Special Moms-Saints Every One!

Years ago when my children were young, I was struggling through. I had 3 children, both of my boys had disabilities although my daughter had none.

Their dad worked all day so I was home alone the majority of the time with them. When he did come home they were usually in bed or he was kinda uninvolved. He didn’t really get it. He just knew he worked all day then when he had time off he needed chill time. Okay.

Anyhow, as I’m struggling through with all these diagnosis, one child with Organic brain disorder, Epilepsy, Intermittent Explosive Disorder, Traumatic Brain Injury the other with Bipolar disorder, Autism, Tourettes etc… I was finally really feeling low and struggling with everything, then a lady from DD services gave me a letter for Mothers day that contained something written by Erma Bombeck, this is what I would like to share for all you special Moms out there. It really made me feel better during the hardest part of bringing up my children and was given to me just at the right time, maybe just maybe it will be the right time for you too.

God Chooses A Mom for A Disabled Child
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth; son; patron saint, Matthew.

“Forrest, Marjorie; daughter; patron saint, Cecelia.

“Rudledge, Carrie; twins; patron saint…. give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independance. She’ll have to teach the child to live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t seperate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in midair.

God smiles. “A mirror will suffice.”

Happy Mothers Day to all you Saints out there! God Bless you!

Marie

Advertisement

What is PICA? Come on in to our world!

The easiest way to describe PICA is the mouthing or ingestion of non-edible objects past toddler stage of exploring textures.  There is a prevalence in institutions of up to 26% of the population from what I can gather. These are usually the DD (Developmentally Delayed) population, autistic or MR. I have also heard numbers of up to 30% of children have this, is that all children? or all DD children? what about adults? although I have read that there is no study conducted in homes to find out what the prevalence is so no data is available. Hmmm. Oh well I can tell you that in my home it’s a pretty high occurrence.

We have 7 autistic children in our home and 3 of them have diagnosed PICA. This is a rather high number of concern to me because that means that a lot of parents are probably dealing with it and it’s still not being talked about a lot. Even one of my higher functioning young boys is a PICA boy.  Some of his favorites are drywall, toilet paper, worms and animal hair. (No I don’t define my children by the issues they have it’s just easy to explain this way)

I heard of PICA years ago, and had seen a little over the years but my first real experience was about 6 years ago when a young man came in, pretty much feral if you will. He had torn apart the house, everything off every shelf, all dvd’s tapes and cd’s thrown on the floor and I was punched twice in the face in 5 minutes. This is not an exaggeration, this was actual timing.

He proceeded to put everything he could fit into his mouth into it. Imagine my dismay as he at the age of six reached into his diaper and pulled out a handful to eat (and I’m not talking the diaper)! Paper, tissue, candy wrappers, little plastic toys, hot wheel tires, feces you name it in his mouth it went. and down his throat. Took him outside and we had just mown the grass, there went freshly mown grass in handfuls grabbed up and chewed up and swallowed. Rocks that he could pick up he attempted, by now I knew what to expect, he would attack if you tried to stop him but he needed to know this was not safe. Dirt anything  that was different looking to him. He was a little different because he had never been taught not to eat the candy wrappers so we could change some of this. However the grass, dirt, and other stuff we still have to watch.

Our 12-year-old girl came to us at six, with severe PICA and still has it. we have to make sure her room is free of small objects, her toys are only to age 18 months and in the store, I actually tug on eyes and other parts to make sure they don’t come off to see if she can have them. If they come loose in the store, I know it’s a NO!  She cannot wear Barrett’s, she will take them out of her hair and swallow them. I have had to talk to the school a few times because there was a paper clip on the outside of her backpack and other things have happened like that.  This can be very dangerous as she is non-verbal.  There is now a PICA protocol in place at school and anyone who works with her has to be specially trained by the nurse. I have taken her in for ultra sounds and cat scans 3 times due to concerns of PICA and stomach pains. Not sure if she got hold of something when she was out of my home (major concerns were school). When we go to the beach we have to be careful of how much sand she eats. Make sure she does not get blocked up due to the sand then she has it coming out for a week.

Our other guy is only 7. He is picky about food, although he’s changing that but will pick up any little non edible item he can find. A blade of grass, a piece of rock, a piece of wire, you name it, if it’s not food, he likes it. If it is food, eh maybe not!

For these children I can’t set the table with a napkin or put a snack on a paper towel or any kind of paper, the will eat the napkin, paper towel, etc. Last night I was busy talking with the plumber, someone gave dessert to the 7-year-old with a paper towel underneath, so of course cookies were eaten and the paper towel was in the 7 year olds mouth before it got caught that a mistake was made. Oh dear, the life with PICA. Thank goodness only little mistakes get made. It won’t happen again though. It is easy to forget the new one has PICA since he is such a picky eater on his food and we are having to train him to eat all foods. But that is another subject or blog.

One of the favorites is feces, eewww!  although it was kind of funny that we have gotten so accustomed to this at this point in time that when we got the paperwork on the newest child reading through the stuff he eats, my daughter said eeww! I asked what part? the feces? she said NO! I get that, he eats LOTION! EEEWWW! I guess it gets into your brain that this is normal for children with PICA to do. We have had quite a few others come through in the intervening years having this issue that this is just NORMAL to us. The precautions you take with different children, as you adjust with any other portion of their disabilities or abilities you adjust to this also.

We buy them chewies to help with the need to chew but that does not take the place of or divert from the fact that we always have to be watchful and waiting for the next thing to pop in their mouth and swallow.

There is a theory that there is a deficiency of vitamins or minerals in their systems of that which they crave. We have had our children checked  for all vitamin and mineral deficiencies and no not applicable here so we need to come up with other reasoning. I mean really what on earth could drywall have in it anyway? Bottom line is the children are what they are, they try to eat things not safe and have to be watched vigilantly.

Here is a partial DSM IV explanation for those of you interested:

Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision

307.52 Pica

“The essential feature of Pica is the eating of one or more non-nutritive substances on a persistent basis for a period of at least 1 month (Criterion A). The typical substances ingested tend to vary with age. Infants and younger children typically eat paint, plaster, string, hair, or cloth. Older children may eat animal droppings, sand, insects, leaves, or pebbles. Adolescents and adults may consume clay or soil. There is no aversion to food. This behavior must be developmentally inappropriate (Criterion B) and not part of a culturally sanctioned practice (Criterion C). The eating of non-nutritive substances is an associated feature of other mental disorders (e.g., Pervasive Developmental Disorder, Mental Retardation). If the eating behavior occurs exclusively during the course of another mental disorder, a separate diagnosis of Pica should be made only if the eating behavior is sufficiently severe to warrant independent clinical attention (Criterion D). Pica is frequently associated with Mental Retardation and Pervasive Developmental Disorders. Although vitamin or mineral deficiencies (e.g., zinc) have been reported in some instances, usually no specific biological abnormalities are found. In some cases, Pica comes to clinical attention only following general medical complications (e.g., lead poisoning as a result of ingesting paint or paint-soaked plaster, mechanical bowel problems, intestinal obstruction as a result of hair ball tumors, intestinal perforation, or infections such as toxoplasmosis and toxocariasis as a result of ingesting feces or dirt). Poverty, neglect, lack of parental supervision, and developmental delay increase the risk for the condition….”

As always if you have any comments or questions, please feel free to leave them and I will respond as soon as possible.  Thank you!

Oh to get some sleep!! Autism & sleep don’t mix or do they?

When he came he had scabs and sores and bruises

In February I got a call asking to take in an 11-year-old child who needed to go to an institution, he was severely self abusive, had bruises all over his face, did not sleep, was swaddled in blankets during the day or when he wanted, was in a car seat strapped down, swaddled in blankets to stop the S.I.B. (Self Injurious Behaviour). At night he was placed in a car seat, he never slept in a bed, he had an issue with this, that is where he would fall asleep for short periods of time before waking and violently banging his head again. His parents were at their limits and could not take anymore, they were exhausted, no longer working all attention was on him. Could we help please? though we could say no. I was told to realize this child was up ALL night long. We would have him for 2 weeks as he had been accepted at a state facility, he was just waiting for the bed and the parents couldn’t hang on that long. OF course I couldn’t say no to that cry for help.

When the child got here, there weren’t just bruises, there were scabs! and Sores! all over his face  Poor baby! The amount of SIB was horrendous! I spoke with the parents and they were fine with me trying to get him to sleep in a bed. The first thing I try to do is change-up some of the things that children do to break the pattern they are in. We also started teaching him soft touch and took away the car seat completely.

The first night of course was rough for him. I sat next to him on the bed with him in a semi-sitting position, it took him 2 hours to fall asleep. he slept for 1/2 an hour.  this went on throughout the night. When he woke he would slam himself against the walls, closets bang his head on anything hard. We knew when he woke! By the fourth night he realized if he opened the bedroom door that would also draw our attention and he would seek us out in a more positive way as his room has an alarm on the door and window.  He likes learning the soft touch and is enjoying sleeping in a bed but has never slept through the night. Is still looking for reassurance that someone is there and going to respond to his needs. (His parents did too just not the way we did)

Each night he slept longer, after the fourth night, each night he fell asleep easier, faster, and in a more reclining position. By the 12th night He slept through the night. By this time, his scabs were mostly healed, he was using soft touches and very little SIB. Part of his issues were lack of sleep.  He left on March 2.

I had already agreed to take another child straight from the hospital that doesn’t sleep.  He came on March 2!  I got 2 nights of sleep! This young man is 7 he wakes up between 11 pm and 12:30 nightly.. and is up every fifteen minutes until 4:30 am.  then he sleeps for an hour. Whew!

Unfortunately sometimes parents don’t know what to do so sometimes its just training a child they have to sleep! This 7-year-old has ruled his roost from an early age. He got up his mother said ok what do you want to watch?  and what do you want to play? I know it’s hard, it really is. You get wiped out. IS it worth the fight? But…..

He’s aggressive as heck during the day, aggressive as heck during the night, get him to sleep maybe  you’ll see, that he’s the child you want him to be.

This guy is only 7. He has taken adults to the floor with his behaviors! He is strong! Start teaching him now what needs to happen so here we go again. Alarms on the door, he understands that. He opens the door to make sure he has our attention every 15 minutes throughout the night. We explain, “IT’s dark out we don’t play here my dear. we sleep, no TV” we tuck him in soundly and kiss his cheek again. this continues throughout the night over and over again. Training a child who has no concept that this is normal can be a challenge. He is getting it though.

A week ago I had 3 hours of uninterrupted sleep. Woo hoo. This showed progress. This week has been awesome. each night has gotten better. the trainings kicking in. He isn’t waking up until he hears others already awake most mornings now. I have gotten 3 full nights of sleep. His behaviors are under control from what they were, he can self manage much better. He went to grab my hair 2 days ago when my back was turned and let go on his own with no verbal prompt or physical cue. Self regulation is there now.

Most of the time I tweet at night after the children are in bed. Now that my body feels it can relax and get some sleep, I get in bed and nod off with my i-pad or phone in hand in the middle of a tweet. I know it’s from exhaustion of retraining the 7-year-old and having the crisis child before him. But this just shows how important sleep really is. IF you aren’t getting it then, your body may just want to catch up a little later. Not all of it Just a little.

I’m not saying all autistic children will sleep all night long, but the ones that don’t can be taught that they stay quietly on their bed and not affect others when it’s dark.

I have a 13-year-old that has had issues sleeping also. He sleeps most times. When he wakes early, like 4:30 he knows not to wake others and sits on his bed. He does not try to get up and play or watch TV or wake others.  (It helps that we lock toys in closets at night) His room door is not alarmed. However, we have motion detectors anywhere past the hallway. This helps keep him from breaking the rules.

We get children quite often with sleeping issues, we retrain them all the time. Some take longer than others but in the end they sleep most nights, the night through. When they do wake up, they learn not to wake others so it doesn’t affect others. Even then they only wake early not in the middle of the night reigning terror in the house and causing chaos.

Marie

If you have any questions or comments please feel free to leave them, I will respond as my time allows.

Autism & Socks!

Every day is a challenge, I learn something new or have a new “aha” moment with one of the children. Sometimes I will share those “aha” moments, other times I will share the random facts of Autism & other special needs  as I know them.  That happens when you live with a house full of autistic children. You don’t get to just live day by day going through your own life reaching your own goals, the goals you set for them become the goals in your life.

Even if they are minor achievements such as putting on a pair of socks in under 5 minutes.  Other parents with autistic children will understand what I mean, people without will shake their heads, scrunch their face and say “what?”

The issues our children face can be so overwhelming to them, and because we live with them and love them, the issues, then can overwhelm us if we are not careful.   The world at large does not understand this I have found. More about this another time, when I want to rant about people and ignorance about autism. Gotta love ’em all.

How can putting on socks be overwhelming? Well, have you ever put something on and it just didn’t feel right? When that happens I bet you just go pick something else out of your closet and choose not to wear it. Am I right? I bet you don’t have autism or OCD either then. Because if you did, once you picked those items out you would HAVE to wear them. Your brain would not accept that you do anything less. Your body hates you for it though, the sensory system is on overload and it feels so rotten but you know you have to do this YUCK YUCK YUCK!.

My 10 yr old little guy knows socks go on first then shoes. He also knows that right now, even though we have bought him several types of socks, none of them are going to feel “right” today. So he puts one sock on, takes it off, puts it over his toes, screams, bites his hands, takes it off screams some more and stares at it like it’s a snake. He is also OCD enough that he can’t change socks now that he has that pair in front of him, he has to plug through and finish with THAT pair of socks. He repeats this ritual multiple times each morning that socks are the issue and it can take him 15 minutes to put on socks.

Today it was his shoes.

Hello world!

Good Morning World! Here I come! Expect the unexpected, Together we’ll share a treat. Grab a cup of coffee, put up your feet!

I love Life! Life is Good! That’s my mantra, understood?