My first time on this section of SKMB

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Mar 12, 2010
6,538
29,004
Texas
(((80sFan))) Your motherly love is strong. I don't think I have the temperament to deal with what you're dealing with. I'd get frustrated and yell and then feel guilty for yelling and then probably have a mental breakdown. I wish I could loan you more strength.

Is there a children's video with lots of repetition that might keep your son's attention? Something that uses the same phrase often that your son can repeat? My niece's daughter has problems similar to your son's and she watches that purple dinosaur (Barney?).
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
80’s fan, this story brought a tear to my eye. It’s almost as if you were describing my nephew. I really don’t know how you parents of children with that level of autism manage to keep your sanity. My nephew is a big child and now outweighs his father by about 30 pounds, and it is getting increasingly difficult to physically control his outbursts. It’s become difficult to bring him to our house anymore, as it’s too much stimulation for him and he commences on destroying things if anyone takes their eyes off him for a second. To keep some level of sanity, my B-I-L comes up for a short visit one day of the weekend to do their wash, and the other day is his day away, that each parent desperately needs. He says that day away (at our place) sometimes is the only thing that gets him through the week. I recently gave him some wall patch repair items so he can fix the holes his son made. I’m going to talk to my wife this weekend about buying them new furniture because his son has destroyed everything in their living room, and they don’t have the means to replace it. Do they make indestructible furniture?

Your BIL is very lucky to have you guys. I can totally understand the need for time away. The upside of being unemployed right now is that while our son is at school, my husband and I have a lot of time to ourselves (yay for breakfast dates!). Unfortunately, we are going into the last week of school...fingers crossed.

You are wonderful for wanting to help the family out with furniture. If you find indestructible furniture, please let me know...in my opinion nothing is autism-proof. My son has torn apart heavy duty Rubbermaid bins, ripped them apart like they're cardboard.

As sorry as I am about what is happening with your nephew (and his parents), I appreciate you sharing. It makes me feel less alone. And I am including them in my prayers.
 

80sFan

Just one more chapter...
Jul 14, 2015
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Pennsylvania
First, I want to say that this was powerfully written. You should try to get this published.
Second, my prayers and thoughts are with you and your family 80sFan. I remember when you first came to this board and you've been a part of it ever since. You are truly one of the "good ones." I know I could never deal with this if God had put such a situation in my path. The fact that you go through this day after day, week after week, etc. is heartbreaking in one way and awe inspiring in another. Again, my thoughts and prayers are with you. I'm not sure what religion you practice (if any) but I will light a candle for you at church this weekend. Even if you don't believe, don't worry I do. :)

Coming from you, this means a lot. I've always respected (and 99% of the time shared) your opinion on SKMB.
You are also one of the "good ones" so I can honestly say I believe if you had been given these circumstances, you would handle the challenges as best you could.
I'm a semi-lapsed Catholic (still pray every chance I get, but haven't been to mass in years) so I greatly appreciate any prayers and candle-lightings sent our way.
:encouragement:
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
80sfan I'm sending my Warmest wishes and Prayer for Blessings of peace and comfort upon you and your family, your beautiful son. Your writing brought me to tears. As the mother of 16 year old daughter with Autism, we have not experienced violence but have come close , I always know that its possible and fear it greatly, what would I do, I cant bear the thoughts of it. My heart is with you and your family and I Pray that everything gets better.

Thank you...and prayers to you.
I often wonder what it's like for parents of girls on the spectrum. I imagine that comes with its own extreme challenges, since typical teenage girls are no picnic, I give you much credit.
 

80sFan

Just one more chapter...
Jul 14, 2015
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Pennsylvania
80sFan , I hate to suggest it because I shouldn't have to, those folks at the hospital should know better, but if it's at all possible, in a moment where either you or your husband can, take an iPhone and video some of your son's most out-of-control and destructive behavior, so when they really give you a hard time you can show them that....

I do have some footage of the beginnings of different meltdowns, never the worst of it, because then I have to help hold him down. But I didn't even think to show it to the staff at the hospital.
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
(((80sFan))) Your motherly love is strong. I don't think I have the temperament to deal with what you're dealing with. I'd get frustrated and yell and then feel guilty for yelling and then probably have a mental breakdown. I wish I could loan you more strength.

Is there a children's video with lots of repetition that might keep your son's attention? Something that uses the same phrase often that your son can repeat? My niece's daughter has problems similar to your son's and she watches that purple dinosaur (Barney?).

You would deal with it if you had to...and yes, sometimes you would yell and feel horribly guilty after doing so...(trust me, if I had a dollar for every time I've done that exact thing, I could redo my son's room).

He goes through phases with movies.He'll watch the same movie every day for a month (or a week, or a season), then break the disc and go onto a different one. Or none at all. So random.
 

Doc Creed

Well-Known Member
Nov 18, 2015
17,221
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United States
I had the strangest dream last night. I was seated at a harpsichord, a teenage boy on my left, in an open room lighted by candles. The wet night pressed on the dimness and I kept telling the boy to focus, focus. To my amazement, it dawned on me the boy was Mozart: I kid you not. In the midst of this lucid dream I slowly realized I was, perhaps, envisioning a scene from another time... (not reincarnation, lol)
Anyway, my point is, I awoke with the strongest notion that Wolfgang Amadeus Mozart was autistic. I had no way of knowing this, and despite reading a hefty biography about him (in which it was not once suggested, or at least alleged, that he was autistic), I believe it may be true. This morning I Googled it, just out of curiosity. Sure enough, some people think he demonstrated many behaviors on the Autism Spectrum. I'd never heard this until now. So, despite the peculiar way in which I discovered this, I felt you may be interested in knowing it and knowing your son is in august company.
80sFan
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
That was just downright heartbreaking to read, 80sFan . I've actually been to autism support groups in the past with my parents, and have seen children with similar problems that your son is experiencing. I'm so sorry to hear that you're going through this. I think that it was great on your part to use writing as a means of catharsis; it doesn't help to bottle up all of this negative energy. It's toxic. I wish you the best.

((((80's Fan))))

You are amazing - healing vibes for you, your husband and your son - thanks for sharing your story with us
:apologetic::burn_joss_stick:

Love, well-wishes, and healing vibes sent your way, 80s fan. I can't imagine what you deal with on a day to day basis, but I want you to know that it doesn't matter one lick what those other people at the hospital or elsewhere think. You are an amazing parent and exemplary human being, and they have no idea how it feels to be in your shoes. I admire you and your husband so much for your courage, your strength, and your selflessness. :m_adore:

The struggle is real. I continue to hope for some wonderful breakthrough for autistic children.

CL_110811_Hope_Autism.png

Not Nadine already said what I thought, but I will add that I hope you get giggles more often. They must be a beautiful reward, and you and your husband deserve them.

Try (difficult, I know) not to let what others think bring you down. It is already bad that they will be less willing to help on the future and that they do not understand what really happens at home, and to bring down your morale in addition to all that is worse.

So please don't let it get to you. They would actually understand completely if they had to live through half your day, so you can know their lack of understanding is not your fault at all.

Hugs. And may the Lord sent strength to you and your husband, and less angry moments to your son.

Thank you so much for your kind words :love_heart:
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
I had the strangest dream last night. I was seated at a harpsichord, a teenage boy on my left, in an open room lighted by candles. The wet night pressed on the dimness and I kept telling the boy to focus, focus. To my amazement, it dawned on me the boy was Mozart: I kid you not. In the midst of this lucid dream I slowly realized I was, perhaps, envisioning a scene from another time... (not reincarnation, lol)
Anyway, my point is, I awoke with the strongest notion that Wolfgang Amadeus Mozart was autistic. I had no way of knowing this, and despite reading a hefty biography about him (in which it was not once suggested, or at least alleged, that he was autistic), I believe it may be true. This morning I Googled it, just out of curiosity. Sure enough, some people think he demonstrated many behaviors on the Autism Spectrum. I'd never heard this until now. So, despite the peculiar way in which I discovered this, I felt you may be interested in knowing it and knowing your son is in august company.
80sFan

Definitely interesting, thanks for sharing Doc!
 

danie

I am whatever you say I am.
Feb 26, 2008
9,760
60,662
60
Kentucky
Stacey,
After reading your post, I am amazed at your strength and tenacity. I have always admired you since you came to the board, simply because you're always kind, sweet, and I love your well-written posts. But reading about a day in the life of you has me searching for words to convey how my admiration has turned to awe. I think the title for your essay should be LOVE, because that was what I felt in every word. Like CYB, I think you should look into having it published. With your permission, I would like to share your post with my colleagues where I teach. Every parent and teacher would benefit from having read such a powerful example of love and devotion. You are in my thoughts daily. Much love to you and your family.
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
Stacey,
After reading your post, I am amazed at your strength and tenacity. I have always admired you since you came to the board, simply because you're always kind, sweet, and I love your well-written posts. But reading about a day in the life of you has me searching for words to convey how my admiration has turned to awe. I think the title for your essay should be LOVE, because that was what I felt in every word. Like CYB, I think you should look into having it published. With your permission, I would like to share your post with my colleagues where I teach. Every parent and teacher would benefit from having read such a powerful example of love and devotion. You are in my thoughts daily. Much love to you and your family.

Thank you so much, Danie :love_heart:...and please share with whoever you feel may benefit from reading it.
 

FlakeNoir

Original Kiwi© SKMB®
Moderator
Apr 11, 2006
44,082
175,641
New Zealand
I wrote this today based on my family's real-life experiences.

It's 5:30 a.m.
You are awakened by your child in the next room:


"Hey Mommy?" he calls.
"Yes buddy?" you answer.
"I got nothing to say to you!"
"Aaawww man", you say.


This repeats every 15 seconds for the next hour and a half.

If you give the "wrong" replies, if you doze off, if you take too long to answer or if he detects a hint of frustration in your voice, he will kick his walls or punch his windows.

Occasionally, he will deviate from the script and ask if he can get a bath yet. You have to time the bath precisely though because if he is ready for school too early, he will have to wait longer for his bus and waiting makes him so much worse.

This isn't a naughty toddler. This is a teenage boy with the strength of three men.


When you can finally run his bath water, he washes and dresses quickly then runs outside to wait.

You are thinking "that went well", when you hear him yelling and stomping on the deck.

You go outside and ask him how you can help, but he only says that he is "sad". When you ask him why, he threatens to "break the house".
He has the communication skills of a five year old.


When his bus arrives, he curses at the driver and aide and tries to hit them.
He bangs the window and kicks the seat in front of him. You don't know what to do. You can't drive him yourself or keep him home because you have someone coming in 10 minutes to reconstruct your kitchen (because in addition to all the "special" issues you face everyday, you have normal problems as well: currently, a dishwasher that you didn't know was leaking until your floor was half rotted away).

So you send him off and thank God for those understanding ladies who get him to school safely.


When he gets to his (special-needs only) school, his favorite aide will take him to the swing room in the hopes of calming him enough to get through his day.

You will stay home and have a panic attack every time the phone rings.


He will come home in the afternoon and stomp up to his room, where he will eat a snack while starting another round of "Hey Mommy".

If you are lucky, he will hold it together for a while. If you are lucky he will write little stories he calls "lists" and ask you to read them aloud. If you are lucky you will see smiles and hear giggles before bedtime.
But you are seldom lucky.


More likely, you will hear yelling and banging and stomping. You will go into his room and try to talk him down enough to prevent the situation from escalating.

When it does escalate and he becomes uncontrollable, your husband (who was trying to make dinner, because everyone still has to eat) will come attempt to restrain him before anyone gets hurt.
Sometimes this works, but most times it does not.


When you know your child is hell bent on hurting someone, you put on a thick heavy robe so when he bites and scratches you, it will hurt less.
You hope he won't break your glasses again or pull chunks of hair out of your head.

It takes you and your husband both to hold your child down, but every now and then a foot gets free and you get kicked it the face. Last time, you thought he broke your nose.


Since he likes to do things that get the biggest reaction, he will tear pictures off the wall to get to the holes he made before. He will rip insulation out and pull on electrical wiring.

When you are truly afraid he will hurt himself, you can call the county's mental health crisis line.

They will not send anyone. They will offer suggestions. They will tell you to call 911.


So you do it. You call 911.

Through your tears, you explain the situation and they send help.

They come quickly, but your child has already calmed down a bit when they arrive.

You child loves police, so he is excited to see officers and EMTs in his room.


(As upset as you are, you can't help but wonder what these people must think of this room...with cardboard patches and posters covering holes, misspelled words scribbled all over the walls. The only furniture is a mattress and a dresser. He has broken everything else. His bed, box spring, tables, chairs, toyboxes - all torn apart with his bare hands.
Most nights he still wets the bed. Even though there is a mattress protector that you disinfect daily, you're sure the room smells as bad as it looks.)


Your child is quiet as the EMTs lead him to the ambulance, because even though he appears sedate, that can change in the blink of an eye.

He permits an EMT to buckle him onto the stretcher and proceeds to enjoy the ride. He turns around and actually smiles at you while you sob.


When you get close to the hospital, the EMT radios ahead and asks them to prepare a safe room.

As you accompany him into the ER, you can read the faces of the staff. They expected an out-of-control crazy person and instead here is this cute little boy who wouldn't hurt a fly.
They are couteous but probably thinking you overreacted and are wasting everyone's time.


You both are taken into a room. A nurse gives your child a hospital gown and pants, which he happily changes into. He lies down on the bed. When the nurse asks him if he wants a blanket, he replies "Yes. Please."

When you are alone, he asks "Mommy, can we sleep here tonight?"
This is an adventure to him. A field trip.

You know with complete certainty that future meltdowns will involve him asking you to "call the ambulance".


After a couple hours without a single negative behavior, a doctor comes in. There isn't much he can do, since no one has witnessed anything except a calm, happy child and none of you have any injuries.

He offers a mild sedative to assure your child stays calm during the drive home.

It is long past his bedtime and you know meltdowns are more likely when he's tired, so you allow it.


You are discharged and it is a quiet ride home. He goes right upstairs and puts himself to bed. He sleeps until the next morning.


At 5:30 a.m. you hear "Hey Mommy?"

Oh (((girl,))) doing this for a job is nothing at all like living it. You have my total respect and if I could be there to help you in a practical way, I would. xox
 

80sFan

Just one more chapter...
Jul 14, 2015
2,997
16,167
Pennsylvania
So wrenching. So well written. I don't really have the words. I can only say, "Wow," and, "I'm sorry."

You're an incredible person, and your and DiO's BIL's and others' experiences remind me that I don't have problems. No, really, I don't.

All the best to you on this very difficult path in your life's journeys.

Thank you, Grandpa :)
 

Ebdim9th

Dressing the Gothic interval in tritones
Jul 1, 2009
6,137
22,104
I do have some footage of the beginnings of different meltdowns, never the worst of it, because then I have to help hold him down. But I didn't even think to show it to the staff at the hospital.

I hope my suggestion was helpful, although I can understand if you're uncomfortable with/uncertain about doing it ....