PLEASE is not a **magic** word

We are halfway to Baltimore to see a specialist at Kennedy Krieger and I realize that I've forgotten my old laptop, the one I've loaded Lego Digital Designer onto (seriously cool and FREE program for all you Lego lovers out there...I'm gonna put the link at the bottom because you need this). Around the same time my sweet Adam realizes the same thing. Cue meltdown. He is disappointed, I totally get that. I've got the mom fail issues kicking into high gear and he is in the backseat sobbing,

"Please, Please, Please PLEEEEEAAAAAASSSSSEEEE go home and get it!!! I said please! I used the magic word, PLEASE!!!!" 


There was just no explaining to him that I appreciated his manners but there was just no way we could turn around and get the computer, we would miss the appointment. I could not interest him in a DS, an iPad or even my phone! His little heart was set on the computer and his design software. And no, as much as we want it to be PLEASE is not, in fact, a magical word that means you get whatever you ask for when you use it.

So now it is time to uninstall the mommy program, <whats the magic word?>

I've said it a thousand times, I've said it recently and now I need to stop saying it because:

1. my kids are literal, they actually believe this word could contain magical properties that makes the impossible happen.
2. if you've got an child with Autism you know, these kids are SMART! Verbal/Non-Verbal/Sign Language/PECS/Black Marker on Loose Leaf Paper you have taught them to say please and it is a glorious thing when they use it! (Seriously, write it in the baby book, its that huge!) From the first instance when you gave them an extra M&M or a few more minutes on the computer because they said please, they totally owned you. 
3. please is not a magical word, it is a PROPER word. We use it for manners, not to get what we want.
4. re-read 3 again.

Yesterday I attended a Brown Bag Series lunch with the topic: Managing Difficult Behaviors in Autism. I love these things, they are free and no matter how many years you've got in the school of Autism (seriously, can I get a degree in this?) chances are you will learn something new or you will remember something that you've learned before but forgot. This blog post is courtesy of a question asked by a fellow ASD mom who's child would tantrum when told no and would then yell, "but I said please!" Just like my Adam did in the car last month. The reminder I got from this lunch was to break things down and look at the pieces.... A-B-C Activity. So using sweet Adam as an example:

A (Antededent- before): I forgot the laptop, he wanted the lap top.

B (Behavior): Meltdown, yelling PLEASE!!!!!

C (Consequences): He got offered any other electronic device he wanted, he got my undivided attention and my apologies and promise to never do it again.

Is C realistic? HECK NO! I am totally going to forget that computer again, probably soon.

Sounds like its reality check time in this Lunatic Autism Mom's home..... just because you want something (no matter how badly) you cannot always have it. (examples: climbing on the roof, driving the car, eating only chocolate cake for a week (but YUM!), giving away mommy's cat because she scratched you, I could seriously go on for days here).


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Do you LOVE Pinterest? Yeah, I'm totally obsessed. If you want, check out &/or follow my AUTISM board! I pin things like Autism sayings, Autism products that I love, other sites that I want to read some day (in my copious amounts of spare time) and other stuff! Here's the link:


My Lunatic Autism Pinterest Board


And here's one of my favorite sayings from that board that is sooooooo applicable to this post!

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LEGO DIGITAL DESIGN SOFTWARE-- free!!!  <--click this
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Admin stuff....credit due!

It has come to my attention that some people online are removing tags and effectively stealing artwork from Autism Creations. I love AutismCreations and you have seen their art on this page as well as my Facebook page. Just in case I ever inadvertently implied that their work was my own, I want to make it 100% clear that I have never created any autism art outside of cutting puzzle pieces with my cricut and gluing them to frames, wreaths, cards etc. I, in no way have the kind of graphic talent it takes to create work like Autism Creations. It is incredibly frustrating to create something only to have it stolen so I wanted to take some time to share this info with you. I would be deeply saddened if Autism Creations stopped sharing their work with us all! Check them out on Facebook, you will be amazed at how much they have shared with us all and don't forget your manners and drop a Thank You and a share when you use their stuff but most importantly always give credit where credit is due!

There&apos;s an app for that...

Not an exceptional one but apparently
I can use the blogger iPhone app on my iPad to send more Rantings and Ravings! Pretty cool, but seriously blogger.... How about an iPad app because I seriously hate this keyboard! Stayed tuned once I have my phone charged, we will see if there is an android app too! Ain't technology grand?

OOPS!!!! Long time, no post....

It's not that I didn't WANT to make a blog post, it's not that I didn't have IDEAS for a blog post (I had tons!), it's that I never found TIME to make a new blog post!!!  I've missed you all and I've missed this page.... so..... no matter what this is getting posted today even if there is bad grammer, horrible punctuation and disjointed thoughts! And here are some disjointed thoughts now.....

I know I've posted before about "I Hate Autism" days and now I am revising that because I think there needs to be multiple parts to dislike about Autism:

1) I hate the work that comes with a child that has Autism, the scheduling, the paperwork, the calls from the school, the IEP meetings, and all the piles and piles of paper that goes with every meeting, doctor, educator, therapist, non-profit group, resource, grant, ans insurance company. It is just piling up, falling over and overwhelming my desk at this point and this isn't even the BUSY time of the year for this stuff! (That comes at the end of the year, prepping for summer schedules and the next school year)

2) Everybody always wants something from a parent with a special needs child. The doctors want bubble forms and copies of every evaluation. The school wants input forms, copies of every evaluation and multiple fundraisers. The non-profits want $$$money$$$, when are they going to realize that it is ME applying for those grants and rolling access funds? We are the people who are requesting the MONEY! It would be foolish to send in a $100 donation and then request a $200 grant for music therapy doncha think???

3)  Of course there is just the plain, old, Autism Sucks days where you receive 2 calls from the school, you pick up a wild child from his classroom when you remember quite clearly dropping off a pleasant boy, the assessment sheet says, "hit a teacher, put hands on a student, sent to support", you make a break for the peace and quiet of home only to find that the internet is messed up and all calming strategies are shot to hell because 99% of them rely on internet availability. Less effective calming strategies are put immediately into place but will take at least twice as long as "screens" but is far far better than nothing.

Now... you all know I try my best to maintain a positive attitude about life always. Some days are great, some days are 1/2 great and some days suck royal. Sometimes its more important to know WHY something sucks, understand that there just isn't a thing you can do about it and work to get past it the only way you can. For me today that means, the stack of paper on my desk can fall over if it wants, it will still be there tomorrow. Funding requests from Autism Speaks, DAN!, NAA, ASA and the like will more than likely be passed into the trash bin unopened. I will revel in the silence of my house while the boys are at school and prepare myself for their arrival in the car at 3:15 with lots of noises, complaints, requests and kisses. I will remember that not all days are all bad and that sometimes you just have to focus on the good and let the bad float away in the nighttime.

Bedroom Cleaning.... Lunatic Style

This comes from a reader question (LOVE THAT!) How do you get your child to clean his room?

Here is my take on kids' room cleaning... If he doesn't do it then I have to therefore every frustrating baby step I take in the direction towards his independence is one more step towards one less thing I have to do.

With that goal in mind, here are some steps which **may** help get your ASD kid(s) cleaning their room! I'm hoping and wishing right along there with you!!!! You will have to repeat steps again and again, I've taken literally months almost years doing the same step over and over. My fall down is consistency and regularity, maybe you'll be better with that and have results faster!

1. Clean his room with him in there. Don't expect any help but talk about his toys and favorite clothes as you pick them up. If he helped in any way... Big praise! "Thanks SO much for helping me! You made this job so much easier!!!"

2. After that try parallel cleaning, do it together! Pick up a shirt and ask him to pick up a shirt then put them away (or in the hamper) at the same time. Keep talking, "Where do you think this goes?" "Is this clean or dirty?" "Where do we keep the cars again? I forget". Maybe even make a game of it, "I've found a red shirt! Can you find a red shirt?" "I've found Thomas the Tank Engine, can you find Percy?" Be careful here, this could set up an anxiety situation if they can't find what you are suggesting. Maybe only suggest things you can see for yourself. 

3. After that hand over hand, ask him to pick up his things, hand stuff to him if you have to, continue to talk your way though where it goes.

4. Sit on the floor and talk him through doing it himself. At this point, you've already got the dialog, there isn't going to be any new words or requests thrown his way. Nothing unexpected unless you are willing to help, he may find comfort in the routine at this point. It took a while to get through this one for us, we were doing an in-between steps for a while.

5. At last! Just keep him company while he picks it up and helps if he asks. It seems to my boys that one of the main reasons why they don't clean their room (or play by themselves in the basement) is because they don't want to be alone. It isn't that they can't or won't do the task they just don't want to do it alone. 

6. I think the final goal will be for him to clean it himself with a spot check at the end.

All that said, we are near the end of the process with my 9 year old (and it's taken 7 years to get this far) and we are somewhere in the middle for my 7 year old who is more stubborn.

As always, any suggestions you have I can absolutely add! Leave a comment and let me know what works for you! Everything on this page is working documents and I would love to share your ideas!

GOOD LUCK!

HELP! I think my son has Autism, where do I start?

Its sad to say that is a common email or call that I get and always I am happy to help. I would like to take this blog post and turn it into a little mini resource guide for all my friends and friends of friends who have contacted me recently. I fear I have not been able to dedicate as much time as I would like to every response and with these links, I should at least be able to catch up on giving these friends some of the info I have promised. 


First of all, relax, take a deep breath. The common thread I get in email is a sense of panic, very understandable panic. It was in panic 8 years ago that I found myself carting Cameron to preschool 5 days a week, speech 3 days a week, occupational therapy 2 days a week, visiting with the developmental pediatrician once a month (an hour away), making plans to contact a list of neurologists and specialists and buried beneath a stack of Autism books 20 high on my nightstand (and in the bathroom, in my car, my purse, my staircase, my ottoman and oddly enough once in my freezer). Every single person who has contacted me is a very dedicated, level headed and intelligent Mom and I know they will do what is needed eventually, but (please hear this) you don't have to do it ALL RIGHT NOW. 


PRE-DIAGNOSIS- You are worried that something *may* be wrong. Okay, don't fight your mommy gut but also don't jump to "worse case scenario" (Autism). There are many reasons why a child may act they way he/she does and if you are worried please see below:


Talk to you pediatrician. This is the doctor who has the most time with your child, he/she has been watching them grown from infancy to now so they are always a good first contact. The word of your Ped is not the final answer though, I will caution you in that. I was worried about Cameron at his 1 year visit and was completely blown off by our pediatrician. I found a new one and don't regret that decision one second. The ped cannot give you a full diagnosis but they can point you in the right direction for your local area. They've seen this before and will have a host of referrals for you. This may sound like a step you can skip but I think it is an important one because of the referrals, keeping everyone on the same page, having him prepared for any blood work you might have to request and you probably already have an appointment set up anyway since this is the doctor your child sees the most often. Specialists can take 6-8 months to schedule, you can usually see your primary doctor within a month. Use the resource.

Check out the signs of Autism. DO NOT GOOGLE 'AUTISM'!!! I cannot stress this enough, Google will give you some truly horrible sites, please wait to overwhelm yourself with that later on when you can more easily filter out the fact from the crap. Answering no to all of these does not mean your child doesn't have Autism, if you are still concerned contact someone to do an evaluation. Answering yes to all of these also does not mean your child has Autism. It means your child has some symptoms of Autism, a formal evaluation is necessary to determine actual diagnosis. The test most commonly used is the ADOS and is a play based test for very young children and is more visual and question based as the child gets older.

These are the signs of Autism:

No big smiles or other warm, joyful expressions by six months or thereafter

No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter

No babbling by 12 months

No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months

No words by 16 months

No two-word meaningful phrases (without imitating or repeating) by 24 months

Any loss of speech or babbling or social skills at any age

Contact a State Agency. I think every state has an early intervention resource, in Maryland it is called Infants and Toddlers. ANYONE can contact them for an evaluation, for any concern. Initially I called them for a speech concern and then we went forward with the Autism Evaluation once it became apparent that the speech delay had a cause. Once your child is school age, schools have resources to do evaluations as well. In Maryland it is called Child Find. I, personally, don't put 100% faith in the evaluations done by state agencies but it is a good step in the right direction. As before, you will get able to get in to see them within a short time frame (I think they have to contact you and meet with you within a month-- I will verify that though), a specialist will take far longer. Go ahead an contact both at the same time if you wish.

Consult a specialist for diagnosis/treatment. Typically you start with a Developmental Pediatrician who can give a full evaluation. Additionally you might be able to contact a Neuropsychologist (with a diagnosis, you'll probably meet one anyway). A Speech Language Pathologist might be able to do an evaluation depending on the scope of their education. A Pediatric Psychologist might also be able to do an eval as well. 

I will tell you that our trip on the Autism Highway looks like this:

1. Pediatrician (blown off, waited 6 months)
2. Infants & Todders (Speech Eval)
3. New Pediatrician (who wanted to know why we hadn't already called I&T, we already had)
4. Diagnosis by Psychologist at I&T (given state funded Speech, OT and Classroom instruction)
5. Additional Speech Therapy (private)
6. Second opinion by Developmental Pediatrician (private)
7. Additional OT (private)
8. Third opinion by Developmental Pediatrician (private- highly regarded doctor at the Center for Autism and Related Disorders at Kennedy Kreiger who was an ass but gave us good information). 
9. Child Find (the school had to accept his diagnosis)
10. Special Education PreSchool
11. Behavioral Psychologist (private)
12. Special Program with Inclusive opportunities on grade level class room.  
13. Psychiatrist (medication trials)

So far so good... I'm sure I am leaving something out though. I want to follow this up very very shortly with another blog post, "Great, now we have a diagnosis, NOW what do I do?" In the interim... here are some links for Pre-Diagnosis AND Post-Diagnosis that may be helpful. 

The Signs of Autism- Autism Speaks

http://www.autismspeaks.org/what-autism/learn-signs

Developmental Milestone by Age- Autism Speaks

http://www.autismspeaks.org/what-autism/learn-signs/developmental-milestones-age

Aspergers- Autism Speaks

http://www.autismspeaks.org/what-autism/asperger-syndrome

An AWESOME downloadable 100 day kit, what to do once you have a diagnosis- Autism Speaks

http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

Aspergers Kit downloadable- Autism Speaks

http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit

What is the ADOS- Wikipedia

http://en.wikipedia.org/wiki/Autism_Diagnostic_Observation_Schedule

Maryland Infants and Toddlers Program- Maryland Department of Education

http://www.marylandpublicschools.org/MSDE/divisions/earlyinterv/infant_toddlers

Maryland Infants and Toddlers Contact list by county- Autism Connect MD

http://www.autismconnectmd.org/intervention/infant_toddler.html

Maryland Child Find Contact List-Maryland Dept of Ed.

http://www.mdecgateway.org/olms/data/resource/3459/Child%20Find%20Dir.pdf

C.A.R.D (Center for Autism and Related Disorders)- Kennedy Krieger Institute

http://www.kennedykrieger.org/node/4846

I will put a resource list on the Rantings Facebook page and will add to it periodically. In the interim, keep sending me your questions... I'll either answer them personally or I'll put them in a blog post. A LOT of people have the same questions and I am happy to answer them all. Hang in there, we're all in this together!

Individualized Education Plan: Lunatic Autism Mom

Individualized Education Plan (IEP)
Name: Maggie (aka: Lunatic Autism Mom)
Agency: House on the hill, the one with the weeds in the flower beds.
IEP Team Meeting Date: 08/29/11

Participants: Maggie (mom); Rob (hubbie); Cam (ASD kid #1); Adam (ASD kid #2)

Eligibility: C-Section 2001 & 2004; ASD Diagnosis 2004 & 2007

Primary Disability: Autism Induced Lunacy (AIL)

Supplementary Aids, Services, Supports: Medication as prescribed, Weekly Sanity Checks with a professional, Spousal Support, YMCA, Husband's Salary.

GOALS & OBJECTIVES:

Goal #1
The Lunatic Autism Mom will keep everything in the calendar most at her disposal (phone) and will synch it to the household electronic calendar at least weekly.
by: 9/1/11
Resources to help meet this goal: This will be coordinated through the support of helpful hubby in ensuring that the technology "talks" to one another and by keeping the phone at hand at all times.
**This goal is 99% completed**

Goal #2 
The Lunatic Autism Mom will stay home one full day per week with the exception of driving the kids to and from school, no exceptions will be made for any reason.
by: 10/1/11
Resources to help meet this goal: Lunatic Autism Mom will chose one day per week, prior to that week, and will schedule that as her HOME day. She will not brush her hair, will wear sweats or pjs to school drop off and will, in general, be too embarassed at her attire and appearance to step foot out of her car. This day can be spent accomplishing long over-due tasks (painting), catching up on housework (laundry) or allowing herself to be sick when the fever is over 99.9 degrees (sleep).
**Week 1 HOME day is currently scheduled!**

Goal #3
The Lunatic Autism Mom needs more energy and needs to get in shape.
by: 9/1/11
Resources to help meet this goal: Lunatic Autism Mom has hired a trainer to literally kick her ass into shape. She will meet with said trainer 2 times per week for a minimum of 10 sessions with the option to increase her sessions to 20. She will not stress over the cost of this trainer and will not cry at the assessment appointment since"you have to start somewhere".
**Assessment this Thursday, please pray for me.**

Goal #4
The Lunatic Autism Mom will schedule fun and relaxing things during school hours at a minimum of one per week.
by: 9/1/11
Resources to help meet this goal: The primary resource will be wonderfully supportive and caring hubby's paycheck. Occasional weeks might allow for a 1 hour relaxation massage and other weeks might allow for a guilt free hour of silence at the local library. In between, the Lunatic Autism Mom will try not to skip hair cuts and will not allow her gray roots to grow to obviousness (as they are now). The Lunatic Autism Mom will "put her money where her mouth is" and take care of everyone in her family including herself.
**Seriously, I am 35 and have a full head of gray hair. I've been dying it since I was 16, bad genes I guess. How does one acquire that casual, classic, youthful, silver gray bob that looks so good on the models in JJill and Lands End Catalog? I would totally consider letting it go if I knew I could look like that in the end!**

Goal #5 (the final goal)
The Lunatic Autism Mom would like to learn something new this year. Something new could be kayaking, a foreign language, standing board paddling, snowboarding/skiing or visiting local museums for general knowledge.
by: the end of the school year
Resources to help meet this goal: the entire Smithsonian, various lakes and the Chesapeake Bay, the local library, Liberty Mountain and the kindness and support of handsome hubby to chillax with the boys during the hours that learning this new skill cannot be accomplished during school hours.
** Yeah like I need another hobby, I'm a big time crafter but I want to learn something not crafty, more active and something that I could eventually share with my boys once I understand the mechanics myself. **

Assessment report due: 01/01/12

In the immortal words of a person who never existed (and didn't fully understand correct grammar):

DO OR DO NOT, THERE IS NO TRY.
-Yoda