Discussing Autism

Having a child will change your life but one day finding out that your child has special needs, or better yet, Autism, can be so life altering that families can either pull together or be ripped apart.

Every family will eventually respond to an autism diagnosis in their own way. Because caring for a child with autism takes time, energy, patience, resources, flexibility, finances, and most importantly, a sense of humor. (more…)

AJ has never been one to pick up a ball for the fun of it…he usually picks up one in anger or disgust and then throws it. But man, does he have an arm. A strong left one and an even stronger right one.

According to eBeanStalk’s Physical Therapist, Deanie Barth, “A child does not simply wake up one day with the ability to accurately catch and throw and kick a ball, it is a learning process just like any other required skill.”
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Auditory Processing, like visual processing, can be difficult to diagnose. In fact, auditory processing most often goes hand in hand with visual processing disorder because they are both neurological disorders and the problems actually overlap in the areas of memory, discrimination, attention, and language. Most often, these disorders are treated simultaneously or if a child has one of the disorders but not the other he/she is treated with the same strategies that one might use for both.
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AJ is giving me a run for my money lately…not that I am complaining. I am actually a little proud. Why? Because he is acting like a NORMAL four year old.

Here is what has me perplexed. (more…)

I was talking to several moms in our special needs group the other day describing what services we were getting from our school and from outside services. We are getting nothing, BTW.
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Today is Christmas and for us it means AJ will be overwhelmed, overstimulated, and out of control because he just can’t handle it all.

Christmas is not a happy time for us. It can have its shiny moments but overall it is just too hectic for him to make any sense of it all. Remember, AJ does not have autism but he is dealing with the results of institutionalization, neglect, trauma, and has severe sensory integration dysfunction. We also believe that there are some other issues that we are dealing with but we may never know what those are.

What we do know is that Christmas is supposed to be about family. He is just starting to learn what family really means and he is sad about that. He is grieving his birth mother and wanting a sibling, which we told him is in the works. He loves his grandparents, his aunts and uncles (the ones far, far away in India and in Georgia) and the ones right here. He desperately wants to socialize but gets so overwhelmed that he just can’t. So, we escape to quiet rooms and try to calm him but it does not always work.

That is why I am hoping that this year he finds that one toy to latch onto as a security blanket. Last year there wasn’t one and there were just too many toys in my aunt’s basement for him to function. Maybe this year we will take his new slinky’s or the new Rainbow Waterfall. Perhaps those will work.

Merry Christmas!

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Is your little one afraid to see Santa this year? Is he overstimulated by the mall and all the glittering lights, afraid of all the people, conscious of every detail around him, ready to flee at the slightest movement of someone in line, refusing to put on that shirt and tie for grandma? In my search for tips on how to prepare AJ to visit Santa I only found two posts…This one and this one so it was obvious that it needed to be addressed.

Every parents’ dream is to get that beautiful picture of their son or daughter with Santa for the very first time. (Well, at least I know my dream was and I know that my mother pushes me to get my son all dolled up every year and take the most perfect posed shot I can.) But it is just not a reality for kids with autism or SPD, for children with developmental delays like PDD or anxiety.
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I have collected a series of articles for you, my readers, on how to survive the holidays with your children.

First, look at yesterday’s review post

Airport and Autism We have traveled several times with AJ and things have always gone smoothly (well, except when he had to potty during landing. That was our fault for not taking him earlier). We took the essentials: the DVD player, his weighted blanket and vest, his favorite toys and fidgets, several snacks and drinks (they allowed the drinks due to allergies), and his sleep medication (we pinpointed travel for night time). Our only issue was a night terror during one flight and because I was holding him (he does not like to be touched) it was not easy to calm him. He did great going through security and was easily calmed in other situations.
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What have your favorite posts been? It looks like you all want practical solutions to problems in the daily life. Here is a recap from the last 6 months.

How to Avoid Holiday Meltdowns: We have already entered our holiday meltdown mode… and the giggles and wiggles are in full force. The only saving grace we have found this year is plain ole’ quiet time. We have altered our holiday plans this year to include less family time, less busy on the go time, and a lot less lights and glitter.

I Want Candy, GFCF Solutions:…This is not just for Halloween! This came in handy just today when we were making our Gingerbread Train, a new holiday favorite of AJ’s. I chose all candies that were GFCF…gumdrops, wreaths, reindeer corn, peppermints, and even marshmallow santas (which were a big hit).

Aspergers and Top Model: Heather, from America’s Top Model, was certainly intriguing…and she made it a long way. But, was Top Model using her for her disability or did she really deserve to be there?

Jenny, Enough: Despite the fact that I like what Jenny had to say in the beginning the entire McCarthism Autism Vaccination Era needs to come to an end…Vaccinations do not cause autism.

A Successful Halloween: You all loved this post and I am assuming it is because it had advice on how to deal with the biggest kid holiday in the fall…how to allow your child to have fun without darkening his/her night. And, the good thing is that it is possible. Did it work?

Billing Codes May Prevent Autism Screening: Well, because we can’t let this happen, can we?

Fisher Price Lead Disaster: The post that started it all…well, after Thomas the Train collapsed the market. Make sure to check out my Lead Free Toys List over at My Two Boys and I still have two toy giveaways going on over there!

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Okay, I get it…you’re son is cured. We all get it. But have you ever considered that some of our kids aren’t? No matter what we do?

Have you ever considered that perhaps your son is cured because all you see are the good days, the good hours, the time not spent with the nanny?
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So, apparently I am “jumping on the bandwagon” in saying that my son has Institutional Autism. I have clearly stated from the very beginning of this blog that AJ does not have Autism, that he has not been diagnosed with Autism but rather, that he has been diagnosed with Institutional Autism.

I stated that, hmmmm, May 3? I believe that was long before all this Jenny McCarthy news, the Autism Trial, the Vaccine Debates, the Lead Toy Scandals (that cause toxicity), and so forth. Right?

Institutional Autism is not a classic autism, at least according to the leading Neuropsychologist in the field, Dr. Ronald Federici. It is a learned behavior disorder that mimics autism. When we consulted (via email) Federici two years ago he was very clear in stating that AJ met his criteria for Institutional Autism. However, he also stated that for a full diagnoses we should meet with him. We have also had another neurologist confirm that belief.

While abandonment and institutionalization most certainly has a profound impact on a child’s ability to develop trust, bonding and security in newly adoptive relationships, an emphasis needs to be placed on the integrity of the post-institutionalized child’s higher-level neurocognitive abilities with a comprehensive assessment regarding the availability of “innate skills” needed for bonding, attachment and the development of appropriate social interactional and reciprocal behaviors. While many children with post-institutionalized attachment disorders may display a combination of unattached or even indiscriminant behaviors (Ames, 1997), many post-institutionalized children display a very intense pattern of behavioral dyscontrol; aggression and violence; destructiveness to self and others; a lack of cause-and-effect thinking; indiscriminant affections to strangers as evidenced by being inappropriately demanding and clingy; or a pattern of social withdrawal, isolation and maintaining a self-stimulating posture. A principle complaint from parents adopting an older child is that the child may be out of synchrony with their environment resulting in difficulties in providing management, structure and organization.

The bold text above is what we experience on a daily basis (except affection to strangers)…along with
Severe Sensory Integration
Social deprivation
Self stimulation (ie: stimming)
Severe oral motor and feeding issues
Central Auditory Processing Issues are surfacing
Uncontrollable Rage
Age Regression (AJ is 4 but emotionally and mentally 2)
Dyspraxia related problems

Now, it is clearly stated in this article that “that institutional autism is not a medical condition, but rather a description of certain patterns of behavior that look like or are similar to what is observed in children with “real” autism. Some autistic-like behaviors may be, in fact, an adaptive behavior in an institutional setting, but become mal-adaptive in a family situation. And if institutional autism is a learned behavior, than adoptive parents have a hope that their child can learn new behaviors. And, indeed, there are instances when adopted children get rid of behaviors usually associated with the autistic spectrum.”

I have always questioned whether AJ has Organic Autism or if his issues are strictly the result of his time spent in the orphanage, or if his birth mother is to blame. For all I know that could be the real reason (and I am certainly not naive to that). If one would have taken time to visit the blog, or gather background information instead of jump to conclusions and claim I was “jumping on the bandwagon”…they would know our situation. Its nice to know that people do research though…

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Personally, I think we have a good thing going here. Since beginning his Chelation Therapy four months ago, AJ has changed. He is more verbal, less agitated, transitions easier, can now stand to go to the bathroom (and make it into the water almost all of the time), is hitting less frequently, and is much more affectionate.

He went through his stages…more crashing, yeast die-off, monster tantrums and screaming rages all day, and nights that he did not sleep because his body was going through something strange.

Dr. Rahul K. Parikh, a pediatrician and a fellow of the American Academy of Pediatrics, wrote in his article, The Truth about Autism, that when one of his patients came in two years ago requesting biomedical testing (similar to Little Pickel’s recent testing) that he did had to admit his mainstream medicine had little to offer them.

Then I respected his mother’s wishes and ordered those lab tests that I knew her insurance plan would cover (she chose an outside lab for the others). All of these tests turned out to be normal. The additional tests, which Andy’s family paid for, showed a question of some minor nutritional deficiencies. For this, Andy’s doctor placed him on about a dozen nutritional supplements, some of which cost up to $80 for a one-month supply.

On the recent Oprah show, Jenny McCarthy says that Chelation and biomedical “cures” are just what her son needed to recover from Autism. And, they are just what AJ needs. Right now I am undecided on whether or not I am going to vaccinate him again. I don’t give him the flu shot because its not necessary but does he need the rest? If I chose to not vaccinate I have to find a new pediatrician because she won’t see him unless he is vaccinated. Talk about Old School…

What do you all think?

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I’m taking the day off for a colonoscopy so I’m letting someone else take over! I’m leaving this up to Erma.

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 the 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.

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

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

“Rudlege, Carrie; twins; patron saint…give her Gerald. 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?” Ask the angel.

“I don’t want her to have too much patience or she will drown in 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 independence. 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 separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less than 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 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 mid air.

God smiles. “A mirror will suffice.”

I’m gettin’ tired
of unanswered questions
of items not being returned to their correct place
of smiles and laughter when I tell you no
of you not listening
of you not sleeping
of chalk marks on my cedar house and deck and screens and the dog
of toenail cuts on my legs from you grinding you feet into them
of mixing medicine into your juice
of you knowing I do this but accepting it as part of life
of you hurting the dog because its funny
of you getting mad because the dog gets upset
of night terrors every stinking night
of having to watch everything you eat
of having to watch you every second of the day…you’re 4…when does that stop?
of you hitting me
of you screaming because you can’t get your words out

Yes, I’m just getting tired.
But I love you so much that I would chose not to sleep to help you get better.

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Sure, every public situation is different, and so is every child. But, some strategies can be used to try and help autistic children in public situations. I am not quite sure where this initially came from but I got it from this site. It thoroughly explains the difference between a temper tantrum and a meltdown. The article also gives information on how to deal with a meltdown when you are in public situations…because we all need a helping hand once in a while.

I had to leave two stores last week and I have never had to do that before. My policy is that I am not going to let Little Pickel stop me from getting my errands done. However, he threw such massive tantrum/meltdowns that I had no choice but to turn around and go home. Hopefully you have better luck.

Autistic Meltdowns Vs. Temper Tantrums
If you need to explain a meltdown to someone who doesn’t have a child with autism, just define it as a bad temper tantrum, and let the topic go. It is unlikely that the finer points of a meltdown will be understood. But, if you mention the word to parents who have children with autism, you will get knowing and sympathetic looks. Rest assured, your child is not the only one who has these rather unique behavioral issues.

Temper Tantrums
A temper tantrum is very straightforward. A child does not get his or her own way and, as grandma would say, “pitches a fit.” This is not to discount the temper tantrum. They are not fun for anyone.
Tantrums have several qualities that distinguish them from meltdowns.
* A child having a tantrum will look occasionally to see if his or her behavior is getting a reaction.
* A child in the middle of a tantrum will take precautions to be sure they won’t get hurt.
* A child who throws a tantrum will attempt to use the social situation to his or her benefit.
* When the situation is resolved, the tantrum will end as suddenly as it began.
* A tantrum will give you the feeling that the child is in control, although he would like you to think he is not.
* A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.

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