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Right Before Sleep

I lie in bed trying to relax so I can sleep. I start to think of things. Things that might help you. Things we have gone through that might even be pertinent to you and your family member with autism.

I don’t know. Maybe this is just an exercise in feeling important. We’ve all had some pretty rough times with autism. But then we’ve had some good times. Some hilarious times. Some blood-curdling times, for sure….but there has been good too.

Anyone can remember the nightmares – the embarrassing behavior or the scary stuff you’d never dream you’d see.

Parents remember the little moments – and that’s the beauty of parents. We look for the tiny things in the everyday routine we live in. The time my son put his hand in mine going to the school van for the first time (after 5 years of wishing he would let me just hold his hand). You’d cry when you felt that little hand take yours, wouldn’t you? I did.

The first time your child spoke, after the too-typical language delay so many of our kids have. Maybe the first hug, or the first time your child noticed you were sad, and leaned in to comfort you. We all have little moments that are gifts from our children.

How many of us have children with autism? According to the CDC, a lot. Here in NJ, 1 in 34 boys have autism. That means at least 2 parents per child, doesn’t it?…although I know many of us have more than 1 child on the spectrum. Some of us are on the spectrum ourselves, or are married to someone who is.

We’re so busy. We work so hard to keep our acts together and get it all done, plus do everything we can extra for our ASD child(ren) (because which of us would leave a stone unturned for them?). We struggle with our marriages, our parents and in-laws, our other children, our neighbors, our educators, and pretty much ignore our own needs so we can get it all done. Falling apart? Me too.

I know mothers of children my son went to school with, but that’s it. None of us have time to form support groups or call each other…and now with the virus, getting together is not on the agenda. But parents of children who have autism are our people. They know us without knowing us. They are us. It is essential that we connect, somehow.

Each of us has experiences to share. I could write down my experiences with my son – that’s what I think about before I go to sleep. I reach under my bed for the clipboard, prop myself up on pillows, and I write this…because some of it might help you. And even though every person with autism is different, you may not have the chance to hear from another parent who has a child with autism, except maybe it’ll be me. You can read this, take what helps and leave the rest. I won’t judge you, I won’t even know you – but maybe something will help even a little. That’s a very good reason to write here, I think. If I can be of service to you, then I’m glad.

I know, I know…

I’ve written some about services and state departments here in NJ. I’ve written about the shocking lack of service agencies, and funding. Generally I carry a grudge rather than a spark of hope. But I’ve decided to cut to the heart of it:

It doesn’t matter what state or county you live in. It doesn’t matter if your family understands you, or what your priorities are for your child with autism. The funding will change, the staff will change (and rapidly, which is always disappointing but the pay is so poor and the work is hard), the elected officials will change. Everything changes. Only our job as parents will not change. Our role as advocate, as caregiver, as supervisor, as expert on our child(ren) – that will not change.

What does matter is how hard we love. Can we love hard enough to make a difference in our kids’ lives? Can we take on the tough situations? Can we begin to understand that any change for our kids may be seriously difficult, even excruciating for them to grow? to learn skills? Face it, they would’ve developed every day life skills if they could. But being autistic just negates the learning that could take place easily. So am I determined enough to look past my son crying (and not giving in to him) as he learns that things get lost? And let him know that it will be ok, and that he will be ok? Or do I live in his fear and make myself crazy keeping everything happy? Piling on reward after reward, distraction after distraction, treat after treat until the natural consequences are lost in the happy bubble I’ve created…all because I can’t stand for him to be unhappy?

Do you want to know what I wish (sometimes)? IF not, stop reading right now. If you want to know, ok, read on but don’t judge me. We’re in the same boat, remember; the same club.

I wish that parents of autistic children – who love them, who justify all their behaviors, and justify not trying to change the negative behaviors, and justify all the food they let them eat, bad food choices, bad play choices, bad choices in many more ways – I wish they could go to a group home to see what some adults with autism become. So many skills could’ve been learned, so many difficult behaviors modified, healthier and happier, maybe. We were afraid of making them mad, of taking things away and upsetting them, of doing the exhausting work of changing destructive eating habits and aggressive behavior. It was all too much, and anyway a big part of the autism community says they deserve the right to make these choices for themselves. As though all of them could. Some can. But my son is still a child, an adult child – and we would be bad parents if we did not remember the intellectual ability that makes him so.

If you want to be a better parent of an autistic child, pay attention to the world of the autistic adult. Your role will never change. Others in their life will come and go, but not you. Are you up for it?

Just Imagine

Just imagine having a common mental illness. Maybe anxiety. Maybe depression.

How about bipolar, any type you want. Rapid cycling, or slow cycling.

These run in my family, both sides. Some of us are diagnosed, some undiagnosed.

Panic disorder. Don’t forget Borderline Personality disorder. and my all time favorite – OCD.

Now imagine you have autism. You are verbal, but have an intellectual disability as well as expressive and receptive language delays. You cannot reasonably have a functional awareness that you even have mental problems….nor can you express what your discomforts are…what is bothering you. What upsets you. What makes you want to hurt people, or yourself. What makes you want to stop living.

I would venture to say that many individuals with autism have mental illness…and how can we even begin to know what they are? We focus on the autism, because that by itself is overwhelming. Then puberty happens, and it all goes to hell. Emotional issues appear, accompanied by difficult, disruptive or even intolerable behaviors. Aggression turns to violence – against others, against themselves – and you discover that there are virtually no services to help. (Cue the bold font:) No services to help.

When I say ‘no services’, what I mean is you can call the police. Yes, calling 911 is a service…of sorts. Does it help? Your adult child with autism might calm down for the time being. Or – they might get taken to the emergency room at your local hospital, subjected to blood tests for drugs, restrained, or just sent home. Maybe jailed, if they don’t calm down for the police.

Are any of these potential actions helpful? Not really. Chances are 99% that aggressive behavior will happen again, and again, over years. Law enforcement is a bandaid approach to a common problem with adult children who have autism. Would you keep on calling an ambulance for your child with a chronic illness? No, you wouldn’t. You would talk to your adult child’s doctor, get a referral to a specialist, and look to medication, or surgery, therapies, lifestyle changes or additions, etc. You would broaden your search for help to address your child’s illness in every way possible, wouldn’t you?

That’s not possible with a significant mental illness that causes behavioral problems. Augh, I get so upset even thinking about this. So tired of this. It’s a problem with no solution in sight, unless medical experts and facilities start seeing individuals with autism as people. As humans. Deserving of treatment. Until then, our families will remain isolated in our struggle to help our kids to get help. Everyone deserves help, don’t they?

Call your elected officials. Tell them you are living with aggression and violence because your state does not serve and protect all its citizens. Be heard.

Imagine…

Just imagine you have anxiety, depression…even bi-polar disorder. Imagine all your life you have been anxious, had periods of depression to the point of self-harm, or anorexic. Your family never noticed the red-flags. Or maybe they did, but were embarrassed. Or were just plain exhausted by your “drama”.

As an adult, getting help became imperative because you had kids and were scared of possibly hurting them during one of the outbursts you were having (during stressful times). Later on in life you discovered alcohol as a self-medication. And when you stopped drinking, self-injury re-appeared with a vengeance.

Now………..imagine you are a person with an intellectual disorder, autism, OCD, receptive, expressive and pragmatic language delays…..

AND mental illness. How in the hell will you cope?

I am a neuro-typical, educated woman with advantages, finances, and peer support. While I am grateful to have survived my own life, I can’t help thinking what is in the future for my son. He has autism, DD/ID, language delays, OCD, anxiety, is impulsive and quick to anger. I’m wondering – if I handled my mental illness so badly yet was so much more equipped to do so, how in the world will he manage? How will the people who end up caring for him handle it? will they handle it?…

What do you need?

I mean, as a parent. What do you need, in order to parent your child with autism?

Our needs as parents can change. When my son was little and I knew he was developmentally delayed (and a little voice inside me was saying “psst – it might be autism”), I just wanted a diagnosis. When he was finally diagnosed as having autism (PDD-nos back then), there was relief and then a direction for me to pursue. That was when our journey officially began.

Next, my need became techniques: 1) behavioral techniques, 2) facilitating language techniques, 3) daily living skill techniques.

His teachers and therapists seemed to have it all together – they knew how to handle him, and how to teach him. I wanted in on that. I never gained the confidence they had during his early years, but I learned alot from them. How to make and follow a daily visual schedule. How to choose a reinforcer, and how to give it. How to choose my battles.

After that, my need became how to stop slamming myself for all the things I did wrong. Even the phrase “things I did wrong” is wrong. I did what I could, as best I could, and I’m glad for that. My heart was always in the right place. I have 3 daughters; 2 older than John and 1 younger. There was never enough time in the day to meet everyone’s needs, and the fact is that his disability put his needs first much of the time. I have learned to minimize the regret that I wasn’t there for each of them 100% of the time. My relationship with my husband was eroded too – I was a Mother back then, and being a Wife took a back seat. Yep, I put being a Wife all the way back in the trunk. I took over John’s educational needs, went to every iep meeting, covered all the communication with school and therapy – and didn’t include my husband until John was in high school. Is that a regret? Oh yeah. I was on an Amazing Mom roll that lasted years – being the only one who was perfect enough to handle all John’s needs. More regrets – and regrets are toxic.

When John went from middle school to high school, my need was to become a prominent member of his child study team so as to make sure he got a functional education. Enough of academics!! My son (and most of his peers) will hopefully find work, not go to college. Does he have work skills? Can he follow directions- verbal and written? Why isn’t he getting social skills? Many parents scrutinized the high school’s questionable special services curriculums – and demanded appropriate classes based on what other districts offered. When enough parents demanded, changes did happen. A work-readiness program was created, with job-sampling and job coaches, and a wonderful and productive relationship between this program and our community began.

My need when John graduated from highschool at age 21 – was to take everything I’ve learned from teachers, therapists, physicians, and parents, and become John’s coordinator/advocate of his adult life. Which is really what every parent does anyway, from the time her child is small. But now my new ‘job’ was serious and I was on my own – I didn’t have the schools to work with. I didn’t have the concept of “he’s just a kid, that behavior is forgivable” to fly under anymore. There were no more parent presentations and meetings where I could see other parents and vent or get help. Suddenly I was terrified. I needed to take over facilitating his life and I had no clue how.

Remember the old adage “Ignorance is bliss?” Life after John graduated was not exactly blissful, but it wasn’t as scary as it would become later ….because I was ignorant as to what the state could provide for him. Representatives from the Dept of Human Services and DDD (Division of Developmentally Delayed) go around the state and speak about adult life – and what they offer. It’s very complicated, and funding and programs may change based on who is in office, but they make it sound like your adult child’s life will be productive and fulfilling. They tell you in monotonous tones that funding is available, staff is plentiful, and all will be well. Each family of special needs adults is assigned a Support Coordinator (SC), which is like your child’s old case manager from his school days. SCs know what services are in your community, and they help you ‘purchase’ those services with your child’s state budget. “There now. It’s all taken care of ,” says the state of NJ. “Go to sleep and when you wake up, the dawn will be rosy and your adult child’s life will be a happy one.”

What they didn’t say was “Don’t call us, and don’t complain. If you do, we won’t pay attention to you anyway.”

The MOMS

The Moms have existed ever since we started meeting each other at special ed school presentations. First we were friends – mainly because our kids were classmates. Let’s face it, our special needs children didn’t have lots of friends. They weren’t inundated with sleep-overs or birthday party invitations. We were puzzled, embarrassed, and increasingly frustrated as we struggled to learn enough about our kids’ disabilities to function as competent parents. Remember the stages of grief people go through when they lose a loved one? Parents of special needs children go through similar stages, although we don’t usually get to the ‘acceptance’ stage for many years…instead we bounce back and forth from the ‘anger’ to the ‘denial’ to the ‘grieving’ stage and back again, over and over. It’s exhausting.

The only ones going through this same process are other parents in the same situation. It could be either moms or dads. In this case, it’s been moms, but please don’t think I’m discriminating against dads.

What the Moms Accomplished First:

So we met at parent meetings and presentations, exchanged phone numbers, and began to forge friendships when our kids were little. At one point we became organized enough to choose a name for our group (and I can’t remember it), but we were sharing information with each other about our own experiences with our special needs kids. Best doctors, best haircutters, dentists, parks, restaurants, you know. We started going out to the movie theatres – our kids all in one row and the Moms in a row or 2 behind them. Enough for them to have social space with their friends and for us to chat with each other. We visited a planetarium, restaurants, and saw local theatre. One family generously had a Halloween party every year for the kids and their families. That same family had a rocking New Years Eve Party yearly too. The Moms went out to dinner over the years, just us. Sure there were smaller factions within the Moms, but that’s OK. When the oldest kids graduated at age 21 from high school, those mothers noticed they were having social withdrawal. This should be something every parent expects for their special needs kids at that age. We saw them experience depression, increased anxiety, and anger. As those same mothers attempted to manuver in the DDD system and get their adult children services that would both help them with employment and keep them socially-connected with others, they realized the system the state of NJ had set up was inadequate. It was time for a reality check.

“What would they want? our kids…what would they want to be doing for fun?”

We asked ourselves this question. Often. But if you know any mothers of kids with special needs, you know they are creative and persistent (pushy? definitely. driven? -for sure. Desperate? -often). We all had these qualities in common. OK…some ground rules for starting stuff on your own:

If you want to start something, you need to find a space, someone to run it, helpers, and materials. And your adult children have to buy into it too. Of course they do, because they’re the point of this whole endeavor.

Our first activity was Art Class. We found a space for free, bought the materials ourselves, and found a sweetheart of a high schooler to run the class. She brought a few friends to help. There were between 8 and 14 participants each time. While music played, our kids followed directions to create arts and crafts and chat and joke and see friends they had in school but now had no way to hang out with. The highschoolers became their friends too – which was perfect because our kids didn’t want their moms running things for them anymore. The Moms got something out of this too. We sat away from the art class and talked. Vented. Shared the good and the not-so-good. This was a big success for both our kids and the Moms. We saw with our own eyes how much our kids loved to see each other. It inspired us to come up with other activities.

The next idea was a Book Club. My son reads at a 2nd grade level, and we are pretty sure he is dyslexic so I wasn’t too enthusiastic about this one. The mom who had this idea knew that several of the adult children who might want to do this also had reading/comprehension difficulties, so she had a brilliant idea: read the book while listening to it being read on CD. We chose the first Harry Potter book, and she played Jim Dale reading it on CD while the kids followed along in their books. Our site was the county library – and they were happy to give our group a space for their book club (how many kids read anymore? although school was over for them, our adult children still needed the practice reading, otherwise they would likely lose skills they had worked hard for in school). At the rate of a chapter per meeting, twice a month, it took us a year to finish the book. At the Harry Potter party, we watched the movie of the book they had just read and celebrated all things Harry Potter. They went on to read the second Harry Potter book, and then the Princess Bride. We didn’t have a CD for the last book, so we moms took turns reading. Weeeeeell, definitely not as professional as Jim Dale, but we did a darned good job. For this activity we had between 5 and 8 participants mainly because the room was small and 2-3 moms sat in to help. Oh, and a librarian kept shushing us when there were lively discussions, so if you do this, keep the noise down!

The beautiful thing about Moms is that there is no judgement when we’re together. We know that every mom does things differently – makes different choices, has different rules and different expectations for their children (whether child or adult). You have no reason to be embarrassed if your adult child is rude or silly. You just handle it with your kid and continue on. Moms are direct when they see something wrong, and they are forgiving. Moms have been and still are some of my closest friends. Moms will get you through the worst. Moms will have ideas you never thought of. Moms usually know someone you can call for help for a specific problem. Moms have been there. Moms live where you live – in the world of special needs.

How have you been? Let’s Update!

I found this blog I had started 5 years ago – today. I had been considering writing a book about my son’s journey (and our’s too) in his life as a person with autism and intellectual impairment…because every time I visit the local library (weekly) I look for books about autism. Text books. Bios. Parenting. Educational. Adult life. I’m disappointed every time. I saw a book last week by a neurologist parent and his theories about his autistic child, but doctors have many advantages the typical family doesn’t have. So…not very applicable for the regular parent with a regular income…and certainly not applicable for a single/impoverished parent.

Why is this? Autism is more prevalent than ever, based on CDC numbers. Maybe more info on autism is online?

I said I wanted to catch you up on how John has been. I last wrote when he was 21, he was done with high school, and had been attempting to enter the adult world. Yeah, attempting is the right word here, because it isn’t a rite of passage – it’s a torturous horror show. The state offers sparse funding to help with employment and the training that must go with it – little-to-no transportation to the training/job, and few employers out there who even know what disabilities are. Agencies that can help in these areas are understaffed and have a high rate of turnover (as do all areas of people who work with those who are disabled). Layer on top of that the fact that services for the disabled are not available with parity. Areas with higher populations (cities) likely have more services – suburban and urban areas have less, and rural areas (the worst) have the least services. I didn’t know that the state had no responsibility in making sure all areas of our state have equal opportunities and agencies for our disabled family members adult lives. Does that surprise you? It sure surprised me. I was so shocked that some towns have totally different services than our area does – that I called the head of DDD and told her she needed to up her game. Sign on more agencies. Provide incentives so that more services could be offered to those with disabilities. She told me directly that that is the parents’ responsibility to recruit them, not her’s . Yes, the DDD will post a directory of all the service agencies that accept medicaid online, but those service agencies are random based on areas. In other words, Town ABC has music lessons that are covered by Medicaid, but our town doesn’t. Is that DDS’s fault? They say no. At the time the head of DDD told me this (in a tone that reflected how uninterested she was in that conversation), I was devastated. If the head of the Division of Developmental Disabilities of the State of New Jersey was overseeing a system that didn’t provide fair and equally-distributed services for people who are already sorely disadvantaged…then WTF?

It’s 5 years later now. John is 26. I’m 63 and my husband is 76. It’s frightening how quickly times passes, although there were a few years that went very slowly and very badly. When John was 21, I had started drinking…after a few months, I was drinking every day. Then I was drinking from the morning till dinner time. I ended up going to counseling, starting with alcohol treatment. It’s been 3 years without drinking. It’s all good.

What I’ve learned over the past 5 years is that there is little the state can/will do for your adult child with DD/ID (developmental disabilities/intellectual disabilities). There is some $$ that the state may provide in your adult child’s budget that they can use to pay for medicaid-approved services only.

Services may include: -day program

-transportation

-lessons (music, dance, cooking, computer, horse-back riding, fitness)

-job coach

-DSP (Direct Support Professional)

There are other things that may be covered, depending on what is offered in your area. Since in NJ our adult children with DD/ID all must have a Support Coordinator (like a case manager), that person is the one who helps you find what you want for your child, or what your child wants.

When John turned 21, we wanted him to have a job, but we also saw that he badly needed a way to see his friends again, in a supported setting. Doing productive things. The mothers started to get ideas. One mom floated the idea of a Book Club. She as willing to run it and we helped. Another mom wanted an art class – we found a high school senior to run it and we provided the materials. That wasn’t the end of our planned activities – but you may be wondering how we did this. Are you? See next installment of blog https://wordpress.com/post/parentingautismweb.wordpress.com/400

Old Journal Entry

Back in January 2003…

“Taking a big kid to the bathroom, getting him up from a dead sleep to sleepwalk down the hall to the toilet is quite a trick.  The child is large (John was 9).  You fall into a patterned walk – he steps, you step with him.  If he falls, he’s gonna pull you down with him, he’s that big.  Way too big to carry.  It crosses your mind that you may be doing this for a long time.   Years.   A life time.  You worry about who will do it when you’re dead.  Thinking in terms of a life time brings you down to reality quickly  and takes matters out of your control.

The Life Time theme is for adults only.  Not for the faint of heart.  You can’t be wimpy when dealing in life times.  You are allowed to be scared shitless and depressed as hell, but as long as you’re determined and committed it’s ok…and by the way, no extenuating circumstances.  No excused absences.  No excuses period.   You are on shift for a life time until you die.”

I had forgotten about this ritual.  John would wet the bed unless we took him to the bathroom around 11 pm every night.  He wore pull-ups during the time of this entry, but he would pee so much that the bed would still get wet.  Later on, as he got older and the diapers got more expensive, we tried to work towards him really waking up fully and going to the bathroom by himself, but he was too heavy a sleeper.  For years we stayed up late so we could take him.  He grew taller and it was a struggle keeping him from bumping into the walls, or catching his feet in the railings.  Michael and I were so tired.

Yesterday, I met with 3 friends – all mothers of special needs adult children.  We  still feel the same;  we cannot die.  Who will do what we do?  Who will know what our children need?  Who will give what we give, unconditionally?

Invisible Relationships

Disabilities and politics.    There IS a connection.  I see it more and more now.

There are no service agencies in our area…this is a major problem for adults with disabilities.  They sit home all day, remain dependent on their parents, and have nothing to do.

My step one:  call DDD (Division of Developmental Disabilities) and complain

step two:   call DHS (Dept of Human Services) and complain

Nothing happens.  The people I talk to know nothing about what is happening.  The people I talk to can’t answer my questions.  They tell me to give it time.  They tell me that services are out there – look harder.  They tell me it’s a good program, be grateful.

Grrrrrrr.   Now what?  Who to call?  Who are my advocates?

I attend an open meeting at the state house in Trenton – we each have 3 minutes to’testify’ for issues that concern us about the state services for adults with DD/ID (developmental disabilities/intellectual disabilities).  Most, if not all are there to speak their minds about the dismal pay scale for DSPs (direct support professionals).  I am too.

A DSP is the KEY to many adults having a life.  A DSP can drive John somewhere, stay with him as he a) shops, b) volunteers, c) hikes, d) takes a class, e) eats at a restaurant, f) meets friends for leisure activities…a DSP can get your adult child into the community and mentor him as he does the things he likes to do, either on his own or with peers.

DSPs at this time, in NJ, get paid between 10 and 15 dollars an hour.  It’s PT work, with no benefits, and it’s not always easy depending on our adult children and their needs.  Many agencies that I spoke with this past month pay their DSPs $10 – 13 per hour.  It’s not a living wage.  It isn’t just.

Many of the people and agencies (mostly non-profits) at this open forum spoke passionately about how important DSPs are – and how difficult – nearly impossible- it is to hire one.  And usually when you hire one (if all your stars align), the DSP moves on because who can support a family on that income?

In my 3 minutes, I begged.  Even if I had been allotted 300 minutes, and could explain the CDC numbers for autism, and the paucity of other services and the hurdle of no transportation, I would’ve still ended up in the same place – pleading for my son and for all our disabled children.  Because it doesn’t matter who I call or complain to or thank.  It’s the people who make the budgets (state and federal) who are key.  That’s why, I know now, there is no help to be had at the state dept level – once the budget is set, it wouldn’t matter if the sky fell…there would still be inadequate money to distribute for services.

And the people who set the budgets are politicians.