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Julian's Mom

Parenting & Family > Motherhood > The Ghetto
 

The Ghetto

The trouble with returning to a blog site after a long absence is that one really doesn't know where to start. To go back to where we left off would have us sitting here for ages and would likely be rather boring to read. And yet, it's hard to launch into the day to day happenings without some kind of back story, no?

Plus, I can't think of a good title.

But with a mug of coffee by my side and a bowlful of oatmeal on the other and a bit of time on my side for a change while Julian adjusts to the change in the programming schedule on Treehouse, I hope to somehow find my way again.

Clearly, I've spent far too much time *talking* these last few months and not nearly enough time writing. I'm rusty. I mean, I can *always* think of a title!

As I mentioned in my last blog post (which I don't even remember writing! I mean, I remember being at my parents' house for Olivia's tenth birthday party but I don't remember writing anything here. I must have been half asleep or something...), the kids and I moved. And then we moved again. And Dog help me, that's gotta be the last time for a long, long while.

The first spot we moved to can only be referred to one way.

It was the ghetto.

I had applied for what we call "Rent Geared To Income Housing" (aka, THE GHETTO) a little over a year ago when the country house I was living in started to fall apart and we waited and waited. And waited. Every time the phone rang that summer, we shit ourselves. We passed by one of the complexes (aka, THE GHETTO) and tried to pyschically empty one of the units. We dreamed about when we would get the call, how many bedrooms our new house would have, how great it would be to get rid of the SUV (shut up about the carbon footprint, the fucker is paid for, okay?) and be able to walk everywhere.

Then we kinda gave up and forgot about it.

Until this past Spring when that call surprised all four of us, offering us a three bedroom unit in the most recognized complex (aka, THE GHETTO) in town. We had one day to decide if we wanted it, sight unseen and ten days to move in.

We took it.

And everything quickly fell apart.

Turns out every stereotype I had grown up believing about the place were TRUE! Well, maybe not every one. I met a few decent people and even made a very good friend but for the most part, our summer in the ghetto was as hot and as painful as I hear Hell is supposed to be.

For starters, the transition was exceptionally, well, hellish, for Julian. I watched him lose all of his words and resort once again to screaming, crying and head banging as his only means of communication. Let me tell you, it was terrifying to watch years of progress and work unravel in just a few days, knowing that there was little I could do to bring him back.

He stopped sleeping. And he already didn't sleep much as it was.

He gave up eating and lost about five or six pounds and I'm sure I don't have to tell you that the kid doesn't have five or six pounds to lose. He's four and a half and is the size of a tall two year old. At his best, he weighs thirty two to thirty three pounds. After our move, his weight plummeted to the mid twenties. I supplemented his diet with Pediasure until I couldn't afford it (it's wickedly expensive especially when a child is subsisting on the stuff) and made a dire mistake by buying the powder version. It was a lot cheaper but still had the same nutritional make up as the bottled stuff.

Yeah. He wouldn't drink it. At all. In fact, rather than drink it, he freaked out and stopped drinking any Pediasure at all. Which means he was living on apple juice. I came close to taking him in to the hospital but I knew there wasn't much point. He was drinking and wasn't dehydrated and further traumatizing the child with IV sustenance would only make the transition to a new house more painful and difficult.

In short, I was really scared of losing him to that autistic hole for *good*.

Weeks passed, the girls made friends in the neighbourhood, I set up the tiny house I had been assigned and learned the nuances of the community (pajamas *all* day, everyone smokes, nobody watches their own children, etc.) and still Julian got worse.

In addition to not sleeping and not eating, he became very, very violent. This is one of the times that his small size is a sort of blessing because he can only do so much damage with such a tiny frame and muscles that are often sore from dyspraxia. Yet, I was covered in blue and black bruises, bite marks and bloody scabs from the spots his fingernails attacked me. It was almost impossible to figure out what the trigger was...the ghetto is a noisy place full of people... and even when the trigger was discovered, it was even more impossible to eliminate it. Like I said, the ghetto is a noisy place full of people.

He developed a plethora of new autistic traits and stims (self stimulatory behaviours) like hand flapping in addition to his spinning and strange finger movements and a healthy dose of rocking, to boot. It goes without saying that he was exceptionally sefl injurious. His fingers were always in either a state of healing or bleeding from his chewing on them.

During his "naps" (ie. when he passed out from sheer exhaustion) I passed on sleep for myself and instead read everything I could my hands on, from textbooks for psychology students to occupational therapy manuals to a book of essays written by other parents of children on the spectrum. I seemed, always, to return to Temple Grandin's, "Thinking In Pictures" and with a highlighter in hand, I began a search for ways to help him, much the way I did when he was first identified.

When I wasn't reading and highlighting, I was making notes of things I had tried back when Julian was two and the word "autism" had first been uttered by a doctor. I reflected on the things I had tried and made notes of what had worked and what had bombed.

I went back to square one with him. I took everything back to ground zero, allowing him to undo all he had accomplished in two years in the hopes that it would pave the road back to functioning.

Thankfully, it was a chilly spring and he wasn't overheating in the long johns (tight, to feed the proprioceptive sense and inside out so that they were soft enough not to further overload an already maxed out tactile sense). I was scared of summer's arrival, not knowing what he would be able to wear.

I bought him gum to chew, although his fingers were still his preferred choice, I imagine because he *wanted* to feel pain so that he could feel, in some way, grounded.

I bought a second hand bed from a friends and created a nest. I bought more air fresheners than I ever thought possible and allowed him to fill the small house with artificial scent.

Picture boards and sign language.

Ice cream. Vanilla. No pieces.

I started giving him a small dose of Tylenol before bed, not to drug him but because I realized, all too late for my liking, that I was only looking at the Autism side of his disability and that his behaviours were likely also stemming from the lower extremity dyspraxia. Our new house had stairs and his legs and trunk muscles were maxed out and he was in pain with no means of communicating it to me.

I bought a stroller and was actually grateful for his inability to toilet train. At least he didn't have to climb the stairs to use the toilet. I have never been so thankful for diapers.

I'd like to say that I was successful and I got my little boy back, but while he *did* make a lot of progress, the tricks were no match for the ghetto.

Julian had lost his safe haven. He had lost his home. Before, I could get him through whatever transitions we needed to conquer because he was going back to his quiet, safe space.

Now his home was a battlefield, a constant barrage of noises and unfamiliarity with no predictability whatsoever. Knocks on the door from kids in the neighbourhood. Work being done on the exterior of the house. Drug users screaming in the night, banging on the door of their dealers. Couples fighting in the rows, yells of "BITCH! CUNT! ASSHOLE!" like bullets in the night.

Car tires screaching.

Glass smashing.

Kids crying.

Parents yelling.

Summer came and I put the girls in day camp. They were able to be with their new friends and they were having organized, supervised fun every week day. We left as much as possible on the weekends, spending way too much money just trying to get stay out of the ghetto for as long as possible.

Julian started to speak little by little, mostly echolalia in the beginning but we were more often than not able to decipher what he wanted to express through his memorized and strange language.

The stims stayed.

So did the violence.

He started to tolerate some touch...enough to engage in some sensory games, at least.

He fell in love with swinging. I would take him and his sisters to the splash park (it was free and *genius*. Safe water play with no risk of drowning so I could focus on Julian and still let the girls have fun) and while the girls danced in the falling water with other neurotypical children, I put Julian in the baby swing and pushed him gently, making sure not to touch his body. His head would loll back, his eyes rolling back into his head and he would make happy nonsense noises for as long as his turn would allow him.

His sense of sound, which had always been hyperacute, flew off the scale. He stopped being able to tolerate any music (always one of his favourite things) and normal conversation became impossible for him to stand. One of his first words this summer was, "WHISPER!" and it was always followed by his hands over his ears and crying.

He started to eat some. Watermelon. Strawberries. Occasional slices of cheese or bologna. He drank vanilla rice milk by the carton.

His asthma got worse. He needed his puffer more than he had ever needed it. He worked himself up to an attack on an almost daily basis and actually asked for puffer.

He developed extreme anxiety. He became fearful of all sorts of things. We had a few wicked thunder and lightning storms and he started to alternately live under pillows in his next and under the kitchen table.

I wondered if I should call the Child Development Centre in Kingston to book an appointment with Dr. Smith.

I stopped sleeping and spent most of my time reading and taking to other people about what was going on.

I spent a lot of time crying.

On the rare weekends the kids went to sleep over at their Gramma's with their Dad, I crashed.

So did Julian.

We *had* to get out of the ghetto.

I met a few other parents of autistic children in my community. To say that we weren't like minded is putting it lightly. Their children were either medicated to the hilt (and for the record, I'm not against medication. I just don't thinkit's a cure-all and I don't want a zombie for a son as these parents joked they had) or allowed to completely self isolate, non verbal and literally foaming at the mouth.

There was no two ways around it.

The ghetto was no place to raise a child on the spectrum.

And then I got an offer that seemed too good to be true.

posted on Sept 12, 2011 7:34 AM ()

Comments:

comment by catdancer on Sept 18, 2011 5:32 PM ()
Okay, come on, continue the story!! You write so beautifully that I think you could get a book out of this blog. Seriously. Consider it.
comment by crazylife on Sept 13, 2011 10:17 PM ()
I will....
reply by juliansmom on Sept 14, 2011 6:21 AM ()
That is it in a nutshell. We can do what we have to do. As I see my autistic grandson who is twenty rocking away in his rocking chair, sometimes
getting violent...he is now twenty...I am wondering how my daughter
holds up. I talked at length with a man who has an autistic brother who nearly killed his mother on three different occasions. Linda can't stay
alone with Eric and she won't let Sara bring her new baby home because it
is not safe. I understand what you are going through and am sending you
love and hugs.
comment by elderjane on Sept 13, 2011 4:39 PM ()
I read a good book called, "Gravity Pulls You In" over the summer. It was a collection of essays from parents of children on the autism spectrum. Everything from very high functioning (the gentleman who wrote the foreword was diagnosed with Asperger's Syndrome in his forties) to very low functioning with everything in between. Maybe it would be of interest to you or your daughter?

I pray for your daughter and hope that she somewhere finds the strength and that she has at least some supports to help her care for her son.
reply by juliansmom on Sept 14, 2011 6:20 AM ()
Holy crow!
comment by crazylife on Sept 12, 2011 8:51 PM ()
Yeah, not the best summer I've ever had...
reply by juliansmom on Sept 13, 2011 9:52 AM ()
and you leave us hanging there! i was on the edge of my seat! poor julian, cannot imagine the chaos created by the move for the little guy. but it seems the story must have a happier ending as it implies you have already moved. whew! I wish I could just pop over and enjoy a cup of coffee with you.
comment by elkhound on Sept 12, 2011 12:34 PM ()
I didn't mean to leave you hanging. The television line up started to upset the man of house and I had to log off.

I would *love* if you could pop over for coffee! Of course, I probably wouldn't get any housecleaning or laundry done...Not sure that's a bad thing....
reply by juliansmom on Sept 12, 2011 6:25 PM ()
Oh man! >3
comment by jondude on Sept 12, 2011 11:02 AM ()
Indeed!
reply by juliansmom on Sept 12, 2011 6:24 PM ()
You poor girl. You are definitely a great mom. You do so much for your kids. I wish there were some things that I could do to help.
It sounds like the move was super-challenging, but that can happen with change. It really throws all of us, but but autistics definitely struggle more with it.
comment by lunarhunk on Sept 12, 2011 9:56 AM ()
Temple Grandin wrote in one of her books that when she learned her aunt had passed away, she felt mildly sad. But when she found out that her aunt's ranch had been sold, she was hysterical. Generally speaking, people with Autism get more attached to places and things than people (the way that we do). Reading that validated what was happening and that really helped.

It's funny you say that you wish you could help. I thought of you numerous times over the summer because you're a librarian and much of the reading I did came from books my mother checked out of the library for me (it was almost impossible for me to go to the library and she goes once a week, at least). Three cheers for helpful librarians everywhere!
reply by juliansmom on Sept 12, 2011 10:25 AM ()
Your writing is so lyrical, and does so much to enlighten me with regard what it's really like to live with an autistic child. Thank you for trusting us enough to share. Big hugs.
comment by troutbend on Sept 12, 2011 9:49 AM ()
You're making me blush.I read over what I write and cringe.
reply by juliansmom on Sept 12, 2011 10:26 AM ()
Oh my goodness girl. Your plate is so full it's over flowing... I do not know how you do it, I really don't. Overwhelming to say the least... Have you been in contact with Temple Grandin? I mean Julian seems severe - or is this what most autistic parents are dealing with on a daily basis? You are seriously a saint in my eyes.
comment by kristilyn3 on Sept 12, 2011 8:25 AM ()
Julian is actually considered to be high functioning. Not severe at all. The transition of moving brought out the worst in him. I don't like to speak for other people or other parents, but yes. This is what we all deal with on a regular basis, more or less.

And I'm not a saint.
reply by juliansmom on Sept 12, 2011 10:31 AM ()
I really do admire your love, courage and fight for your child. I don't know how you stand up under it but, obviously, you do.
comment by greatmartin on Sept 12, 2011 8:05 AM ()
Thanks, Martin.I think we all do what we have to.
reply by juliansmom on Sept 12, 2011 10:32 AM ()

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