the reality is.

by debi9kids on May 2, 2012

Life with autism isn’t always pretty and some days all of the alcohol humor in the world just doesn’t help.
I usually try to just look for the positive moments each day with Will and I definitely try to focus on those moments when I write about him, but the truth is… some days I just want to cry.

Today, Will woke up in a mood.
Wait. Let me re-phrase that.
He woke up happy; it was when I tried to get him out of his crib this morning that the crappy mood emerged.
He didn’t want to get dressed so he fought me and as I got one leg into his pants, he removed the other; as I pulled his shirt over his head, he pulled off his socks.
(you get the picture)
And as I struggled to get him dressed, I felt my pulse quickening as I realized the time was ticking away on the clock and we were now going to be rushed for breakfast.

And, breakfast has been a chore.
Will refuses to eat.
I’ve tried everything and all he seems to want to do is rip apart whatever I put in front of him and throw it to the floor.
Ugh.
We’ve resorted to just giving him Pediasure just to make sure he doesn’t starve and I be charged with neglect.

After breakfast, Will ran to the door and started to pound on the glass saying “bye bye”.
Now, not that I’m not happy that he finally wants to go to school happily BUT it sure would be nice if he could be patient and not break the glass while he is forced to wait (and I am thus forced to sing 800 verses of row, row, row your boat and play patt-i-cake over and over)

The bus finally arrived {ok. it really wasn’t a long wait. It just felt long.}
I took Will down the stairs and as I strapped him into his seat, he said (clear as a bell), ” It’s going to be a great day today.”
And, suddenly I felt a twinge of hope again….

It was short-lived.

I picked Will up from school at noon and he.was.miserable,
literally howling in his seat the entire ride home and that is when the full-on panic hit me.
I knew I had to be at the high school today for senior recognition for track and as I looked in the review mirror…
This is what I saw:My son, unbuckled.
Literally and figuratively.
And I realized that taking him with me was going to be hell and sadly, my only option because Russ was in NJ.

And, it was hell.
The entire time I stood in the bleachers waiting for the ceremony to start, he cried and yelled and tried to flip himself out of his stroller.
And during the ceremony, more of the same.
And, the car ride home… it doubled.
He took off his seatbelt, he threw off his shoes and socks, he bit his own hands, and banged on the windows.

This is all new.

Up until about 2 weeks ago, Will had never thrown a tantrum.
Not a real one.
He’d never been hard to handle like this and I.am.overwhelmed.
And I am guessing he must be as well and unfortunately, I just don’t know what to do to help him and he can’t tell me.
And, frankly, I could use a break.
Or some medication (for him or me).
And definitely a support group.
And friends I can actually get together with.

And suggestions.
Please. Some suggestions.

But please know, before you suggest , please keep in mind that Will is developmentally 18 months old.
I can only speak to him and expect him to understand what I would expect a child under 2 years to understand.
And that is the dilemma.

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{ 22 comments… read them below or add one }

Tracey May 2, 2012 at 3:54 pm

Debi, I am so sorry you are going through this. I pray you find some answers for you and for Will. I don't know if this would be of any help, but here where I am in NJ, there is a place called the Eden Institute. I realize it is way too far for you to be able to send Will, but I am wondering if they could be of any help to you in pointing you in the right direction for a support group or other resources that you could access remotely? They are located in Princeton and the phone number is 609-987-0099.

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debi9kids May 2, 2012 at 3:55 pm

Thanks Tracey.
I honestly am not even sure if we have a support group in my county and as much as I'd love to say that I'll start one, Lord, I don't know if I have the time/

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Sharalyn May 2, 2012 at 4:01 pm

Oh, sweetie! BTDT…it's not pretty. Hard to explain why your 5 (or 10) year old is having a fit about who knows what to those judging you around them.

Only things I found that helped:

1) Working out a plan with OT for what best to calm him — in our case it was a weighted lap blanket or a weighted blanket for those extreme times (always tried hugs with deep pressure first)

2) Making sure that basic needs were fully taken care of: food, sleep, comfy clothes, etc.

3) Finding sensory things that helped drown out the over-stimulation–in our case it was often swinging (yes, my arms became very huge from swinging him back and forth) or a CD of music that he loved (my hubby compiled one).

4) Watching for things that will set him off and attempting to avoid them. If unavoidable, provide the above to help lesson the impact (throw snacks at him in the car while under a weighted blanket).

5) Knowing that sometimes, there just ain't nuthin' we can do to "fix" it. Sometimes, it really isn't up to us, let them have their space (I don't know how many tantrums I sat quietly through in the car until he was done). Knowing that sometimes the quiet and space to do their thing actually calms them better and faster than anything you can try (which sometimes makes it worse).

Know that this too shall pass, but you will be stronger and he will feel more loved simply because you were there and walked through it with him. ((hugs))

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debi9kids May 2, 2012 at 4:14 pm

Thanks Sharalyn.
I am actually really hoping to get Will a weighted blanket. I KNOW it's something he needs. (he uses a vest at school and has been taking his crib mattress off and putting it on top of his body to soothe himself)

We also do the spinning. (he has his swing in out home) but sadly, I suffer from vertigo so I don't do too well when it comes to helping him out 🙁

I SO wish he would wear headphones because he loves music and I think it would help if he could drown everything else out…

Thanks for the feedback. Truly.

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Sharalyn May 3, 2012 at 7:53 pm

Ok–blanket-wise, do you have one? Have you seen the how to make one? I have a lap pad I'd be happy to send you as X has outgrown it (both physically and need-wise).

Yep–I hear you on the spinning–I too get bad vertigo (I couldn't watch him at the playground at all). Here's what we did: 1) Cradle him like a baby in your arms–brace your feet hip-width apart and just swing him back and forth (not really spinning, but the back & forth seemed to help). 2) a friend gave us her old Sit 'n Spin. I put that sucker in the car and we'd pull it out in *really* odd places and just let him have at it once we taught him how to spin himself. It's great for the spinning aspect *and* gives large deep pulling feelings to the arms.

In the car, we just played the music (while Mommy went slowly insane with the Wheels on the Bus for the umpteenth time) on the CD player. He wouldn't wear headphones until about 3 years ago when he was 7–things improved *so* much in the car after that.

((hugs)) Hope some of that helps!

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debi9kids May 3, 2012 at 8:05 pm

thanks for the tips! We had a sit and spin (before we moved) and he couldn't figure it out (yet). Sadly, it's one of the items we left behind because of lack of packing space.
I might take you up on the lap pad. (I'll email you privately tomorrow)
I don't sew. I SO wish I did. (I can hand sew but with a machine, forget it. ugh) I wish beecause I would blanket my home in sensory items 🙂

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Sharalyn May 4, 2012 at 5:40 am

Ok–we need to talk. Email me!!!

Kim jacoby May 2, 2012 at 4:04 pm

Oh debi! Im sooooo sorry! I wish i was there for you. You can send him to me for a break. But id say you have to set as many rules as he can handle. No more pediasure. I know you dont want him to starve and social services is always an issue but giving hom that fills his tummy so he will never be hungry and shiws him you will give in if pushed to your limit. Make sure your pediatrician lnows that youre having feeding issues so its documented.Then only offer him fruits and veggies. Even spectrum kids get hungry eventually. I have more advice but ill let you digest that first. I love and admire you. You are the best mommy for will. God gave him to yoy and He has faith in you. So do i.

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debi9kids May 2, 2012 at 4:17 pm

I don't know if I can do that Kim. He would become "more tantrum"y", I think, because he'd be hungry and pissed off.
I don't know.
I definitely plan on calling his doctor tomorrow because I do think we need to see a nutritionist, among other things.

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Sharalyn May 3, 2012 at 7:54 pm

Is he getting oral therapy? If not, he should be! Made a *huge* difference for X.

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debi9kids May 3, 2012 at 8:06 pm

He gets speech 20 minutes 4x a week at school along with having the speech teacher in class the entire time he's there.

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Holly May 2, 2012 at 4:17 pm

Please, please, please feel free to contact me any time you need help, a shoulder to cry on etc. Unfortunately Brian has tantrums, lots of them, and he is 14 years old and 185 pounds of tantrum. There have been moments when it has taken three of us (Bill, myself and Chad) just to get Brian into bed. It is not easy. I too, look for the times when Brian is happy and helpful and cheery. I sometimes feel so guilty when, after a tantrum, when I am still mad as hell (Sorry for the bad word) and Brian looks at me, and is happy to see me, and has no idea why I am upset with him.

I would be happy to lend a hand any time, even if it is just to be there with you as a support.

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debi9kids May 2, 2012 at 4:19 pm

thanks Holly.
I think we really should actually meet up for coffee one of these days instead of just saying we will 😉

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Holly May 2, 2012 at 4:39 pm

Sounds good to me 🙂

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Life with Kaishon May 2, 2012 at 4:40 pm

Oh Deb. I am so sorry for your stress. I will pray that things get better soon. : ( Sending lots and lots of love!

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Mama D.s Dozen May 2, 2012 at 4:50 pm

My only advice … meet up with Holly. 🙂 It sounds like she understands … could give you some support … and might even be able to give you a bit of respite on those days you just don't know if you can survive.

Even though I have no other advice, I DO know how to pray … and pray I will.

While I do not have an autistic child, I do have a child with RAD … who knows how to RAGE for hours on end … who does not behave at her age-level … who actually seeks to embarrass me by her behavior sometimes.

Hugs & Prayers to you, my friend.

Laurel

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Holly May 2, 2012 at 5:01 pm

Ah, Laurel, RAD children are soo frustrating, I have one of those too 🙁

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Barbara Manatee May 2, 2012 at 5:22 pm

So sorry to hear this Debi. Have you talked to his teacher? Are they seeing the same change in behavior at school that you are seeing at home? Have there been any changes in his diet, routine, or home? Something that might have triggered the change in behavior? I always try to remember that behavior is communication. That it means something -we just have to figure WHAT that is. (which I know is not always easy!)

I know its tough to find the time for a support group, but what about trying to befriend some other parents of kids in Will's class? They'd be local and can relate. they may also know of some other local resources that you could access…

Hang in there and I hope his change in behavior is a short, temporary thing.

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Mimi May 2, 2012 at 7:07 pm

Deb, I have no words of wisdom, because I've never dealt with this before. I can't even imagine what it must be like. I would be so overwhelmed. I pray that this is just a stage. I know he's not like every kid, but they do go through phases and maybe this is one of his? I don't know. If I could give you a big squeeze right now I would. {{HUGS}}

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cat@jugglingact May 3, 2012 at 1:40 am

Oh Debi, you know that as always my heart aches for you. And you know I do understand just a teensy bit of this. Certainly not all, but a teensy bit.

AS you may remember L had the worst tantrums that he totally could not get out of. Totally. We are much much better these days bit we had one two afternoons ago when I parked the car in the "wrong" (not usual) spot. That small a change just got to him.

We used deep pressure a lot – we still find it most effective. I hold him very tight but also apply pressure on his main joints like wrists, elbows etc. His little tent was also a winner (remember that?) – and the brushing floowed by pressure point works wonders.

But I am sure you know all this?

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debi9kids May 3, 2012 at 3:10 am

Thanks and yes, I do remember.
Deep pressure does work for Will as well. (He.loves his massages).
It's those times like yesterday though, where I'm trying to take pictures of my older.kids that I just have no clue what to do… Stop functioning? Ugh. Just makes me want to cry sometimes because I guess that's what I need to do. Stop.
Like driving the van. Do I stop? Do I let him get out? I know safetywise what I need to do (& did) but its hard when I'm on a schedule too. Ya know?
(I know you know. )

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16blessingsmom May 4, 2012 at 5:19 am

Oh Debi, sounds so challenging! I wonder if something at school is the trigger for the tantrum. I read recently that a dad sent his non-verbal child to school with a recording device hidden in his pocket which picked up the teacher calling him rude names. The boy's parents were wondering why he started throwing chairs, ect., and discovered he was just plain frustrated at how he was being treated at school.

I wish I lived closer so I could just give you a hug.

Della

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