Losing it

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM.

(you can read the first 3 chapters HERE.)

I sat on the sofa that looks out our living room window, my attention torn between the People magazine in my lap, and Matthew, who was sitting cross legged on the front lawn, inspecting — or was he dismembering? — a dead butterfly. A heap of laundry on and around the coffee table nagged at me – I was just too tired, too scattered. Peter wandered in from the kitchen, beer in hand.

“Where’s Matthew?”

“Right there,” I said frostily, motioning to Matthew.

Saturdays were hard, and seemed to go on forever. Someone always had to keep track of Matthew – and one of us always thought he or she was doing more than the other.

In truth, keeping track of Matthew was an impossible task, and we were both doing our best. In earlier days, we had alternated taking Matthew for hikes or to the movies.  We took him to Tilden Park for train and merry-go-round rides over and over again. We went through a stage when Peter took him to a small local airport to watch the planes take off for hours. But at age fourteen, he preferred the company of kids his age, and was good at finding the ones who liked to challenge him to spitting contests and walks to pot smoking hideouts in the local cemetery. We were constantly searching for him, trying to redirect him”¦ and running out of steam.

Suddenly, the view out of our living room window changed, and I felt my feet planting firmly into the red oriental carpet, ready to act. An elderly Asian woman and her husband walked by our house slowly, and said something to Matthew. The woman was shaking her head and pointing at the butterfly that Matthew was”¦ playing with.

“Uh oh”¦” Peter and I mumbled in unison. Before we could move, Matthew picked up a rock and hurled it at the woman, hitting her in her shoulder.

Peter flew out the front door, grabbed Matthew and dragged him inside while I apologized profusely to the couple. It was clear they didn’t speak English, so I clarified Matthew’s situation by pointing at him, then pointing my index finger at my temple, twirling it around and saying “Crazy”. They nodded sympathetically and went on their way.

By the time I got into the house, things were heating up.

“She didn’t look nice!”Â  Matthew yelled at Peter, who gripped Matthew’s upper arm firmly.

Uh, oh. Peter’s going to lose it.

“You don’t throw rocks at people who look at you funny when you are doing something FREAKY!” Peter roared.

Matthew went nuts, and started punching and scratching him. It seemed that Matthew became stronger with every meltdown.

“Don’t hit back!” I yelled at Peter, who succeeded in pinning Matthew to the hardwood floor.

I could tell Peter was tempted, and I didn’t blame him. This wasn’t the first time Matthew had attacked”¦Peter and I have jagged scars on our hands and arms from similar incidents.

Matthew got loose and kicked a hole in the wall before I could pick up the phone and call 911.

Within a minute, the doorbell rang. I opened the door, and there stood Officer Jones in his navy blue uniform, complete with badge, gun in holster, and club.

I had never seen a situation diffuse so magically.

The first person to speak was Matthew.

“Oops,” he said, as if all that had taken place had been accidental. A piece of sheetrock lay at his feet, its powder covering his right calf.

Officer Jones was medium height and build, with a black crew cut and a passive expression on his face, like a young Joe Friday.  He spoke calmly and quietly.

“Please tell me what happened,” he said. There wasn’t a hint of anger or threat in his voice.

“The lady didn’t look nice” Matthew explained, “and I sort of threw a rock at her.”

“And I told him you don’t attack people who look at you funny!” Peter injected, heating up once again.

Officer Jones’s expression remained spookily unchanged.

“Mrs. Shumaker called 911 because of a domestic altercation. Who started it?” he asked smoothly.

Autistic“ I whispered to the officer from over his right shoulder-he looked at me as if I were a nut, but paused and processed my clue while Matthew proceeded.

“I sort of hit my dad first, but then he hit me next.”

God help us.

“Matthew, I didn’t hit you” Peter said, glancing sideways at the policeman. “I held you down so you would stop hitting me and kicking holes in the wall!” I looked at Peter and cringed. Normally a buttoned up kind of guy, today he happened to be wearing a white threadbare undershirt with two small holes an inch above his left nipple. I scanned the room for his beer bottle and casually kicked some unfolded laundry behind the couch. A bra got tangled around my ankle, and I stumbled to regain my balance.

The officer seemed unmoved, and his ponderous silence made us nervous. After a moment, he spoke.

“Matthew, your father is right. You must never throw rocks at people. If someone upsets you, find a parent and let one of them handle things. You must never hit your parents. Do you understand?”

“Am I going to jail?” Matthew whimpered, obviously humiliated to have disappointed this powerful figure.

“No.”

“Can I talk to you for a minute?” Matthew asked the officer, his voice quavering, his expression pained. I could tell he was hurt by the gulf that had formed between us.  ” I don’t want my parents to hear.”

Peter and I listened from the next room while Matthew and the officer chatted on the couch. I could see only the upper right quadrant of the officer’s face. Matthew told him how hard it was when people made fun of him. He told him how lonely he feels when his brothers go out with friends, and he has no one to hang out with.

“I have friends,” he said, “but they’re really busy.”

Matthew told Officer Jones that girls look nice, and that he would like to be able to touch their hair, even though it’s against the rules, and that his Grandma was really sick and might die. The officer listened, the expression on his face softening ever so slightly. Just as Matthew was about to show him his room and his middle school yearbook, the officer’s radio crackled–something about a shoplifting incident at the convenience store on the main drag.

“It was nice talking to you, Matthew. Will you remember what we talked about?”

“I surely will,” Matthew said resolutely. “Do you think you can come over again if I need to talk?”

My poor, lonely boy”¦he had made a connection, a friend. I never thought there would be a day when I would want a police call to last a little longer.

“Matthew, I am happy to talk with you, but I never want to come to this house again if you have thrown a rock, or hit your parents, or put a hole in the wall. Do you understand?”

“Do you ever shoot bad guys?” Matthew asked, trying to keep things going a little longer.

“Only if I have to. I really have to take this “¦” as his radio barked with urgency.

“But you’ll remember what we talked about?” he asked, placing his hand gently on Matthew’s shoulder. Matthew nodded his assent, tears welling up in his eyes. Officer Jones could have turned to me and asked me for a new police dog. I surely would have given it to him.

Matthew walked his new friend to his car”¦I thought I heard him ask the officer if he’d ever had a seizure – and off he went. I stood with Matthew, patting his back lightly as he watched the police cruiser drive away.

“Does Officer Jones think I’m a good guy or a bad guy?” Matthew sputtered.

“He thinks you are a wonderful guy.” I said.

“I’m not going to jail?” Matthew heaved.

“No, honey. You’re not.” And Matthew fell against me and cried, tears of relief, regret, and confusion.

Matthew didn’t notice the curious neighbors peering out their windows.

I’ll give them a call later

But what could I tell them to preserve Matthew’s dignity?

“I hope he gets those bad guys.” Matthew said, trying to pull himself together.

“I’m sure he will. Let’s get you a cold washcloth and a drink of water.”

“I’m a good guy”¦” Matthew muttered, as we walked back into the house. I drenched a washcloth in ice-cold water and held it to his face as long as he would let me, and he went in his room and shut the door.

Peter and I sat at the dining room table, wiped out. We felt exposed, sad for Matthew, guilty for letting things get out of control. We marveled at how quickly Matthew responded to the police officer, and resolved to use his approach the next time.

But could we do it? Could we be firm and remain calm when Matthew throws a rock at someone, or kicked a hole in the wall, or reappeared after we had been searching for him for two hours?  I could be a good actress, I thought. There was no way I could do it otherwise.

“What time is it?” I asked.

“4:59″ said Peter, and got up to pour me a glass of wine–it would be 5:00 by the time it reached my lips. Then he went in to see Matthew. I heard them talking quietly, then laughing–and off they went to get an ice cream cone.

I tried to remember the last time my parents had “lost it” with me. It had been a long, long time ago, and I didn’t remember the details. But I did remember feeling alone and scared. I craved for swift resolution to the bad feelings. I longed for the hug, for the tears of joy and relief, and for the laughter that followed.  I remember going to bed feeling safe. Everything was going to be all right, and I was the luckiest girl in the world. And when Matthew bounded through the door, peppermint ice cream all over his face, I went to hug him, but he had moved on.

“Mom, I’m too busy for this!” and he ran to the back yard, and out the back gate, searching for the source of a sound that only he could hear. Peter gave me a quick kiss, and ran after Matthew, threadbare t-shirt and all.

Suddenly alone, I felt gripped with anxiety. I was haunted by the events of the afternoon- the look of disgust on the Asian woman’s face,  the police car in the driveway, the curious neighbors. I saw Matthew’s tormented face, red from crying, and slick with a mixture of tears and slobber. I worried about Andy and John and knew they would hear from the kids at school”¦There was a police car at your house –again?

I knew that everything would not be all right.

nd then the doorbell rang. It was my neighbor, Dori. She held a loaf of banana bread and before I could thank her, she gave me a hug.

Then I lost it.

Comments

  1. This story really hit home for me, I am typing this as tears roll down my cheeks. I too have a son now 7 with autism. I have had many battles with him over his aggression toward me and others. I have always had this awful fear that the older he would get and the less he understood about people and they’re comments or reactions he would lash out at them the way he has with his brother and I. I know it is would only be because of confusion and pain, but of course it’s not tolerable behavior. My son has expressed his deep feelings of loneliness, and the desperate desire to connect with someone. I truly feel for your son and your family and it takes such strength from everyone to just keep going. Thank you for sharing your story as it reminds me, this fight against autism, we are not alone.

  2. I found this moving. I have somewhat of a tendency to put holes in doors and walls – much of my life is an “oops”. Thanks for this.

  3. I know so many families out there are going through pain related to their children,or in my case grandchildren. This was nicely written of what it is like for all involved. I so worry about the future and what it holds for my two grandsons and how they will cope and handle it. This gave a glimpse of what it will be like as they get older. I’m glad I read this, we aren’t alone.

  4. I loved reading this…I too, have tears rolling down my face because I have lived these types of moments with my own autistic daughter with all the fear, anger, and relief until the next time. How old is your son now? I have had to take classes on how to protect myself without hurting her. It’s a horrible thing to endure. It rips your heart appart each time it happens. You love your child so much, and you do so much for them, and yet they can attack and hurt you at a moments notice. I have scars up and down my arms from the attacks and bites. It helps to know that I am not alone. I have never called the police but there may come a time when I will need to. I am thinking about going to the police station and talking with them about her before they would ever have to respond to our house so they know the situation before walking in. Thank you for sharing your very moving story.

  5. Gretchen says:

    Thank you for posting your heart moving, tear making story. We have a 13 year old child with autism who’s come a long, long way once we decided to remove all chemicals from our home and starting a special diet without artificial colors or preservatives as well as starting Houston’s Enzymes, “Zyme Prime, AFP Peptizyde, and No-Fenol.” We started giving her these wonderful enzymes when she was about 5 1/2 years old and saw tremendous positive changes. We no longer have what I call the “wild cat” child (kicking, screaming, biting)…After seeing the changes in her behavior, I now believe her body was responding negatively to chemicals (that we smell, touch, ingest) and by avoiding them can help tremendously with behavior. Chemicals are unhealthy for all people, but it’s even more detrimental to the sensitive ones. Thank you for getting your story out. Many of us can relate. Hugs to all and wishing you all strength…

  6. I too, think this is an amazing story. It ‘hits’ home for me. My son is 4.5 years old with Autism. We were leaving my parent’s house and my son had a meltdown. I picked him up and he punched me in the face. The day prior, he pulled my hair with both hands, hit, kicked, scratched and bit me, during in home therapy. This happens on a regular basis.

    It is heart breaking. All I can think of is – What am I going to do when he hits me harder at age 15?

    You are not alone!

  7. Sandra Kaye says:

    simply moving. and so glad you would share your story! i really would like to read your book TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW. I would love to be able to understand my son more. All of his frustration and anger becomes my pain on a daily basis. I fear mostly for what school will bring as far as being bullied and/or picked on. That is something I won’t tolerate, but am ready to fight for him at any given moment. I know one day he will find his voice and tell me what he wants me to know. He speaks random verbal words. but that, to me, is great, because I know he has potential. He is smart, he just doesn’t know how to get it out. I got him his own home just so he can be himself and no one can tell him to be quiet or any thing like that. He needs the freedom to be himself and he is getting more aggressive about hitting himself. I really do want to thank you for making the facebook profile, or else I would have never gotten to read this. Look forward to reading your book also!! THANK YOU! :-]

  8. I would also really love 2 read TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW also!! I also have a 4 yr old son w/ autism. He isn’t very violent but every once in awhile when he gets mad enough when your in his eyes messing with his stuff he definatly hits, kicks, & scratches, & most scary 2 me lately only twice he put someone else arm in his mouth when he was mad,& acted like he was gonna bite but only did lightly as if it was a warning 2 the person who was in his space. I really hope 2 keep control of this as he gets older also!!! & fear for what could happen if i can’t!!!!

  9. This story mad me cry too. I have been through many days like this with my 4.5 yr old son. Just last week he started hitting and kicking strangers on the subway and when he was three, he went through a phase where he would try to hit every single little girl he saw (it became an obsession–the more we restrained, the more he felt compelled to do it). We couldn’t, and still can’t, take him anywhere, because his mood changes on a dime and he can start getting aggressive at any time. I’m exhausted from always being on guard.

    Other families don’t understand the luxury they have that they can go virtually anywhere with their child, without fear. I have a “typical” younger son now and it’s like night and day. I never knew until this year how easy motherhood was for other women.

    I pray the symptoms my older son faces will ease up with time and therapy. It breaks my heart how hard it is for him to make/keep friends and I have a horrible sinking fear that he will end up like Matthew, lonely and better able to relate to adults than other kids. I would go to the ends of the Earth to make a normal childhood happen for my son.

    I just want to give poor Matthew a hug!

  10. Sheri Mcmahon says:

    I came to the motherlode blog via someone I know who is involved, as I am, in child welfare activism, and then came here. I can’t help but this of the “Parenting under Scrutiny” blog entry from the other day. Your family was very lucky. Very few officers I have seen would have responded as this one did. My son has Tourette’s (and several other diagnoses that often accompany TS) and was cussing up a storm one July 4 while, unbeknownst, two officers were outside the door to investigate a report of firecrackers going off (yes, my son had done some. . . but the household across the street, which blew off several hundred dollars’ worth of fireworks and left the litter in the street, was not visited by boys in black) They apparently heard the commotion and decided to listen for awhile before knocking, so the first thing we had to deal with was interrogation about my son’s outbursts. It was a close call. One officer was very hostile, I tried telling him about the Tourette’s, he didn’t like being interrupted and was about to handcuff me. They backed off, but not in a compassionate fashion, when I ended up lecturing them.

    A single, poor (on disability herself) parent with a son with Asperger’s I know was on waiting lists for services (such as respite care) for months. She went to the county to press the issue and was told they could help if she agreed to admit deprivation. No thanks, she said–she knew better. Still waiting for services, she started calling the cops when Richard had a meltdown and started hitting. They started getting annoyed and one day told her if she let him stay in attendant care for 3 days without picking him up, he would get the help he needed. Ok, she decided. From there it turned out to be a quick trip to what turned out to be an abusive foster home before he was placed in another foster home 90 miles away. No psychiatrist, just drugs prescribed long-distance by a doctor he had seen once a year before he was taken into custody. No therapy. They toughed it out for a year before he turned 18 on a visit home, and stayed. He has two years of h.s. left. He will be testifying before a legis committee in September (he’s very articulate on paper and will read his testimony).

    If you had lived in public housing or most rental property, the broken sheetrock could get you evicted. And that afternoon your son would have quickly gone into “protective custody” followed by a CPS investigation concluding you and your husband were unable to “meet the child’s special needs.” The “crazy” gesture would have been marked as inappropriate, possibly psychological maltreatment, although the judge would likely have just scolded you and brushed it off.

    This is not to minimize the exhaustion, the pain, the worry, the stress–or the joys. But it is interesting that you felt reasonably secure in calling 911 and the outcome justified your willingness to do so.

  11. maureen mccarry says:

    Very realistic and down to earth story that I can relate to. Thank you for writing this I don’t feel so alone with our son after reading your storey becaue it is so much like what has happened in our home. I really appreciate your
    writing. Very moving to read and I wish you and your family the best. I also sent this to extended family members because It may help for them to understand why we have the same issues in our family.

  12. Dianna says:

    When my son was 3 years old, he was still not diagnosed with autism. He was always verbal but back then, he could not answer any questions. He would just go on and on about whatever was on his mind and half of what he said was just gibberish. He had a bad habit of wandering off at the time. I came to pick him up one day from my mom’s house from work and made the mistake of letting my guard down for a minute and having a conversation with my mom and out the he went without even so much as a whisper.

    My whole family went out and looked for him and a few minutes later I got stopped by a very angry policeman in his cruiser asking me if I was looking for a little boy. I told him yes. He told me that a lady two blocks down and one block over had found him and called the police and venomously said that I’d better get over there and thank her. I went to the lady’s house and found her standing in her front yard and there was another police cruiser parked at the curb with my son in the front seat.

    I was humiliated, I was scared, I was afraid the police would take my son away from me and put him in a foster home. I started crying and the lady who found my son came over to comfort me and tell me that she did did not judge me and that she was not angry with me. She told me that things like this happen all the time and she was not upset at me at all, but she just didn’t know what to do with this little boy that she had found because he couldn’t tell her where his mommy was so she had no choice but to call the police.

    I thanked the kind woman profusely and the policeman got my son out of his car and said some very angry words about how this had better NEVER happen again, but if it did I was to call the police directly because they handle cased where kids wander off all the time and there would be 3 or 4 police cruisers out looking for him instead of just a few people on foot. He told me I was damn lucky my son didn’t get hit or kidnapped or somthing. He made me feel like an unfit mother.

    But my son wandered off 2 more times in the next 2 weeks and by the third time the police had had it and literally threatened to have my son taken away from me if it happened one more time. After that, I literally put my house on lockdown. A chain lock for the screen doors in both my house and my mom’s and they were ALWAYS locked. My son has mostly grown out of that phase now but those were terrifying times.

  13. Buffy tapp says:

    I have a 8 year old son with autism. He is up to one word request as far as language. I put this French locks at the top of every door thinking he was not big enough to open them. We ride him to a country gas station about a mile from our house for a treat for completely homework. He was 6 years old and one night decided to get up while the house was sleep. He took a kitchen chair placing it next to the front door and opened all locks exiting the house closing door behind himself. He walked straight down the road stopping at a neibors house to rub a cat..she heard something..got up and looked outside seeing a small child out at 1am. She came outside trying to communicate and he ignored her. She did not recognize him for he never runs and plays alone with other neiborhood kids. She followed behind with the car and it’s emergency flashers on. She called 911. He got 1 mile away almost to that gas station we ride him to for a treat. It took 3 sheriffs to catch him. They followed this neibors back to her house where she originally saw him and pointed them the direction he came from. They went door to door..knocking..my close by meow IRS came outside recognizing Justus in the back of the cruiser outside in their driveway. They came out in a frenzy..telling police he lives across the street. They followed police over..the wife soothing Justus..they knocked and no answer..my neibors said go in go in something is bad wrong..he would not be outside like this unless something is bad wrong. The police turnedthefront doorknob and opened the door went. The sofa cushions where on the floor because I let the children jump and play in them before we turned in for the night. The officers saw things dishoveled

  14. Buffy tapp says:

    I have a 8 year old son with autism. He is up to one word request as far as language. I put this French locks at the top of every door thinking he was not big enough to open them. We ride him to a country gas station about a mile our house for a treat for completely homework. He was 6 years old and one night decided to get up while the house was sleep. He took a kitchen chair placing it next to the front door and opened all locks exiting the house closing door himself. He walked straight down the road stopping at a neibors house to rub a cat..she heard something..got up and looked outside seeing a small child out at 1am. She came outside trying to communicate and he ignored her. She did not recognize him for he never runs and plays alone with other neiborhood kids. She followed behind with the car and it’s emergency flashers on. She called 911. He got 1 mile away almost to that gas station we ride him to for a treat. It took 3 sheriffs to catch him. They followed this neibors back to her house where she originally saw him and pointed them the direction he came from. They went door to door..knocking..my close by meow IRS came outside recognizing Justus in the back of the cruiser outside in their driveway. They came out in a frenzy..telling police he lives across the street. They followed police over..the wife soothing Justus..they knocked and no answer..my neibors said go in go in something is bad wrong..he would not be outside like this unless something is bad wrong. The police turnedthefront doorknob and opened the door went. The sofa cushions where on the floor because I let the children jump and play in them before we turned in for the night. The officers saw things dishoveled

  15. Buffy tapp says:

    They persued on inside speaking loudly police officers police officers….I hit the floor running,crying..blindly running for the door..in that few seconds of horror I thought what are they about to tell me..is Justus okay? I knew immediatley it had something to do with Justus my at the time 6 yr old autistic child. Soon as I got to the door I saw him sitting on th erring steps with my close neibors..I ran out and grabbed him sobbing thank you god thank you god..why are you out here? No response..he was kinda stemming..I said you do not ever go outside alone. The officers inside had skiable dad against the wall thinking he could be an intruder then after the all clear..Raymond took the officers through the house showing them our locks . They by law had to call Dss..I heard them o speaker phone. He asked me how many children do we have? I have a 2 yr old son too..I sobbed..are my children in danger of being taking from me ? Am I in trouble? It was a nightmare. The officers at first were very Angry..but after talking to us calmed down. Officers said they may or may not investigate.they told the social worker over the phone they had no other prior incidents with this family. I cried for a entire week. I would breakdown..while washing dishes..anything.we were never investigated. I tried to get a police report but could not because if a minors name is on it you cannot get one though it was my child ..I cannot get it without a court order. I heard through some neibors who the neibor was that followed him that night. I went down with a pamphlet on autism and thanked for for saving my child’s life.
    My son had made it all the way to that gas station we ride him on the golf cart too and it is beside a busy freeway..it
    was so dangerous for him to be out o the middle of the night ..I changed all our deadbolts to keyed deadbolts,screwed all the windows shut,wired the house with act security,put up a wooden privacy fence and padlocked all gates with the locks on the outside of fence. I have been to a funeral to a child who got out. I think of that sometimes and wonder about that night..I am so thankful I got a second chance. I luv you Justus.

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