From "Love That Max" : Top 20 Reasons Moms of Kids with Special Needs ROCK!

Love That Max: Top 20 Reasons Moms of Kids with Special Needs ROCK!
Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

Melt Downs

Last week Aidan had a huge meltdown on Wednesday and another the next day.  He had gone so long before that without having a meltdown - probably at least 6 months, maybe more.  I don't know what was different or what had been bothering him that made it so easy to set him off, but one simple little thing didn't go the way he expected it to and he fell apart. 

Wednesday (which was when the full moon was - could this have been the underlying cause?) the trigger was as simple as taking a lego toy away from him because he took it outside.  It wasn't a punishment, and he could still have it inside.  I explained to him that if he took it outside to play with it with his friend, that he could drop it and break it and even lose pieces.  He threw a mini fit and so I told him that he could come inside (it was bordering on a meltdown at this point, but I didn't recognize the signs).  He dried it up and went back to playing with Robby (the next door neighbor), so I thought everything was alright.  Not five minutes later, I heard him in the garage screaming his head off.  I went out there and he was crying and screaming about his lego toy.  He wouldn't tell me what was wrong, but he was obviously mad about something.  Once again, I told him he could come inside if he couldn't dry it up.  This time he didn't though, he only became more enraged.  Because of that I attempted to take his hand and lead him inside - of course, that didn't work.  His self-control completely dissolved at this point, and as I tried to pick him up to carry him inside he began to shriek and to hit and kick me.  It took me a couple of minutes to even manage to pick him up.  Stupid me, I still didn't recognize that this was a meltdown at this point. 

Once I got him inside, I put him in his room and closed the door.  Usually he calms himself down and cries for a little while and then is perfectly fine.  Not this time.  He began hitting the door, throwing things (trash can, toys, toy boxes, tried to throw the television), and screaming.  I went in and he started hitting and kicking me, so I held him - I finally recognized that this was a meltdown, but of course that didn't really matter at this point.  Once I got him to stop hitting and trying to throw things, I sat in the floor and he laid with his head in my lap and allowed me to rub his back.  He was still screaming and crying "mamamamamamamamamama" - not anything to do with me, this is just a noise he makes when he's extremely stressed or overstimulated.

This whole meltdown lasted around 30 minutes, and afterward he wouldn't talk or look at me.  He had calmed down enough that I felt it was safe to leave him in his room.  A little while later he came out and ate dinner and was talking and making eye contact again.  When I put him in bed, he apologized for being unhappy and throwing a fit, telling me he couldn't get control.  He was aware it was a meltdown, even if I wasn't.

The next day at school he had a meltdown as well, this one only last about 15 minutes according to the aide.  Apparently he couldn't sit down (he told me he couldn't), and when he melted down he told her (or rather screamed to her) that he couldn't get control.

I don't know what sparked this behavior.  He's been perfectly fine since then.  I have no idea what happened to be able to prevent it in the future.  Maybe it was my stress over school and planning a bridal shower. Maybe it was the full moon.  Maybe it was a string of events over the previous several days that none of us could have known would lead to a meltdown.  Whatever it was, hopefully I'll recognize earlier in the meltdown next time, that it IS a meltdown instead of fueling it into a bigger meltdown.

Self-fulfilling Prophecies and Service Providers who take advantage of parents.

It seems so sad to me that there are doctors who, when they diagnose a child with autism, would tell the parents that their child will never speak or be potty trained or live on their own.  It seems sad to me when parents mourn their child's diagnosis as if they were told that their child had died or would die next week.  Autism is not a death sentence!  How many children's parents gave up after being told their child would never say "I love you, Mommy" or be in a normal classroom or any of the other things that other parents take for granted?  How terrible!  It seems like this is a self-fulfilling prophecy.  If you and your child are told that what they have is all that is possible and they just have to deal with it, then isn't it possible that they will never try for better? 

What's worse is that there are doctors who will twist it and make it worse.  "Unless you take your child to a speech therapist, an occupational therapist, a behavioral therapist and take these medications and do chelation therapy and bariatric therapy and eat only certain kinds of food, then your child will be terrible and never talk to you and can't accomplish anything.  Parents spend their entire lives trying to make a better life for their children.  It's what we do.  And when we're faced with a problem we didn't expect then we ask professionals for guidance.  But what's terrible is when these professionals take advantage of us and our desire to do what's best for our children.  We spend thousands or millions of dollars on the various therapies and classes and diets that we're told will help.  But does it really help?

I can't afford all the different therapies that might benefit Aidan.  When he was diagnosed I was a single mom who made under $30k a year.  I didn't understand the GFCF diet, and didn't really see how I could consistently change his diet across all the different caretakers he had (myself, my mom, his babysitter) and even afford to buy the best possible foods for him.  Even though the doctor that diagnosed him said he needed speech therapy, I couldn't get the school system to agree, so I had to work with him on his speech.  I couldn't get them to do occupational therapy either (teaching him basic life skills like potty training or buttoning his pants or throwing and catching a ball) so I had to teach him those things. 

The thing is, I think I've done a pretty good job with him between myself, my family and most recently the amazing people at his school.  He talks more than ever, although you can't always understand him.  He's completely potty trained (which a year and a half ago I worried might not happen) and can button his own pants.  He's learned to ride a bike and throw a ball and play video games and play make believe.  It's all the product of a lot of hard work: his AND mine as well as my parents, Jeremy, our family and friends, and his teachers most especially Miss Annie. 

I guess I just feel like a lot of doctors and service providers and Jenny McCarthy's see parents who are desperate to help their child, and they take advantage of their fear and helplessness.  As parents we're supposed to be able to fix everything and when we can't then we feel like we're letting our children down.  There are people who prey on that and I really think they stink for it.  We're told our child can only be "cured" if we do xyz therapy and abc diet and take them to Dr. So-n-so, so we do what we're told.  Maybe sometimes the therapy is necessary, I don't deny it, but I think that a lot of it is ridiculous and experimental and outlandish and just a way to make money off of desperate people.

I'm done ranting now.

Autism Awareness

April is Autism Awareness Month!  I'm both excited and saddened that we get our own month now.  It's great that we have a chance to educate people and gain support for our cause, but it's sad that Autism Spectrum Disorders are common enough for us to get an entire month dedicated to our children.  In honor of the month I've gathered some information for those of you who don't necessarily know all the in's and out's of autism.  My information comes from the CDC and Google Health, but you should also check out Autism Society of America.  Don't forget to join us Saturday morning for our Autism Walk - or find one in your own hometown if you aren't in Huntsvegas!

And to all of you who have given us so much support since Aidan's diagnosis, thank you!

Prevalence

• It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD.
• ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls.  However, we need more information on some less studied populations and regions around the world.
• If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD.  Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
• Studies in Asia, Europe and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%.

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• Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.

Economic Costs

• Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million.
• Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater.

Signs of Autism (there were a lot of "a-ha!" moments the first time I read these after Aidan was diagnosed)

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. Children with autism typically have difficulties in:

• Pretend play
• Social interactions
• Verbal and nonverbal communication

Some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive type of autism.
People with autism may:

• Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes)
• Have unusual distress when routines are changed
• Perform repeated body movements
• Show unusual attachments to objects

The symptoms may vary from moderate to severe.
Communication problems may include:

• Cannot start or maintain a social conversation
• Communicates with gestures instead of words
• Develops language slowly or not at all
• Does not adjust gaze to look at objects that others are looking at
• Does not refer to self correctly (for example, says "you want water" when the child means "I want water")
• Does not point to direct others' attention to objects (occurs in the first 14 months of life)
• Repeats words or memorized passages, such as commercials
• Uses nonsense rhyming

Social interaction:

• Does not make friends
• Does not play interactive games
• Is withdrawn
• May not respond to eye contact or smiles, or may avoid eye contact
• May treat others as if they are objects
• Prefers to spend time alone, rather than with others
• Shows a lack of empathy

Response to sensory information:

• Does not startle at loud noises
• Has heightened or low senses of sight, hearing, touch, smell, or taste
• May find normal noises painful and hold hands over ears
• May withdraw from physical contact because it is overstimulating or overwhelming
• Rubs surfaces, mouths or licks objects
• Seems to have a heightened or low response to pain

Play:

• Doesn't imitate the actions of others
• Prefers solitary or ritualistic play
• Shows little pretend or imaginative play

Behaviors:

• "Acts up" with intense tantrums
• Gets stuck on a single topic or task (perseveration)
• Has a short attention span
• Has very narrow interests
• Is overactive or very passive
• Shows aggression to others or self
• Shows a strong need for sameness
• Uses repetitive body movements

March Report Card (First since December)

We got Aidan's report cards back today (he gets one for his autism class and one for kindergarten), and he's done great!  I figured you would all love a run down of his progress this year.

Annual Goal Progress Report

Goal: Aidan will select appropriate voice level when interacting with others with 90% accuracy by 4/22/10

• Progress - 2 (Some progress made)  
  
• Extent - 2 (Anticipate Mastery)
• "Has made progress but on some days still has to be reminded."

Goal: Aidan will following one- and two-part oral direction with 90% accuracy by 4/22/10

• Progress - 2       
• Extent - 2
• "Has done very well following directions.  When he does not want to he has to be prompted."

Goal: Aidan will exhibit appropriate social skills by controlling his excitement, using an inside voice, use appropriate social communication skills and will make and keep friends 80% of his school day by May of 2010 

• Progress - 2
• Extent - 2
• "Has made friends in kindergarten.  Still has to be reminded to be quiet at times.  Will get upset if staff prompts him or shows him a sign to be quiet.

Goal: Aidan will demonstrate appropriate behavior by following 2 step directions, using an inside voice, remaining calm and will ask for a break/his music when he feels himself becoming over stimulated 3 out of 4 times by May of 2010.

• Progress - 2      
• Extent - 2
• "Has done very well asking for breaks and his ear covers to get away from the sound before it gets too loud for him."

Goal: Aidan will improve his basic living skills by demonstrating the ability to fasten and unfasten hook and button closings on his clothes and by being able to catch a ball that has been tossed to him from a few feet away 3 out of 4 times by May of 2010.

• Progress - 2
• Extent - 2
• "He is able to catch a ball and has had no issues buttoning and unbuttoning."

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Kindergarten Report Card Assessment

• S (Satisfactory - 80%-100%) - Identifies Letters: (they give a list of all the ones they expect him to know, large and small, but let's face it, he knows ALL of his letters little and big...)
• S - Identifies beginning sounds: M, T, A, S, P, C, I, B, N, R, D, K, F, O, H
• S - Recognizes high frequency words: I, am, the, little, to, a, have, is, we, my, like, he, for, me, (didn't know "with"), she, see, look, they, you, of, are, that, do, one, two, three, four, five
• S - Identifies numerals: 4, 8, (thought 13 was 31), 1, 3, (14 was 41), 9, 15, 0, 12, 6, 2, 11, 7, 10, 5
• S - Can count to 30 --- counted to 66
• S - Uses drawing, scribbling, inventive spelling to express thoughts about personal experiences.
• S - Spells name correctly
• S - Handwriting: prints letters, numerals, and first/last name correctly
• S - Understands relationships: Extends a pattern, rhyming words, opposites
• S - Identifies coins: penny, nickel, dime, quarter
• S - Obeys school rules
• S - Uses good manners
• S - Gives best effort

He also got an "S" in music and PE, and of course already knows his colors, and shapes.

____________________________________________________________________________

So obviously we're quite proud of the kid.  He's so smart.  I worry that they'll want to send him back to Creekside to do Kindergarten again except in the mainstream classroom.  I really think that's a bad idea for a lot of reasons.  First of all, he's way too smart and too far along to do kindergarten again as his report cards show - he'd be terribly bored and would have poor behavior and attention span because of that.  Also, Creekside doesn't have the resources that Johnson does - they only have one special ed teacher and a couple of aides.  I believe Aidan needs to start out where he'll leave off this year, doing about an hour or two in the mainstream classroom WITH an aide and be in first grade.  He needs to work into a full day in the mainstream class with an aide, and then slowly have the aide with him for less and less time each day.  We'll have an IEP meeting at the end of April or beginning of May and you can bet your britches I'll be insisting that things happen the best way for Aidan to succeed.

Routine Interruptions

This week I'm reminded of how tenuous Aidan's hold on a normal life is.  Before Spring Break he had sooooo many days in a row and was mostly really easy to deal with at home too.  During Spring Break other than the two of us getting on each other's nerves a bit, he still did great.  But when he went back to school this week the feces hit the air circulation device so to speak.  He's had two bad days in a row.  Yesterday he was hitting kids and throwing things at them and not behaving well in general.  Today he was talking back to his teachers and pushed one of his classmates in the hallway because he wanted to be the line leader.  Ms. Annie says that they're doing SAT's this week and that the mainstream kindergarten teacher was out today.  Yesterday Ms. Annie was gone part of the day on a field trip. 

Aidan isn't great at dealing with transitions or changes in his routine.  It's one of his weaknesses.  Of course, he can't let that weakness rule his life or affect his behavior forever.  He's got to learn how to be flexible and control his own reactions to the changes in his life.  The only way I know how to help him do this is with consistent consequences no matter what the reason for his poor behaviour is.  Yesterday I gave him a warning that if he had another bad day at school he would not be allowed to play with his DS today and would lose his allowance that he gets on Sunday.  He's been doing great with helping out around the house and keeping his room clean because he gets a weekly allowance when he meets the requirements for earning it.  I explained to him that school was another of his responsibilities and he had to be good there just like he had to feed the kitties and keep his room clean in order to earn his allowance.  Today when he had a bad day and was told he wouldn't be getting to play with his DS or get his allowance on Sunday, he whined a little but seemed to understand that his actions had consequences and the consequences were fair.


Figuring out how to handle (and help him handle) the major and even minor changes in his life and his routine is quite a hurdle to jump, but I think we'll make it.

Autism Awareness Card

I designed these cards for those of us who know and love someone with autism and sometimes have to deal with the funny looks or the unwanted advice from people who don't know any better.  If you'd like me to make you some, let me know and I'll be happy to, I just have to buy the actual paper to do so and haven't gone to the store yet.  Of course I would replace my email address with yours.  If there's anything you think I should add, let me know (not sure where I'd fit it in, but I'm sure we'll manage).

What's New?

Just a quick update on what's been going on the last few weeks in the wonderful world of Aidan:

• Aidan has been spending as much as an hour at a time in the mainstream kindergarten class, with an aide.
• Because of his difficulties focusing and remaining calm, we are considering whether he would benefit from ADHD meds or a change in his diet.
• Other than the concentration and hyperactivity, Aidan has had a long string of great days at school and his attitude has been much more manageable during this time, which is a great relief and much more enjoyable.
• Aidan's class has been practicing and preparing for the Special Olympics in April.  Because Aidan is not in second grade, he is not able to participate, and is technically not permitted to even go and watch.  Miss Annie (Aidan's teacher in the autism unit) spoke with the person in charge and got permission for Aidan to attend even though he is still not going to be allowed to participate.
• A couple weeks ago, Aidan decided he wanted to be an Olympic ice skater.  Jeremy and I went ice skating a couple of times without him (don't want to break our own necks trying to keep him from breaking his), and then this past weekend we took him skating.  He did great - started out holding on the wall, then onto a traffic cone, then for a while he skated without either.  I'm so proud of him.  He wasn't sure at first, but has decided he wants to keep learning to skate.  He doesn't want official lessons though, he just wants me to teach him for now.
• Today we discovered that Aidan has his first loose tooth!  It's official, he's finally becoming a big boy.

Ironic, but not in a good way.

Autistic Child Ruins Marriage He Was Born to Save (The Onion)

HOUSTON—With the challenges accompanying his developmental disorder widening the already vast gulf between his parents, autistic child Evan Thomas, 3, continued this week to destroy the failing marriage he was brought into this world to save.

Evan, who through the very act of being born was entrusted with the task of resolving lingering conflicts, soothing deep-seated contempt, and restoring intimacy to Mark and Sharon Thomas' long-strained relationship, has thus far utterly failed in his assigned duties, sources reported Monday.

"It's so much work taking care of Evan, and Mark just refuses to help out as much as he should," said Sharon Thomas, who endured a long, agonizing childbirth to put an end to the couple's constant bitter arguments. "It's so frustrating. I don't get any time to myself because Evan needs attention like 24 hours a day."

"I never asked for this," Sharon added

According to sources, Mark Thomas, 32, had always wanted a healthy, happy, completely normal son to provide a quick and easy fix to all of his marital problems. However, rather than allaying their trust issues and instantly making everything all better, Evan has reportedly driven a deeper rift between his parents by prompting fights about who is to blame for his condition.

"The doctors are constantly telling us that it's not anyone's fault, but if you'd ever met Sharon's brothers, you'd know that something's not quite right on that side of the family," Mark said. "We probably shouldn't yell in front of him as much as we do, but he doesn't really pay much attention and it honestly doesn't seem to bother him."

"In fact, nothing seems to bother him," Mark continued.

Although Evan was only diagnosed with autism six months ago, Mark said it was clear right after bringing him home from the hospital that something was wrong with their son, since their lives did not take a dramatic 180-degree turn for the better, lingering disputes did not just melt away, and years of underlying tension were only brought into sharper focus.

The child, who according to his parents rarely smiles or acts cheerful, has left many in the household concerned that he's not committed to mending the broken relationship. Moreover, during the past three years, Evan has reportedly done almost nothing to curb Mark's controlling nature or Sharon's cruel emotional abuse.
Evan has also failed to utter the words "mama" or "dada," thereby ruining any chance his parents might have had at forging an instantaneous, all-healing bond.

"Nobody told me I'd be so exhausted and cranky all the time," said Mark, who had anticipated that a son would create the mutual respect that his marriage has always lacked as opposed to making him feel overwhelmed and trapped. "Now, I just get nagged about never dealing with Evan after I bust my ass at work all day."

Mark and Sharon also complained that the highly structured schedule they're forced to keep to prevent Evan from "acting up" has severely strained their social life, causing them to miss a recent Super Bowl party at a neighbor's house that all of their friends without special-needs children were at.

In 2006, before giving birth to Evan, the awful couple attempted to salvage their relationship by purchasing an American pit bull terrier puppy. But the dog, who was reportedly a real pain to take care of, lacked the discipline to put in any work on their miserable marriage and always demanded too much affection.
Family members told reporters they weren't surprised Evan has not yet managed to transform the couple's dysfunctional marriage into a healthy and loving one.

"Oh God, they should never have had a kid," Evan's grandmother Janet Harmon said. "She should have gotten her tubes tied like she threatened to do in the first place."

Mark and Sharon said they were currently trying to get pregnant again in hopes that a new baby would take off some of the pressure of raising Evan all alone.
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I love how many articles blame marital problems on special-needs children.  It's so painfully ironic.  Of course, it's much easier to blame all the problems in your life on a child who has no choice or control over it, rather than take personal responsibility for your life sucking so bad.  Grow up people.  Really?  I couldn't even find this article funny, it's just too true for so many people.

Autism is a Gift

I grew up watching and reading X-men.  In that world, humans had "evolved", via mutation, to another level.  Normal, unevolved humans considered the mutants to be freaks and disabled.  Because of their superhuman abilities the mutants often had a very difficult time functioning in the real world.

Sound familiar?

In that world, our children would be taken in by Dr. Charles Xavier and their abilities would be honed and they would be taught how to use them to change the world.  Their "sensory integration disorder" would be superhuman hearing and sight and touch and taste.  Their way of thinking in pictures or patterns would be such an assett and we'd see neat little montages of how their brains worked. 

Autism is not a punishment, a curse, a disability, a disease.  It is a neurobiological change to the human body and brain that results in a different or better set of abilities.  Our children don't think like us, they don't experience the world in the same way we do.  Because of this, we label them as "disabled" and give them therapy.  How can we take the knowledge that these children are different and possibly BETTER and instead of trying to change them and make them more like us, help them to take advantage of the way they see and think and feel?  The differences they could make in this world could be profound. 

Where would we be today with Mozart, Van Gogh, Einstein, Newton, Tesla?  They would likely be diagnosed with some Autism Spectrum Disorder today.  Perhaps that label should lose the word "disorder" and find another word that still sets them apart, just not in a negative way.  I'm not saying we shouldn't teach our ASD children differently - we obviously should! Just like we offer different opportunities to a child who is phenomenal at sports, and we put a child who is extremely gifted in the advanced classes, we need to make sure we're not trying to change our children to make them more like us.  Maybe we should be trying to be more like them?  Maybe we should change the world to fit them, instead of telling them they should change to fit the world.