The Mask of Strength

I put on good front.  I smile a lot, joke often, and let on that I rarely ever let anything get me down.  It’s all a lie.  I’m tired all of the time.  I’m cranky, moody, and depressed.  My kids are my world and I would do anything for them, but I’m drained of every ounce of my energy and my spirit is fading.  As the boys get bigger, so do their challenges.  They aren’t adjusting to the move very well and quite frankly I’m not adjusting to their new selves.  Because of Aidan’s growing sensory needs, I seclude myself and younger brother in the house most days.  It’s just too much trouble to make it outdoors.  Even trips to the backyard can be hell.  I don’t know what has happened to my little boy over the past year or so, but it appears as though he just simply cannot handle doing anything outside of the house (he isn’t much better indoors either, to be honest).

I used to be able to deal with his meltdowns in public and perhaps this was partly due to the fact that he was younger and smaller, therefore strangers tended to be a bit more understanding…but now that he is so much taller and bigger, I can feel their judging eyes on me, their comments on my poor parenting are beginning to pierce like daggers.  And I hate it.  I hate that Autism has a hold on my children and it’s swallowing them whole.  I want to help others on this Autism journey but I need help and guidance I suppose.  I am not as strong as people claim I am.  I am quick to anger now, frustration is pretty much the only emotion I feel constantly nowadays.  I’m lost.  I’m hurt.  I’m trying everything, doing everything, and having yielded little to no results…my will to never give up is beginning to break little by little, day by day.

I would attempt to put myself in my boys’ shoes and whenever one or both of them had a rough day I would try to not think of how bad it made me feel but how bad it must be for them…and that would usually work.  Changing perspectives made me change focus and I was better.  Not anymore, I want to know, “what about me?”  Aren’t my feelings supposed to matter?  Am I not allowed to feel the anger, hurt, frustration, anxiety, etc.?  Because now, I feel it all.  I’m overwhelmed by them…consumed by them.  I function well on the outside, I put on a mask of strength…I wear it most of the day and night, sometimes I don’t even take it off.

But I’m breaking inside.

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Pre-verbal?

There was a post I read earlier today that inquired about the difference between pre-verbal and non-verbal. I wasn’t going to respond to it because I could have written a book on my thoughts, but then I said eff it, that is what I am in those groups for and have this page/blog, to share my thoughts and feelings on all things Autism. For myself, I generally think of my son Aidan, as being pre-verbal. I don’t use the term all that much because many outside the Autism community (and a few inside) don’t understand what I mean by that and I spend a lot of extra time explaining myself and in the end, all they really want to know is can he actually speak words.

Pre-verbal is a term I am seeing a lot more of and not a lot of people understand what it means…and from my experience, it has taken on several different meanings. For some, I have found that they prefer pre-verbal to nonverbal because they hold out on the hope that their child(ren) may one day speak. And for others, like myself, I have come to grips with the idea that my son may never speak words, but I feel that just because one cannot verbalize their thoughts doesn’t mean that they aren’t trying to communicate. My son makes a variety of noises, and there are different sounds and pitches for different needs and varying moods. Essentially pre-verbal communication is the sending of an intentional, purposeful message to another partner. This can be achieved through an eye gaze, a vocalization of some kind, pointing or some other gesture, etc. rather than relying on a string of words to communicate. My son cannot yet speak words however he communicates through a variety of other methods (pecs, pointing, gestures, hand leading, shaking his head no, etc.), those are all examples of pre-verbal communication. So all in all, preverbal basically means (to me), that while one does not (yet) verbally communicate with words, they may be able to do so in other ways.

So, there you have it, lol. I will use the term “pre-verbal” more often when describing Aidan, and I’m okay if I spend the few extra minutes explaining why.

Whose children does these trangender bathroom laws protect? Certainly not mine with special needs.

We spent the most of our Saturday an hour from home at a high school watching my oldest son with Autism and others with special needs participate in a Special Olympics athletics event.  Both my boys are on opposite ends of the Autism spectrum, with my 9 year old on the severe (classic) end, and my 7 year old on the moderate to high end.  Normally, I don’t think twice about my children and having to accompany them to the restrooms, they have special needs and they need to be with an adult who knows how to care for them and their needs to the restroom.  However, yesterday, I got hit with two separate incidents in two separate locations that reminded me that taking my children to public restrooms was going to not only be challenging because of their needs, but because of strangers incapable of understanding and recognizing their needs.

While at the special olympics event my oldest son, who is not yet potty trained, had an accident.  A major one.  I took care of most of it at the car, but he still needed to be cleaned up more, and I also needed to use the restroom.  I take my bag, my boys, and we head out to find the bathrooms.  We find the restrooms and I head towards the ladies room with my boys.  I hear a woman’s voice behind me say, “the boys restrooms are over there.”  Another man says, “yeah, they’re around the corner.”  I look at her and say, “yes, I know….but they need to accompany me to the restroom as they have special needs and cannot be left alone.”  “Can’t you find a young man to take them to the boys restroom?”  I told her that “perhaps I could, but I’m not, because I, as their mom, knows my children.  I’m not going to hand them off to a stranger who doesn’t know them, just to use the restroom.”  She gave me a look like she wanted to continue on, but I didn’t give her the chance and I turned and went to the restroom.  You would think there would be a lot more understanding individuals at a special olympics event, but guess not.

The second time we had to face a similar incident was later on that same day.  We decided that we would go out to eat at Cracker Barrel with my aunt and her family.  My boys and I arrived at the restaurant earlier than they had and I decided that it was best to go to the restroom before we sit to eat.  My baby boy with severe autism, requires assistance in pretty much all areas of his life.  He’s nonverbal, not potty trained, requires constant redirection and prompting, and wanders/elopes.  There is no way I would feel comfortable sending him to a restroom alone, and I’m not going to.  My youngest is higher functioning than my oldest, yet he has several issues with being alone and cannot always communicate his needs effectively.  Some days he is okay with going by himself into the men’s restroom and others I have to go in their and grab him because he’s taken too long and I find out he cannot button up his pants and he’s wandering around the urinals with his pants down.  There are many instances in which I am out and about with my boys without their father so I often have to take them with me to the ladies room, and yesterday at Cracker Barrel was no different.

We enter the store area of the restaurant and we look around a little bit before we head towards to ladies room.  A woman takes it upon herself to inform me that the bathroom I was walking into is for ladies.  I tell her, “I know.”  She then slowly repeats herself, “this is the ladies room” and to which I respond, “I know, I can read.”  And then I attempt to mentally calm myself because I’m going to snap on this woman soon.  And there she goes again, reminding me that I was going into the ladies room.  I think I lost it, I told her that my children have special needs and I am taking them to the restroom and if she needed to grab the manager or whatever, do it, they’ll find me in the ladies bathroom.  I am within my rights to take my boys to the restroom with me, as they have special needs, and require that someone accompany them.  She told me that, she didn’t “know,” she couldn’t “tell.”  I lit into her then.  She spent the better part of 5 minutes prior (my youngest was tinkering around with the toys prior to us going to the restroom) staring at my son in his special olympics shirt, headphones, with his picture card book around his neck jumping up and down screeching all the while she wore the all too familiar “what’s wrong with him” face.  She knew and she wanted to be a dick.  And even if she didn’t know, she was still a dick.  She then claimed she just wanted to show her daughter from an early age that it wasn’t appropriate for the boys to be in the girls’ restroom and vice versa.  I told her to teach her that there are special needs people in the world that this won’t apply to.

I have reached my limit on this issue.  These laws that fueled these interactions have worn me down.  Spawned from some irrational fear of predatory behavior, those who support these sweeping laws don’t think of the consequences of enacting such policies.  Some of these laws have clear language providing exemptions for parents of special needs children and others aren’t so clear…could us parents with opposite sex special needs children fall victim to violating such laws?  Potentially.  What about those same-sex couples with opposite sex children?

Common sense should tell you that a male, regardless of age, dressed in male garb, going into a ladies restroom WITH their mother is not going to sexually assault your child.  Laws like the ones passed in North Carolina don’t feel anything like they’re protecting my children…if anything they’re putting me and my children in situations where we are being accosted and harassed by strangers emboldened by such laws who think they can just come up on others in an attempt to “check” them.  I already knew my sons getting older would be challenging taking them to public restrooms, but I hadn’t experienced this kind of harassment for doing so in….like, ever.  And since these laws and Target’s transgender friendly policy have dominated news cycles and social media, I feel like my little family is being targeted, and that isn’t right.  These laws aren’t right.

And speaking of Autism Speaks…

It’s two days before the start of Autism Awareness Month (April) and because I like to spread nothing but awareness and my efforts to promote acceptance, I am going to spend the next two days to release all my pent up frustrations and anger towards what I feel is nonsense and completely divisive rhetoric coming from those within the Autism community.  I want to start my April feeling good about what I am attempting to accomplish in regards to raising awareness, fundraising, and helping others…I cannot do so when my mind is plagued by these issues I keep bottled up.  I loathe conflict, not because I’m a people pleaser or not good at holding my own, but because I feel I’m too good at holding my own, and I end up feeling bad for putting people in places they never should have leapt (archaic term I know, but fitting) from to come for me.  And it’s also exhausting to maintain a seemingly never-ending argument.  Having said all of that, I am going to open myself up and risk the angry comments and messages that are sure to come, they always do.

I have issues with the sentiment that this community no longer NEEDS awareness, but acceptance.  It’s erroneous to think that we have attained an acceptable level of awareness and that we should discard our efforts to promote awareness and solely focus on acceptance.  I take no issue with acceptance, as some have often posited, but I definitely do not think that abandoning our awareness efforts is wise, considering I don’t feel we are yet done with making the public aware of Autism.  Sure they may have heard of Autism, but do they actually know what Autism IS?  In my experience, no.  Many still think that because my youngest can speak, that he doesn’t have Autism.  Does that sound like a public that is aware of what Autism IS?  No, it does not.

We shouldn’t dismiss awareness because there are too many in this community who aren’t even aware of an entire side of the spectrum.  The severe side of Autism.  The side you don’t often see in the media, movies, or television.  The side of the spectrum whose loved ones are most apt to identify with an Autism Speaks, “I am Autism,” message, sans the creepy, ominous voice (that was unnecessary in my opinion).  The “want a cure” side.

And speaking of Autism Speaks….

You want to spend hours reading post after post about Autism Speaks?  Join an Autism group online and just scroll.  You want to keep an Autism group distracted and arguing for hours?  Post something about Autism Speaks.  You want your own personal hate messages?  Tell them you support Autism Speaks.

People spend too much time trying to tell others who to support.  Your telling me and others that you too, have Autism, and that this is why others shouldn’t support them, because you don’t, is bull.  You don’t get extra credit.  Not from me.  And others shouldn’t either, but they do, and that’s on them.

Good for you for being able to self-advocate and voice your opinion about matters that you’re passionate about, I hope that my youngest will one day be just like you.  My oldest may never ever be just like you.  You are your own voice, I am his.  I will always be his, until I am no longer mentally able to do so, or until I pass.  If I could live forever to care for him, I would not want a cure, I would gladly care for him…forever.  But you know how life works…we die.

Neglecting to understand the fears and realities of the parent of a child with severe Autism is just as harmful as what you claim Autism Speaks is.  Your dismissive nature towards them and inability to understand their struggles is what prompts them to seclude themselves in separate groups, or worst yet, feel alone while surrounded by those who are supposed to “get it.”

Treating Autism as some condition that everyone who has it, has it mildly and its comorbidity that affects it’s severity is ridiculous. Ri.damn.di.cu.lous. What’s even more ridiculous is the insistence on likening Autism with that of being a racial minority. I have never understood the parallel, and I’m not even going to attempt to now. Should someone find it in their hearts to aid me in this, by all means, I’m listening…I’ll even retract my statement of it being foolish should I come to “see the light” lol.

Like it or not, agree with it or not, many are drawn to groups and organizations that also show the not so pretty side of Autism, because for many, that is what Autism is in their homes. Autism isn’t always pretty. Ain’t all quirks and obsessive behaviors. The problem isn’t with the fact that many find help and hope with these groups and organizations. The problem isn’t with showing Autism in what many claim to be a “negative” light. The problem is that so many don’t think that Autism has a negative side. It does. Instead of lambasting others for pointing them out. Help them through those tough times. Tell them they will get through it. Give them tips and pointers on how to help their loved one who is having a rough time. Show them that they are not alone. And most importantly, acknowledge the existence of their struggle.

All in all, support who YOU want to support.  I do, and I support pretty much every darn thing.  You can ask for opinions if necessary, but ultimately do your own research, and come to your own conclusions.

 

My Boys Are Not Wholly Autism/Autistic

You would think I would get enough of this topic.  I talk about this very issue often on my personal Facebook page (add me), and I’ve touched on it on my blog page as well (GlazedHamm).  I talk about it with family and friends, complete strangers too, and yet I still feel the need to continue to talk about it.  It doesn’t often bother that others feel differently as I do, but it bothers me that they feel as though I don’t love my children as much as they love theirs.  Or that I haven’t accepted their Autism.  And therefore, yet another post about this topic…yet again.

Too many feel as though not loving their child’s Autism equates to not loving your child.  And I concede that this would be true…for those who view Autism as in integral part of their child’s being, some necessary component that completes them, and makes them who they are.  I am not one of those people.  My sons HAVE Autism.  My sons are NOT Autism.  Their whole self, being, and essence is greater than Autism.

I acknowledge shared characteristics and personality traits among those on the spectrum.  I enjoy many a memes aimed at bringing this community together through the celebration of our shared experiences (“you know you’re an Autism parent when…”).  I find strength and friendship in this bond I share with others walking a similar path, however I am unsure how I feel about the seemingly conflicting messages we convey.  We pound on about their sameness, while screaming about their uniqueness.  I am often guilty of the same, and I honestly am unsure if there is or isn’t anything inherently wrong with this.

I feel as though these share experiences, those similar characteristics and traits I have enjoyed sharing with others and bonding, this sameness, boxes in my children…encloses them within a wall of Autism, blanketed by a sheet of more Autism.  Yes, my child likes to murder my computer mouse with repetitive clicks looking for videos on YouTube, same as yours.  My child flaps, just as yours flaps.  My son has GI issues, just like yours.  But even in all that sea of sameness, my children are their own beings.  I feel that that often gets lost.  We forget that our children are individual little humans with their own thoughts and feelings.  They are unique in their own right.  They have their own personalities, temperaments, and quirks.  Their own likes and dislikes, and their own interests…apart from others, even others with Autism.

I found myself drifting from the original point of this post, I’ll attempt to tie all this in together.  It is my insistence for MYSELF to view my children as more than Autism that has garnered the ire of those planted firmly in the “Autism is who they/we are” camp.  I have actually been called names for holding such a position, cursed at, which I find insanely ludicrous, and honestly a bit hilarious.  Names outside of what I have been given at birth harm me little, I take issue with the insinuation that I cannot possibly love my child’s whole self if I denied a part of who they are.  I don’t deny any part of their having Autism.  In fact, I have embraced that fact.  I simply do not believe their Autism is a significant part of who they are that makes them who they are as a person.  Does Autism contribute to certain aspects of their whole self, both positively and negatively?  Yes, I do believe so.  Is Autism solely responsible for developing their whole self/being?  No, I do not believe so.  Autism affects each and every single individual that has it differently.  You know the saying, “if you’ve met one person with Autism, you’ve met one person with Autism.”  I personally feel that Autism affects every individual differently because each and every single person is different.  From the start.  Autism doesn’t make my children who they are, and I simply prefer that my children not be defined by their Autism.  They are so much more.

And in closing, we need to accept that others may have views that dissent from our own.  It’s okay to have a difference in opinion.  Not everyone is going to agree with everything I say, and I am okay with that.  It’s too bad many others aren’t.  Do better people.  Or don’t, and continue to send me your angry messages.

Random Lessons Learned

I feel like my mind never turns off.  I think about any and everything throughout the day and night.  Some of it good and insightful, much of it is garbage, I admit, lol.  But those few good thoughts I have throughout the day that have to do with Autism I often share (mostly in a journal) because they are often revelations that help me in the future.  They are my “Eureka” moments, my “lessons learned,” my “why didn’t I think of that (sooner)” thoughts I come back too.  I’m going to share some of those random gems that have helped me throughout my journey with Autism.  I’ll continue to add to them as more “pop” up :-).

 

***Another day, another ARD. Had another parent ask me how I didn’t find it depressing when they tell you your son’s IQ is below 70. I did. At one point in my life. I don’t anymore. I don’t view IQ as some definitive measure of one’s true intelligence, but that’s me. I see it as a means to determine how quickly one attains and retains knowledge, not an indicator of dumb or smart. For example, it may take your son no time at all to figure out 2+2, then they move on to 4+4….by the time my son grasps 2+2 your kiddo may be onto their times tables. But my kid still learned 2+2, he is up to 4+4 now. He may learn slower, but he can still learn.

We are all lifelong learners. Some learn faster than others, some slower, but we still learn.

That is just how I feel though, there are tons of folks with higher (and lower) IQs that may disagree, lol.***

 

***Nonverbal doesn’t mean unable to understand or unintelligent…it simply means they cannot speak. There are several other ways to communicate other than spoken words. I’m focusing on those other ways. I got to hear his voice a few times, hubs got to hear the “uh ohs” and “byes” when he was younger. I’m now okay with never hearing it again.

He needs to be able to communicate, but it doesn’t need to be spoken language. I have let that dream of mine go, and now that I have, I feel a lot better. A shift from teaching in a manner geared towards what I dreamed for him to teaching in a manner consistent with what he’s able to do and comprehend. I feel no more pressure. I know he will thrive more this way.***

 

***Your child is still your child. You’ll always be the leading authority on your child. Their personality, strengths and difficulties, and likes and dislikes. Your child has a long road ahead of them, and every day is an opportunity for you to positively impact their prognosis.***

The Student Introduction Portfolio

If you’re anything like me, you spend an innumerable amount of time at your child’s school, interacting with his teachers, and attending IEP meetings.  You spend so much time with the school and your child with the teachers and staff that you almost feel as though they know your child almost as much as you do.  Of course, this is simply not true…but if there were a way to help them to know your child a little better and foster a better learning environment for your kiddo, you’d do it right?  Darn right you would!  I didn’t know what I could do or say that I hadn’t already done or said already…that is, until I went to an Autism meeting and was introduced to the Student Introduction Portfolio.

What is a Student Introduction Portfolio?

It is a way to provide information about your child beyond what is in the IEP.  In most IEPs, the focus is on the challenges and goals for your child, very little focus is on the strengths and positives in your student.  The portfolio provides all the “positive and good stuff.”  Their likes, dislikes, talents, hobbies, abilities, history, health concerns, pictures and more.  My son’s look like little books, contained in binders.  I hand this portfolio to his teachers, aides, principal, nurse, gym teacher, bus driver, cafeteria monitors, and so on.  Whoever comes into contact with my son on a regular basis, received a copy of his student portfolio.  While I use hard copies of my kid’s portfolios, I have seen some that were created via Powerpoint and presented as a slide show on disk or usb.  I see myself going towards this method of distribution in the future, but for now, my binders are good enough.

What information is in the Student Introduction Portfolio?

Some possible portfolio contents include:

  1. Checklist of who should read the portfolio
  2. Table of contents (you should number the pages if there are more than 8 pages)
  3. Student Specific Information:
    1. What makes him or her unique?
    2. Their loves, interests, and hobbies
    3. A week/day in the life of…
    4. Family background and information
    5. Educational history
    6. Relevant photographs and captions
    7. Letters or statements from friends, family and peers
    8. Work samples
    9. Artwork
    10. List of favorite games, books, movies
  4. Pertinent Educational Records:
    1. Modifications
    2. Evaluations
    3. IEP goals and objectives
    4. Reports or summaries from therapists
    5. Comments from previous teachers
  5. Pertinent Health/Medical Records
  6. Articles pertaining to specific medical, health, or educational issues
  7. Helpful hints on using equipment (communication, positioning, mobility)
  8. Recommended reading list

How will your child be involved?

Dependent upon your child’s functional level, involve them in the making of this portfolio as best to their ability to assist.  My youngest is higher functioning, and there will come a day when I want him to self-advocate, this portfolio is his introduction into doing just that.  He has helped me tremendously on his portfolio, from choosing the artwork for the cover, to giving me his lists of likes, dislikes, and hobbies.

What do you want others to know about your child?  What do you hope to communicate?

What do you want the readers of this portfolio to walk away with after having read this student profile?  I wanted them to see my son as a child first, not his disability.  I wanted them to see him doing things that kids do, running, jumping, playing chase with his brother, playing with blocks, etc.  Too often the educators would get so wrapped up in meeting IEP goals that they would often forget that my child was…a child.  I included pictures of him playing, laughing, being tickled, watching television, etc.  This showed that my child enjoyed many of the things other children without disabilities enjoyed.  This made him more than a disability, this made him a person.

Determine your audience.

Earlier I mentioned that if you came into contact with my son on a regular basis you received a student profile.  Being that most of the individuals that received the portfolio were in the school setting, I am going to attempt to collect photographs of my son doing school related activities as well.

What is the best way to organize the portfolio?

Make a list of the most important information you want to include.  Determine if any of this information can be grouped together or if it best left apart.  Consider tabs and dividers.  My children’s portfolios have been in three ring binders, binding combs, and notebooks.  Remember, there is also the option of creating a presentation on the computer.

How will you present the portfolio with others?

This is where you determine how you want to disseminate the portfolio with your intended audience.  There is always the IEP meeting.  If you have one coming up, or if you would like to schedule one, this would be a chance to provide the portfolio.  Scheduling a conference or meeting with the key participants in the IEP, but without the formality of an IEP meeting is also a good idea.  Remember these individuals are busy, so attempt to keep your presentation of the portfolio relevant and concise.  I usually highlight over the main points of the portfolio and provide them with copies that they can take with them and go over later.

Again dependent upon your child’s functional ability, you should aim to include them in the meeting as well.  I allow my youngest to participate in his because he can observe and provide input should he so choose to do so, and I also see this as an opportunity for him to get his first glimpses at self-advocacy.  My oldest is on the severe end of the spectrum and I do my best to have him at the meetings, but most often he would much rather be elsewhere and doesn’t provide any input whatsoever.  He would much rather remain in class with his peers.

Evaluate your portfolio.

Go over your work.  Make sure it is what you want, gets your message across, and provides all the information you wanted it to provide.  Ensure it is organized neatly, the font is clear and easy to read, photos are relevant to the purpose of the portfolio, and that information is not shared more than once.  One of the more important pieces of information is that your portfolio should stand on its own, that it be self-explanatory.

That’s it.  That sounds like quite a bit of work, and in some ways, it is, but it gets much easier over time.  A lot of what is provided can carry over into the next year’s profile, such as some of the medical information.  I am currently working on my kiddo’s profiles as my previous ones from previous years was lost and I have to start all over again (bummer, I know).  This time around I’m saving a copy everywhere, usb, cd-r, desktop, documents folder, and emailing it to myself.  I hope that I have helped at least one person out with this information.  In my experience, the staff loves the portfolio.  It provides them with invaluable information about their student they wouldn’t get from an IEP, it’s a reference they can refer to whenever they need to, and it helps foster a more positive relationship between parent and teacher.

Hope you enjoyed this little nugget of goodness…if so, please share it with others.

*If you would like the original source of this material, I believe it can be found by visiting www.partnerstx.org, the booklet that this information was derived from is entitled The IEP & Beyond: Back to School Special Edition and was written by Brenda Nelson, PRN Leadership Specialist…her article was titled, “Thinking Beyond the IEP: A Student Introduction Portfolio”  I am unsure if you can find this booklet online, but with the information provided, it’s worth a looksee.

If you would like to contact them to see if you can request a copy of this booklet, you can do so via telephone 409-898-4684; or email partnersresource@sbcglobal.net

The guidelines for developing a student portfolio were developed by Texas Project First; and the evaluation tool was developed by Family to Family of Houston.

MY Advice to Parents of Children with Special Needs

I have two kids on the Autism spectrum. Does that make me some sort of an expert on the subject?

Yeah, I believe it does. I am an expert on Autism. I don’t have the fancy titles gained from years of

schooling and thousands of student loan debt. The knowledge I have acquired over the years is the

result of having two kids on the spectrum. I’ve purchased the books, took the courses, attended the

seminars and meetings, etc., all valuable tools in my kit, but none more valuable than my two beautiful

boys. No matter the disability, whether it’s Autism, Down Syndrome, or Cerebral Palsy, there’s no

greater expert than that of a parent. I get the bulk of my most precious information about my boys and

Autism from other parents of children with Autism and other special needs. I have learned so much

from them and I like to think that they learned a thing or two from me. I was asked recently at a

meeting what was the best advice that I could give other parents of children with special needs and

honestly, I couldn’t narrow it down. But these are the ones that I pretty much tell to almost every

parent of a child with special needs.

Reach out to other parents. This is a definite must. You need that connection, and you need that

support. Seriously, join a support group if you haven’t already done so. If you’re in an area where they

don’t have any local ones, join one online. You have a special bond with each other and believe me,

when it gets tough, this bond will help pull you through. The support group serves many purposes,

support (of course), but also for adult interaction, one of my groups meets together at restaurants and

bowling alleys, just to hang out without the kids and have some fun. Support groups are like resource

soup, everyone gets together and just puts all of what they know into the pot to serve with the rest of

the group. Anything from where is the best dentist for those with special needs to a special needs

sports league.

Make time for yourself. You are the caregiver to a child who will more than likely depend on you long

after they finish school. You will burn yourself out if you do not get some time to yourself. Look into

respite services for your kiddo(s), or ask the grandparents to takeover for a night or two while you go

shake your tail feather out on the town. Go see a movie, get your nails or hair done. Do something, but

do something for you (or your spouse together) in your free time away from the kiddos. They will be

alright, and you will come back to them more rejuvenated and refreshed, ready to take on the world.

Make sure you know the laws, both federally and in your state in regards to your child’s education

and services provided by your state. You will not be a very effective advocate if you are not well versed

in the laws. There are a lot of resources out there that can help you get acquainted with issues such as

the 504 and the IDEA, what should and should not happen at an IEP meeting, etc. Wright’s Law has

some great information online, most of which is free to get you started.

Play more. We as special needs parents get so caught up in our busy schedules of therapy,

appointments, school, and more therapies that we can sometimes forget that our kids are just that, kids.

They need to play. They love to play. So make some room in your (and their) schedule for play. Run

around the yard, throw the ball, blow bubbles, build a fort in the living room, go to the park, anything.

Just have fun, and they will too.

If you are the parent of a child with special needs, perhaps one of the most valuable pieces of advice

that I could give to you is to tell your story. Help guide another parent. Let them know that they are not

alone. I recently heard that if you were to combine the entire population of those in the US that were

disabled, the result would be that the disabled community makes largest minority. We are in this

together, so let’s help each other out.

Stims

Stims are self-stimulating, repetitious behaviors, and are probably one of the more recognizable characteristics of Autism.  It’s not enough to say that they are willing to stim, but that there is also this definite need to stim.  In determining whether or not a behavior is a stim, I often ask myself, is the behavior repetitious?  Does my child make eye contact while doing the behavior?  Does my kiddo seem to be in his own world?

Stims aren’t limited to activities with objects (wall staring, for example).  Repeating movie lines, hopping from one side of the room to the other, playing the same song over and over, asking the same questions over and over, spinning, and the list goes on and on.  For the verbal kiddos, your child can still speak to you and still engage in stimming, so don’t just assume that because your child is talking to you that s/he is interacting with you.

My kids are in their own world when they stim, and they are quite comfortable being there.  I am always asked what is a stim and how will I know it when I see it?  A stim is done exclusively, without any interaction from another.  Check out your kiddo’s eye contact.  Can you see how they are almost always not looking at any one person, but rather the activity s/he is engaged in?  They continue on as if no one is in the room, as if no one is around.  Observe those that are Neurotypical.  Look at how they engage with others both verbally and nonverbally.  They give off tons of interactive cues.  There are no interactive cues given off when my children stim.  I have watched my children often and I take extra care to note times in which they are not responsive when they are engaged in an activity, even if that activity seems socially appropriate, such as reading a book, or watching tv, or surfing the web.  I then ask myself, “if I were to interrupt my child while he was doing whatever it was he was doing, would he then pay attention to me?”

We all can zone out on an activity, such as watching tv or reading a book, or some other exclusive activity, the difference between those without Autism (neurotypical) and some with Autism is that those with ASD do not often stop a stim to give attention to another person or activity.  Neurotypical individuals can.  I’m fairly sure that if my youngest who stims quite often while on the internet will still sit there, even if the entire area around him were engulfed in flames.  He is that involved in whatever it is that he is doing.  For him, it may be a matter of him frequently choosing not to leave his own little world, for whatever reason, whereas my oldest, I feel that he might have a harder time actually doing so.

Helping Your Child with ASD

I received this list while attending one of my Autism group meetings a few years back and I have been following it ever since.  I’m sharing because I think that it can help another parent, just as it has helped me.

Helping Your Child

Talk to your child, whether s/he appears to be listening, or not.  People with ASD tend to have a great capacity to absorb information, yet may unable to consistently signal their interest and attention.  Explain, clarify, narrate, read aloud, and assume the best.  Avoid talking about your child as if s/he wasn’t present.

Be clear and literal in your speech.  Avoid figures of speech and double meanings.  Give directions fully and completely:  Don’t assume anything “goes without saying.”  For some children, words seem to be more understandable when they are sung rather than spoken.

Provide an organized structured environment.  Children with ASD easily become anxious and need to know in detail what is expected of them, where things are, what is happening, and what will happen next.  Prepare your child for new situations: minimize surprises.

Use visual explanations, visual cues, and visual reminders wherever possible.  Many parents find that educational videos hold a child’s attention.

Help your child participate.  Children with ASD profit from all the friends and everyday activities they can get.  Since they do not automatically pick up on social cues, you will need to coach and help them along.

(From Autism National Committee)