. (After all, they are poor souls who struggle with distractions.) Just like I don't really hear babies screaming (I am just glad they are not mine to deal with :)). I choose to only hear from people who bless Ben, and they are many... very many. 

I never tire of hearing folks tell me how Ben's joy in the service is such an inspiration to them.   

Guardianship - today was the day

Today was the day--the big day in court. I dreaded it. Not sure why. Perhaps it is the same way that I feel guilty if I am driving down the road and the police is right behind me? Perhaps it has something to do with coming to terms with reality yet again?

Reality always hits. Often I prefer to ignore it and live in my own world -- that  slightly nicer, more pampered, and more me-centered world. 

Getting guardianship of my 18 year old multiply disabled child was another slap across the cheek, courtesy of reality.  

The journey with special needs is always one of acceptance -- acceptance of what is, of what must be -- NOT OFTEN of what we would like to see. 

So good bye Captain Kirk and the legendary Enterprise, along with his luck quotient which defies all odds. 

Good bye to what I thought I really wanted, and what I dreamed of.

Hello to reality.

When a child is born with special needs--for many of us--our first tendency is to think that we will just exert ourselves and become the super-parents who overcome all odds by sheer will power. We will press through with therapy, interventions, and SUPERIOR parenting, and our child will be the most brilliant  and accomplished child with Downs or autism or cerebral palsy that ever lived.

Then,  month after month, year after year, we are confronted with:  He didn't sit till he was 12 months. He did not walk till he was over two, he didn't get potty-trained till he was 13, he didn't speak till he was .... wait?? ... speech?? What speech??

There is wisdom, as St Francis says, in changing what we can change, accepting what we can't change, and knowing the difference.

The journey with special needs is all about figuring out that difference. Vive la difference!! But it is so hard to TELL the difference.

The difference more so comes with time, as we try, realize it's a lost cause (like speech, for Ben) and then we ACCEPT the Ben that is . And we learn to do so without sinking into depression or despair for each hurdle that we recognize as insurmountable. 

Accepting what is is hard, and after that, what is even harder is  learning to find the beauty, meaning, and depth in  our own acceptance, in our child, and in LIFE.  Then somewhere down the road, we grow beyond looking for beauty and meaning, and we learn to LOVE the life we have with our special child, in fact, we want it to be no other way than what it is. 

But it's not that simple and pretty. 

The cycle I described above of struggling, accepting, finding meaning, and finally loving WHAT IS, is a cycle we enter over and over again with each 'issue', sometimes each day, and some days each minute.  Like finding the humor on Wednesday morning when I handed Ben some DayQuil for his cold, and he swirled it around in his mouth and dramatically spit it out in the kitchen sink. Last year when he got braces, I spent MONTHS teaching him not to drink dental rinse. He GOT that part.... hallelujah... but this wasn't dental rinse... :) 

My child is disabled, multiply disabled, physically and mentally both, and he will remain so for the rest of his life. There will be no third naval officer in my string of sons, no summa cum laude Benjamin graduating from the University of Colorado. Acceptance, yes! Grief? Sometimes.  

I have known all that about Ben since I was 17 weeks pregnant when we named him while he was still in the womb. 

And yet there are days, hours, minutes, when the thought of living with an adult with special needs--and all that his care demands of me and my time and resources--feels so overwhelming and stressful and impossible, I simply do not want to dwell on it. 

There are other days, when I wake up to conquer a the real world that very much includes Ben and all his needs. In fact, on some days that world looks so bright and dazzling that I would not trade it with any of you for your most brilliant, compassionate, and accomplished young adult child.  

In short, my days are like yours, some up, some down, only my days have that 'enhanced Ben-ness' feature that I paid a little extra for. The rest of you just got the standard version. 

Today was one of those overwhelming days, as Ben and I got up and went to the local district court house to sit at the hearing where the judge was appointing me to be Ben's guardian.

You see, last September Ben turned 18, and I filed  that month the paperwork to become guardian for Ben. 

If you are near this process with your disabled child or with an elderly or incapacitated relative,  here are a few tips. And after that I will round out with my thoughts after court.

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Your State Judicial Branch should have all the paperwork online. Just Google " 'state name' Judicial Branch". 

Here is the link for Colorado Guardianship. 

Look for self help forms, click on Probate (not to be confused with 'probation'), click on 'guardianship'. There should be both papers to fill in and instructions on how to fill them in, along with an FAQ. I filled in all the pdfs online, then printed them. It was a lot of work, but it was not difficult work. 

Some people hire a lawyer. I would not recommend that. The process is easy, and it already costs about $800 total. Why add lawyer expenses unless your case is contested by someone and you need to fight?

In addition to filling in all the paperwork with the court, which took me almost a day (between filling it all in and getting it notarized and making copies), I had to do the following. 


1. Notify all interested persons  in the case with copies of all documents filed with the court.  I mailed them all at the post office with delivery confirmation.

2. Get Ben served with court papers to notify him of the impending action. 
I had to inconvenience a friend with this and that friend had to serve Ben the papers, sign to that effect and have her signature notarized at the bank. Then she had to send her signature to the court by mail. Ben had no clue what she was giving him. He took it home, and it is in a stack among his picture books. One of these days when I clean his room, I will file it somewhere. 

3. Get the primary care physician to write a letter documenting Ben's incapacities. Well, guess what? Doctors love writing those, it's so much fun. I basically sat down, listed all disabilities from emotional to physical to mental, wrote a paragraph about each. I wanted to make sure that I sounded 'doctor-like' enough, so I went to  a website to get all the proper diagnosis codes. put it in a document with doctor's name and address, and printed it. Where I was unsure of how to sound doctor-like enough,  and made an appointment. He signed after glancing over it and thanked me for doing all the work for him.

4. Pay for a court visitor to inspect you, your home, and your intentions. Ours was nice, but pricey. She charges by the hour, and she talked a lot about herself, which irritated me because she was doing it on my dime.  Other counties in Colorado don't do it by the hour, they have a flat feel, like $100, whereas I paid several hundred for her services. She wrote a good report, though.
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So this morning, Ben and I show up in court. This was his handsome outfit for the day.

We sit down, judge comes in,  we stand up again. Judge asks almost no questions (it's all in the report). I was so grateful that he did not ask me to list (as I have umpteen times before) the multiple deficits that Ben has. All that was in the report, which the judge had read ahead of time. It was pretty much a slam-dunk case, and all is done. I have my guardianship papers, and really nothing changes. We keep on living the way we already are.

Those of you who know me know that I am not often given to melancholic indulgence, but I did feel a sudden rush of sadness come over me when the process was over. The whole event, somehow, lacked a certain ceremony that might have made it feel whole or solemn. 

We walked out after saying 'bye and have a nice day' to the  judge, and it felt like ... 'so what?'  It was that institutional feeling that you have just been run through a papermill,  and Ben had just become another number among people that the state keeps its eye on. And so he is.

So, 'what now?' Well, nothing, really. Go home, proceed as always. And let's not forget to file my annual reports on Ben's birthday.

My son is 18, he has (according to the court) Down syndrome, low IQ, and significant medical needs. Based on that, he will never be an adult in his own right. He will always need someone to administer his money, provide his food and shelter, and make all his decisions for him (or most, or many, or some ...??). That someone is me. And I must accept it, find meaning in it, and learn to love it. By God's grace, I pray I do it well, compassionately, thoughtfully, and selflessly -- for Ben's sake.

And tomorrow, we will be back to normal. :)

Welcoming Persons with Special Needs in Church - Part I Youth Groups

Ben on the banks of the Severn River, USNA, 2013.

Have you ever been alone, really, really alone in a HUGE CROWD of people who are having a blast? Many persons with special needs live like this every day, feel like this, no matter where they are at, even in Church youth groups.

I have been musing for a long time on what it means for the church to include persons with special needs – or for that matter, what it REALLY means for the Church youth group to include everyone.

This is not an indictment of my church, which does as well as any other church on this issue. This is a commentary from the 'inside' to people on the outside as to a few ideas of how churches can include special needs persons in their activities without singling them out for an annual 'special needs event'. 

(Special needs events, while useful as fund raisers and for raising awareness, are in my opinion sometimes even damaging. They give people who attend a sense that they -- compared to others -- have 'done' something for special needs, but when the event is over, they, along with most everyone else at the event go home, FEELING GOOD, while persons with special needs are just as segregated and ignored as ever).

Today’s church is very segregated. We have age-segregated Sunday School, and then we have support groups for singles, for married couples, for college students, for young professionals, for young moms, for the elderly, or for those recovering from addiction, gambling, divorce, illnesses, etc. Much like businesses do it, churches ‘target’subgroups of the population and then ‘sell themselves’ to that group. That is how churches grow, by appealing to splinter groups with needs in society.

Nothing wrong with finding ways to get people to go to church, don’t get me wrong, I am all for that.

The problem with the age, ability, interest group mentality is that it often leaves out persons with special needs, who often when it is all said and done are so uniquely alone that they would comprise an interest group of ONE.

Some churches do successfully reach out to persons with special needs and do adult special needs events or youth special needs events, and that usually works for subgroups like persons with Down’s who are at about the same ability, or other persons who comprise a decent sized group, who have the same abilities roughly.

But for most developmentally young persons or adults with special needs, not only are there not enough of them at most churches to do a class or an event just for them,  more to the point, they are SO segregated most of their lives that what they really yearn for is not another once a year special needs event where they are center stage for a few minutes. They really just want to be part of a larger group. They don’t ask much; they just want to be included – i.e. recognized as human beings, the same way anyone else would.

My son, for example, LOVES to be included in everything, but because he has ‘needs’ that are … ahem… ‘special’, there are many things he cannot participate in either because they are too mentally or physically demanding and he does not have the capacity to keep up, or because they are too loud and too stimulating for his ‘autistic tendencies’. Recently he darted out of such an event at lightening speed. Something triggered him in the midst of the excitement of the young people around him --- something told him that everyone else was loud and laughing and having a good time and that he was SO not part of it, he just had to get out of there.

So what does it look like to include persons with special needs in our churches? 

1.    Less age segregation, more integration of everyone from the 90 year old with the walker to the 3 year old who can just about play Candyland with some proficiency.

2.    Center an ALL inclusive activity around

a.    Eating, and letting the person with special needs bring something he can share or serve to some of the people there.

b.    Simple dancing  (like Greek line dances) in a way that wheelchairs  or persons in chairs can feel part of too

c.    Fun singing (everone can sing)

d.    Various games, some of which anyone can play.
(Uno, Bingo, sack races, Monopoly Jr., Sorry) (Not super competitive loud games)

e.    Prayer time with candles and a quiet atmosphere

f.    throwing balls (big, soft, easy to catch balls)

g.    writing with chalk on a sidewalk

h.    baking cookies for college students far away

i.     writing cards of thank you or of encouragement.

j.    Clean up projects

k.     Raking leaves in the neighborhood

l.     Christmas caroling

m.  A simple nature walk

n.    Serving at the local food bank

o.    going to a G rated movie

And stay away from really competitive acitivities that get kids hyped and make kids who cannot keep up feel left out. Focus more on caring and compassion, on making room for those who do not ‘naturally’ fit in as well, and challenge the more gifted young persons of the congregation to ‘invent’ ways of including those who don’t naturally fit.

Make it structured (youth with limited communication skills are often lost in a group, and even more so if they perceive that everything around them is loud and chaotic).      

Try to find ways for the youths with special needs to ‘lead’ once in a while, be that showing everyone the way to where they are going, serving part of the food, or calling everyone to order with a big whistle.

Make it short enough that there is a clear end point to the activity, where youth with short endurance can leave without feeling that they were pulled out in the middle of something that everyone else got to continue in. Once they are gone,  typical youth can linger longer as they choose.

And one thing Ben’s teacher  at high school recently suggested to me: ‘front load’ the youth with special needs. I.e. tell him and his caregivers in advance what the topic for the evening is, so the caregivers can help the youth with special needs participate and feel included right from the beginning of the event. For example, if a person, like my son, communicates through a communication device, the device can be programmed in advance with 2-3 things he is going to say about the topic, so that he actually has a living chance to feel like he is talking with the rest of the group.

Youths with special needs BELONG in our churches, and if they belong, we need to make room for them. 

Making that room is difficult because it requires forethought. It is not enough simply to assert that Ben is welcome there 'any time', when the fact is that most activities are not inclusive enough for him to participate in, and also, he cannot be there without a support person to help navigate his emotional mayhem if things get loud and he does not understand what is going on.

In order for Ben to even begin to function in a group setting, we/I/the leadership have to make sure that nobody is too loud (or he runs away and hides), that we have ways of making him feel that he contributes to the group (or he will think that every time anyone laughs, they are laughing at him), and finally, I have to pick only events where there is no overt competition or hype, or he simply cannot handle the experience. (This of course means that he cannot come every time, but perhaps we can have a few events every year that are closer to his needs where he can come and join the group as an equal participant). 

Ben does best when all ages are included, that is, when the atmosphere is collective and collaborative, not competitive. And seriously, I think that is more so what the church is about than it is about competition. (IN fact, WHEN should church ever be about competition?)

I wonder, for every Ben who cannot function in a competitive environment, how many young and otherwise ‘normal’ boys and girls likewise sit and cringe because they feel left out, and frankly embarrassed at their inability to fully participate in the games and activities  that are super fast and super loud.

The Church is a house of prayer where we worship God corporately, be we young, old, big, small, able or not able. That corporate spirit should permeate every activity the church undertakes – that sense that we are all here, we are all welcome,  and there is something for all of us to do to feel part of this family. 

It is not enough for me to SAY that someone is welcome. If a person is on my doorstep and I tell him he is welcome to walk in, but I don’t gesture, open the door wide, show him a seat, and offer him, at a minimum, a drink, my actions are in fact belying my words. He is not really welcome because I have not made room for him.

 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.' Matthew 25:40

Special Needs and Worship will be the next installment.

Benjamin - the artist

Did you know that Ben is an artist?

Ben is 18 years old, and not only is he an artist, in many ways his life is a work of art. He has his own special style of dressing, his ties and bow ties, his shirts. He loves hats, It is very important to his self-expression and daily functioning that he wears the pieces he puts together, so he looks the way that he best feels expresses who he is.

His life is a mosaic, it consist of fragments--some with sharp corners-- of health, illness, ability, disability, joy, sorrow, comfort and pain. Some events on their own may not make sense, the pain is too intense, the loss too severe, but as a whole, when we step back and look at his life --- well, this piece of his, which I call the wheel of life, may express it best:

I ain't no art critic, but to me the balance of colors, the subtle pastels and the grays, the big fragments, the little pieces fit together in a beautiful whole that inspires hope with its beauty. I love this wheel and it hangs in our livingroom right next to Mirabel's Stair Case in Provence. Perhaps you can see why.

Ben's first major introduction to art in high school has come from a wonderful pottery course he has taken a couple of times at Broomfield High School:

We put tea candles in these and use them on our dining room table.

I think the fruit bowl is my favorite, handy, useful, and beautiful all at the same time.

We keep our Holy Water in this pottery basket.

Ben's own tea mug, It is huge.

Pandora's Box - so named by Nikolas Jaqua, who received this for Christmas last year.

The pinnacle of his pottery work -- Ben's teapot.

Watch the colors in this mosaic:

There is both storm and calm in this paint on canvas:

Colorful and large, water, sky, and tree. This one is in Ben's room.

Ben also took a graphic arts course:

Animals in the Arctic

The MOVIE poster, and ...Yes, he is ONE IN A MINION :)

The artist's self-portrait in quadruple.

Self-expression is extremely important for those who struggle to communicate with the mainstream of society. Ben has a strong need to express himself. Art is, perhaps, his most effective medium. He is meticulous with his art and can spend hours on details. He will not quit until it looks the way he wants it to look. Yes, he also has the frustrated artist's temperament that growls and throws his hands up in the air when the medium will not comply with his intents, but he sticks it out, and you see the result -- Beautifully done, thoughtful, detailed, meticulous, expressive pieces that bring out, not just the almost-non-verbal young man that most of the world smiles at but often ignores. Here is a deeply-feeling, compassionate, and alive human being whose works in clay, color, and on the screen give us a glimpse into an intricately artistic mind and soul.

Thank you, Ben!

The best shot of Ben, ever!!

[Michelle took the top and bottom pictures of Ben at school and sent them to me. I took the others with my iPad (next time, I will use my camera instead for higher quality)]

Autism and Down Syndrome

The special needs world is fragile, easily shattered, and it takes a tremendously strong person to weather the twists, turns, and curved balls that come with that fragility. 

You live for the most part contented, happily thinking you can conquer the world, and two seconds later--when the pharmacist looks at you and says, this medication is not covered, your son's Medicaid has been suspended, or when a care taker calls and says "I can't pick up Ben today"--panic washes over you, and you are convinced that this interminable juggle of dependent care, work, and illnesses is thoroughly beyond you, and that the Almighty's infinite wisdom failed Him, when he gave this child to you to parent.

And yet, isn't he adorable??

Then one day you wake up to an added reality. You notice that professionals, over time, more and more start hinting at you that your son "may" be on "the spectrum". 

Is he? 

Hmmmmm? 

You are a seasoned mom and you have had more diagnoses slung about you and your son than there are grains of sand on the beach. No panic there. It's just another label.

But, the seed has been planted, and you do start to  look for a few signs. 

One day you convince yourself that yes, with this and that behavior, he probably is mildly autistic, the next day because of his emphatic and mature reaction to one minor disappointment, you convince yourself that he could not POSSIBLY be autistic. 

Then the busyness of life overcomes any concern for such trifles as sticking a new label on the specimen that your son so often has become... in fact, the thought of autism, Down's, dysphagia, and the numerous medical conditions that continuously plague him... who cares?? You have other fish to fry. He needs to get in for that dental cleaning, rehab needs to fit him for new braces for his feet, you missed the orthodontic appointment because of traffic last week, and of course, you never rescheduled opthalmology when the doctor canceled the appointment because she broke her leg skiing. Also, your son needs a new glasses prescription... and wait!!!... when WAS the last time you took him to audiology and had his hearing aids serviced?

Autism --- it's a good question. 

There is no doubt in your mind that his emotional trips, every time his routine is broken, every time people laugh around him, every time certain persons go near him ... those emotional trips are time-consuming, you have no real means for curbing them or helping him cope, but you kind of got used to them, that is just him, and really, rehab, ophthalmology, orthodontics, to say nothing of that annual orthopedic Down's eval that you forgot last year... those things come first.

No, I am not a procrastinator, at least I put off thinking that I am one :), and I am fairly organized and on top of my son's diagnoses and appointments most of the time. He functions well --some of the time-- and he has severe behavioral issues at other times. SEVERE. Like the day he darted out of the house into traffic... in a rage... unstoppable. He sometimes hides from people, like at Thanksgiving when he hid in the pitch dark, behind a wood shed at a friend's house, and we had to send a search party out to look for him. 

 Autism may well be the next bend our in road. Increasingly, it feels and seems real enough. And if it is, let's just embrace it and move with it.

He has many risk factors. For example, he was born with cleft lip and palate, he has a swallowing disorder, he is hearing impaired, in short, his communication skills, both receptively and in terms of his own output are limited. He has experienced some stress and trauma in his life.  And he does have  significant repetitive motor behaviors, unusual vocalizations (usually grunting and throaty noises), feeding issues and sensory motor issues, as well as increased anxiety, irritability, severe difficulty with transitions. He has an extreme aversion to certain persons and will not even talk to them. He talks to walls and refuses to engage people or make eye contact any time there is even the smallest conflict (whether it involves him or not). And he repetitively generates calendars through 2014, 2015, 2016, 2017 for a hobby in most of his spare time.

And if it be so, if the label autistic is about to be slapped on his forehead, so be it. Whatever he is, that is him, and that is precious and worth cherishing, and if the behaviors we already live with are mildly or moderately autistic, then let us embrace the label and pray that it will lead us to discoveries that help us increase Ben's potential to live a fulfilling life and function better in the company of others.

Merry Christmas :) We're on to our next journey in life, wherever that takes us. May God go with us.

2014 with Ben

... and what a year it has been. I have had to ask Ben to promise me never to turn 18 again. (And he agreed.)

Ben is a junior in high school, an accomplished artist, both in graphic arts and in pottery. He loves to hate the frustrations of bowling without bumpers, he adores his iPad 4--especially its movie feature, and this year he fell in love with Despicable Me I and II and the Minions that go with it. 

So much of what went into Ben turning 18 was 'about' Ben, and about the services he is to receive, first as a young adult (18-21) but also about life long services and service levels that were established in the multiple meetings that he and I attended in order to determine which services he qualified for.

What was hard about the process, apart from the tiresome felling running a metaphorical marathon in chilled molasses, were the meetings that involved Ben. On four different occasions we met with persons from the county long-term disability intake people (IMAGINE!), the court visitor, and the social security administration, essentially to establish what Ben CANNOT do,  I understand the deficit model is a vehicle for establishing needs and subsequent services, but I regret Ben having to listen to a long line of questioning which one of necessity must answer as if it were the worst day of Ben's life in order to establish a life-time service level that will adequately meet his needs, even on the worst day of his life. 

Looking back, I should have brought ear buds and iPad (with movie + games) to the four intake interviews, so he would not have to sit and listen to litany after litany of what he cannot adequately do. I caught up to that fact at the last interview with the court visitor.

At each interview, he was required to be present, and since they were in close succession during the fall, I had a significant amount of emotional fall out to deal with from Ben after each process. 

Ben is generally "happy" exactly in the sense that we, the public, like to think about Down syndrome happiness. However, that general 'happiness' is surface and good social skills combined. It is difficult to have Down syndrome and know you are different, and to hear the deficit model applied to who you are and what you can do and how you are when you are at your very worst behavior, at your least competent moment, and to hear it over and over again in 2 to 3 hour long meetings, discussed every time by your mom and two or three other professionals, some of whom you know from school can be crushing. 

That being lamented, we succeeded in securing long term care Medicaid services for Ben, both in terms of respite care after school and also in terms of day programs for the summer and for when Ben is done with school. Many triumphs came out of the August - December seemingly endless process of wading through state and federal services for Ben long term. Ben was a Level 6 (the highest in the state) in terms of his needs assessment, and he is awarded $36,000 of respite, day program, and behavioral health services per year towards meeting his needs.

Instead of me spending out of pocket cash to secure after school services for Ben so I can finish up at work, he will now be in Out and About as soon as their waiting list dwindles down, and that group takes persons with intellectual disabilities 'out and about' in the afternoons after school, to swimming, art, theatre, and bowling.

He will also be in FRIENDS OF BROOMFIELD during the summer for a 9-3 day program where he can take Access-a-Ride  (public bus for special needs) to the day program, so he will get a sense of independence in going on his own and coming home on his own. 

At any rate, the end of a long semester, and  I have a significant part of the year of turning 18 moving in the right direction. 

I look to 2015 to 
1. finalize his SSI and actually getting that income for him
2. getting a court date and finishing my case to get guardianship for him
3. getting off the waitlist for Out and About and having those neat afternoon experiences for him after school
4. getting a comprehensive eval of Ben and the autistic spectrum issues.

Merry Christmas :)