Wednesday, November 8, 2017

NTPM's Decision Series #1: Making a Decision About Education

This blog post is the first in a series of posts centered around decisions that special needs families need to make. In this post, Angela will be discussing decisions centered around education. Future posts will include decisions about medication, therapy choices, and natural/alternative treatments. 

When you are the parent to a kiddo with special needs, there are A LOT of choices that you will be faced with. Some you will be expecting, like medical choices or therapy choices. Others will come a surprise. For me, deciding what education platform would be best for my boys was a surprise choice. I just assumed (and you know what happens when you do that!) that public school would be the best option, but that turned out not to be the case for our family.

When my oldest son started kindergarten, everyone was very excited. We met the teacher, bought school supplies and new clothes, dealt with nerves, and all of the things most parents do at the beginning of the school year. Everything seemed to be going well. At our first parent-teacher conference in October, the teacher told us he was progressing well overall, but there were some concerns. His handwriting was not very good and he was acting out in class when he got bored. We talked to our son about it and we worked on some other things he could do when he got bored. Everything seemed to be going well again.

Then December came. Two major events happened that had us questioning public school. First, our son had his 6 year old checkup with the doctor. The doctor told us that he had quite a large spike in his weight gain. Enough of a spike that the doctor told us we needed to cut back on what he was getting for lunch. The concern that we had was that he was eating the same lunch he always had (we packed his lunch because he did not like the cafeteria food). After talking with the doctor, we figured out that the weight gain was most likely because he was being less active, not that he was eating too much. Sitting behind a desk for 8 hours a day was taking a toll on his little body.

Later in December we found out just how much of a toll school was having. Our son was being seen once a month by a physical therapist for a leg length discrepancy. The PT would measure his legs and adjust the lift in his shoe to make sure he wasn't having any discomfort. In December she had to do a complete evaluation for the insurance company. She came to us after the evaluation and told us that he had lost enough core muscle strength that he was unable to complete tasks that he had previously been able to do. He could no longer do sit-ups, he struggled to stand or hop on one leg because his core was not strong enough to help him balance. The PT recommended going from one visit a MONTH to one visit a WEEK. Just to help him regain skills he had lost.

The final straw for us happened in the spring. We were having a 504 meeting to prepare for 1st grade. At that point, we knew we would be moving within the next year or two so we wanted a plan that we could take anywhere. I wanted things included in the plan that his teacher was already doing, even though she was not required to do them (like giving him space to cool down when he got anxious). I had to fight, tooth and nail, to make sure his 504 plan included a statement that his recess could not be taken away as a punishment. I got it in there, but I was upset at how hard I had to push to make that happen.

That was when we started discussing other options. Private school was not an option because we could not afford it. I brought up home-school, fully expecting my husband to shoot the idea down right away. To my surprise, he did not. We talked about it at length: what it would mean for the boys, what we would have to do, how we would make sure needs were being met, etc. A large part of our decision had to do with therapy. Between the 2 boys we were already at about 9 therapy appointments a week. Doing those in after school hours was getting more and more difficult, because everyone needed after school appointments. But, if we could do therapy during the day, when schedules were more flexible, then we could fit everything in and do schoolwork in the afternoon and/or evening.

At the end of the kindergarten year, we officially filed with the state (every state is different; the state were in at the time required us to notify the school district that we were homeschooling). We both felt SO relieved! We knew that even though it was a very hard decision to make, it was the RIGHT decision to make. Later on, our son started revealing some of the other problems he was having at school that he had not told us about during the year. At 5-6 years old, he was already the target of bullying. That was part of why he would get in trouble in class; other kids would push his buttons and when he responded, he was often the one caught and punished. I cannot tell you how much better I felt knowing that he would not be subjected to that anymore. And I could tell that HE felt a lot better, too.

As we discovered on our journey to choosing the right path for our family, there are several things each family needs to consider when deciding what educational platform is right for your kiddo(s).

1. Are my child's therapy/medical/other needs being met in the current situation?
     I think the first important thing to address is whether or not your child is doing well where they are. If your child's needs are being met, there may not be a reason to change things. BUT, if you think there is more that could be done, if you have reservations about the professionals that are with your child on a daily basis, if you can see that your child is not doing as well as he or she could, it may be time to consider other options.

2. Are there things that could be put in place in my child's current educational situation to make it better for my child?
     Here you want to think about a 504 plan or an IEP. A 504 plan, like my son had, is a plan that lists modifications that can be done in the classroom setting to help a child be successful with the curriculum. An IEP, or individualized education plan, is a plan that makes modifications to the curriculum to help a child be successful. You would want to talk to either your pediatrician or other professional to decide which plan might be the best.

3. Does my child need a completely different educational environment?
     If you think your child might need something different, do some research about what is available in your area. Depending on what your child needs, age, functioning, diagnosis, etc., there may be schools or programs in your area that would be better for your child. You can also consider homeschooling and private school. If you are looking at homeschooling, you will need to become familiar with the home-school laws in your state. If you want to consider private schools, you will need to know about cost, including tuition and uniforms. Some private schools offer scholarships if tuition is a concern. But also make sure the school knows what your child needs; some private schools are not as accommodating to special needs.

4. What will my schedule allow?
     The home-school environment has been working very well for us, but my husband and I both have jobs with flexible schedules that allow us to take turns doing schoolwork. You can work and home-school; you just have to figure out if it works for you. The other thing to consider with schedule is how therapy, medical appointments, etc. will be influenced by your schooling choice. Private schools may have stricter attendance policies, while homeschooling doesn't have formal attendance. Though in some states, you will need to keep a log of hours or other materials, so again, do some research and be familiar with the requirements of your state.

This is our second year of homeschooling. It has been hard at times, easier at others. It is definitely a journey and we are all learning as we go. As a NTPM, I struggle with worrying about whether or not we are doing the right thing. But as long as the boys are making progress, I really try not to beat myself up about it. If you choose the homeschooling route, just know that Pinterest is a great tool...but if it makes you feel inadequate, DON'T LOOK! In the end, I know it's going to be OK.

Wednesday, November 1, 2017

Who are you WITHOUT the kids?

Sherri here!  Glad you could join me.

So, today I wanted to discuss a topic that many of us don't put any serious thought to on a regular basis.  Perhaps it has fleetingly crossed your mind, only to be overtaken by more pressing issues - like the snack that just got spilled, the massive piles of laundry that needs to be done, or the sibling bickering that has suddenly become a full blown meltdown.  However, it's *vitally* important to come back to it as it will actually help you be a better parent!

Who are you WITHOUT the kids?

There seems to be a running joke that when you become a parent, you lose your life.  To be perfectly honest, it can feel like that's not all that far from the truth!  Moms especially tend to feel this way.  Your perspective on all the things you used to do or be before having children is very different after a child comes.  However, I'd venture to say that it's not so much that you lose your just changes.  A LOT.  All at once.  It's easy to get lost in all the things you "should" do or be now, and completely forget what you did or who you were before.  THIS.IS.DANGEROUS.  You cannot expect to change what you do or who you are drastically and suddenly without yearning for how things were.


"But I should love being a stay-at-home mom...I shouldn't wish I could trade places with my husband when he leaves for work."

"But I should love being a working mom...I shouldn't be bawling everyday after dropping my kids off at daycare."

"But I should love being a mom...I shouldn't feel bad for dropping the kids off with a sitter so I can go out without them."

Etc, etc, etc.  I am quite certain you can think of a sentence similar to these that has run through your head before!  AND IT'S OKAY.  Really!  Just think about it...

Are you the same person you were before you had a child?


Do you have the same likes & dislikes as you did before you had a child?


Are there things that you enjoyed doing before you had kids that you still enjoy doing?


Regardless of everything that has changed around you, YOU are still the same person underneath it all.  If you try to ignore that or completely change that person, you will likely find yourself in a very unpleasant place.  Just like your kids need attention and does the person you still are OTHER than "Mom".

Plus, let's be honest, parenting is temporary.  Truly!  Although you will *always* be mom and you will *always* worry about and watch out for your kids...eventually they move on.  This is true even for special needs parents.  While it may not look the same as a neurotypical family, it still happens.  This is a slow progression - which can be good and bad!  Thankfully our kids don't all of a sudden *POOF* grow up and don't need us anymore.  Can you imagine how traumatic that would be?  Rather, it happens over many years, a little bit at a time.  The exact rate is different for each child, but the truth remains.  Because it's so slow, though, it can be easy to feel like it sneaks up on you.  One day your child doesn't want/need help on homework anymore...the next, they are moving out.

So...what happens then?  What happens to YOU?  You may have just spent the last 20-30 YEARS being Mom.  Now what????  I say, again...

Who are you WITHOUT the kids?

Of course, the answer to that question is different for every mama.  Here's the thing: if someone were to walk up to you today and ask you that question, COULD YOU ANSWER IT?  I figure that if you're still reading this article by now...the answer is probably no.

Here's how to figure it out:
Make a list of all things you do (or did) enjoy AND DO THEM.

Seriously!  That's it.  Easier said than done, you say?  Absolutely!

Look, you already HAVE the answer to this question.  I bet if you took a moment, you already know what things you like.  The real challenge is spending time doing them.  My point here is NOT to add one more thing to your already over-filled plate.  In order to spend some time with the things that define you and your personality without the kids, you are going to have to put something else down - even if it's just temporarily.  We can't do "IT ALL" and trying to just makes things worse!  Have you ever heard the oxygen mask analogy?  Let's revisit.  On every flight, what does the flight attendant tell you to do in case of an emergency?  Put on your own oxygen mask before helping others.  The logic is simple: you can't help anyone else if you yourself are passed out from lack of oxygen.  Figuring out who you are and what you like WITHOUT the kids will help you be a better mama when you are WITH the kids.  Plus, eventually when you are not all mama all day, you won't feel so lost.

So, if you like to paint or read or skydive or sew or bike ride or go out with friends or whatever...DO IT!  The Mom Guilt will likely plague you at first.  Just being honest.  Which also means that, at least at first, these things you enjoy...won't be so enjoyable.  Try again.  Or try something different.  Just don't quit trying!  Eventually, the guilt will fade, especially as you see the benefits to your family when you feel better.  There's also nothing saying that you have to find time away from your family to do these things!  Find ways to include the kids - then give them the option to join you again or not.  They need to see that there is more to life, and to you, than just mama.  They also need to see that not everyone enjoys the exact same things...and that it's okay!  The important part to remember is this... 

You are a valuable person, both with and without the kids.
You ARE Not The Perfect Mama.

Wednesday, October 25, 2017

Who is the (NOT) Perfect Mama YOU look up to?

As an NTPM, there are a lot of mamas that I look to for inspiration, motivation, and feelings of acceptance. Some of them are online, others are real, flesh-and-blood friends of mine. And some of them come to my rescue when I least expect it.

At work a couple of weeks ago, I got a phone call from my husband. He was very upset and told me that he was ready to throw in the towel on homeschooling. I managed to talk him down and told him that maybe we needed to revise our schedule (among other things, but that’s not important right now). As soon as I hung up the phone, I immediately went searching for a friend of mine.

This friend is one of the mamas I look up to. She has a beautiful little girl that she loves dearly. She is very successful in our line of work, including winning multiple awards. She is always well dressed, always happy to see everyone, energetic, bubbly, and genuine. She is just an all around amazing woman and mother. I went to find her because I needed to talk about what had just happened. I felt like a failure and I knew she would be able to commiserate with me.

What happened was a lot more than I bargained for (in a good way!). I ended up in an office with my mama friend and another friend that, while not having kids of her own, loves my boys dearly and I knew she would listen as well. The three of us are talking about what happened and I just lost it. There I was, crying, feeling like a failure as a mom, feeling like a failure at my job, just feeling lost and overwhelmed with everything life has thrown at me. My dear friend stands up and just bear hugged me. As hard as she could. It was like she was hugging love right into me.

As I pulled myself together, she proceeded to tell me that she sees ME as someone that SHE looks up to. I was completely floored. I never thought that anyone would look up to me because from my perspective, I was barely hanging on - and that is not what people aspire to. My first reaction was to brush her off and tell her that she shouldn’t look up to me because I am so far from having this mama thing figured out that I might as well be on the moon. But I stopped myself. Instead, I told her that I looked up to HER. I don’t know if she felt the same way I did when I heard her say it, but she came up with an amazing idea.

While I think she would agree that we are both not the perfect mamas, we saw in each other the “SuperMom” moments - moments we have a hard time recognizing through our flaws. To remind ourselves of that moment, she printed off a blank superhero cape coloring page. She colored one for me and listed all of the things that she thought I was super at. And I did the same for her. Once complete, we both taped them up in our offices.

This was an eye-opening experience for me. I realized that I had neglected to tell my friend how much of an inspiration she was to me. I just assumed she knew how great she is! And I also learned that despite what I saw as my own shortcomings, other mamas look to me as a source of inspiration, just like I do to them. That really boosted my confidence and helped me take a step back from everything that I thought I was doing wrong and focus on what I am doing right.
The biggest lesson to take away from this is that we should be telling each other how much other mamas mean to us! Especially not the perfect mamas. My friend’s belief in me helped renew my drive to do what is best for my kiddos which then helped my husband and I make changes that needed to be made. With all of this in mind, I want to issue a challenge. Who is the NTPM that you look up to? Once you have identified her (or even THEM), I challenge you to TELL HER THAT. Let her know how much she means to you! I guarantee you will make her day.

And’s going to be OK.
~ Angela


Friday, October 20, 2017

Debunking "SuperMom"

Today’s blog post is coming to you from BOTH Angela and her sister, Sherri.
It’s laid out in conversation-style, so come join in the chat!

Hey everyone!
I’d like to introduce my sister, Sherri.  She’s going to join in the
conversation with me today, as it’s an issue we both feel
pretty strongly about.  Welcome!

Thanks!  As she said, I’m Angela’s sister.
I have a blended family of 5, including a couple of kiddos with some special needs,
and I wanted to weigh in today after a conversation Angela and I had recently.

Yeah, so today’s post is about the myth of “SuperMom”.

Exactly.  So where do you think this comes from?
Where do we get this idea in our head of what motherhood
should look like - whether it’s realistic or not?

I think when we have kids we think we will be able to do it all.
“Sure, I can go to work but still spend enough time at home!”
“Of course I can breastfeed, pump at work, and the baby will
take a bottle sometimes and me the rest of the time!”
“I can absolutely have it all without any guilt and my baby
will act perfectly and be just wonderful!”
Sounds great, doesn’t it?

Sure does!  And I think it’s based on the hopes we all have
about what kind of momma we want to be.  I think it’s especially
worse with the first child - you have to no frame of reference
for what’s reasonable.  Everything SEEMS doable.

But we often find out that life is less than perfect.
Sure, I can go to work and spend time at home...but in doing so,
I feel guilty for not being home more AND at the same time
I feel like my work is suffering because I spend all day long
missing my kiddos. Of course I can breastfeed and pump at work…
until the baby goes on a nursing strike because it’s easier
to eat out of a bottle than it is to eat from me. And now I feel guilty
AGAIN because if I was home, this wouldn’t have happened.
But if I stay home, I feel like I’m giving up the career I worked so hard for.

It’s a constant mental game - and it doesn’t matter what side you
start on.  It’s that whole “grass is greener” thing.
But if you really start to think about it, the inconsistencies get more noticeable.
“The perfect mom can go to work, feel accomplished, and get ahead
without feeling guilty or missing out on time with her kids.”
“The perfect mom stays at home, never misses her career or her friends,
and is perfectly content and happy with her kids all day everyday.”
Not only can neither of those statements actually be true in and of themselves...
they DEFINITELY can’t both be true at the same time!

Yeah, it seems like everything will go perfectly and be just wonderful…
until it isn’t.  Maybe you’re a SAHM that wishes you were working or a
working mom who wishes you could stay home.  Perhaps it’s more than
that, and you start noticing that something isn’t right. Maybe your kiddo
isn’t eating well and can’t gain weight. Maybe your kiddo should be
walking or talking and hasn’t gotten there yet. Maybe your kiddo has
started biting him/herself or is headbutting the floor. Maybe you just
have “Mommy Radar” that says something is wrong.

And here comes Round 2 of the mental game!  “If I was staying
home, I would have noticed sooner or been able to focus more on helping
my child”  “If I was working, I’d be able to afford to take my child to see
that Dr that has all the answers.”  Honestly, though, when something
is up with your kiddo - it doesn’t matter.  All that matters is that YOU
are this child’s momma.  We just tend to see our failures instead
of our successes.  No matter when or how, you KNOW when it’s time to take action!
However, that Call to Action seems to trigger our sense of Mom Perfection again.

So you notice something is wrong and you do all you can
to find out what is going on, and all of a become
a special needs mom. Here is the chance to be SuperMom again, right?
“I will do research, find therapies or medications that might help!”
“I’ll research them all and be well-versed to discuss pros, cons,
and side-effects at the next appointment!”  “I will make all of the
appointments to get all of the necessary referrals for services my
kiddo’s needs!” “I will make a list of questions to ask the doctor!” “I can do this!”

However, between meltdowns, sleep deprivation, housework,
and gets in the way.  Where I think we get into trouble
is that these don’t seem like particularly difficult things to do!  And individually, they aren’t.
“Surely I can carve out 15 minutes to Google my child’s diagnosis…”
“I can throw in a load of laundry every hour or so, and fold it after the kids go to bed.”
But when we have a list of 30 of these so-called
small tasks...there’s no way to get them all done.
Then when they DON’T happen, we beat ourselves up over it.
OR, we do get a chance to do SOME of things we wanted to do…
and then wish we hadn’t.  It all just ends up adding to our list.

Exactly.  You Google until the research gets depressing and
you don’t want to read anymore. And that therapy you thought
would be perfect isn’t offered within driving distance of your home.
The medication has some pretty heavy possible side effects
that you have to consider. Appointments? Yeah, more like waiting lists galore.
You are looking at months before getting into doctors or other specialists.
And your list of questions?  Either it never got made...or you made it and left it on the counter.

Oh, and we mommas are the BEST at self-flagellation.  We lay in bed at night
replaying everything that went wrong and how we think we should have
handled it differently.  We worry about ANOTHER day going by without
the therapy or medication, about the time that has slipped away.
Agonizing over that trip to the grocery store where you ran into a long lost
friend from high school...while your kiddo was mid-meltdown on the floor and
you were sporting a ratty t-shirt decorated with caked-on oatmeal and snot.

YES!  And then, you start comparing yourself to other moms
you THINK are out there. You see one mom who is able to not only
complete all the recommended therapy with her kiddo but several
times a day, because she is able to stay home. And she makes a video
to show everyone else how to do it. You see another mom who has a
blog full of eating tips and healthy recipes that she used to help her kiddo
with eating issues gain weight. She promises you can do it too! You see
even more moms post Pinterest-worthy pictures about outings or crafts
or dance recitals or karate tournaments...and you suddenly feel inadequate.
“Why can’t I do all of that?”

Uh huh!  You ladies know what we’re talking about.  You start berating yourself
and putting together a mental image of the SuperMom who easily and happily
finds time to do each of these tasks that, after all, aren’t that big of a deal.  Am I right???
You can see her in your head...the mom that’s always put together and accessorized,
even if it’s just for a quick run to the store.  The mom whose house is always
spotless and prepared for a last-minute playdate.  The mom who handles
bumps in the schedule for the day with grace and ease…and whose kids
are never upset about it.  The mom who blasts FB every morning with posts like,
“What a gorgeous day!  Squeezed in a short 5 mile run, then
made the kids GFDF cinnamon rolls from scratch, packed lunches
(organic, vegan, and nut-free, of course), and now I’m ready to wake them up!”

Here’s what I think happens. We see all of these little bits of
“perfection” from many different moms and we mush them all together.
We mentally create a “SuperMom” that doesn’t exist. We think that if someone
can do all of that therapy, I can too. If someone else can get their kiddo
to eat well, I can too. If someone else can take their kiddo to the zoo
without a meltdown, I can too. And pretty soon we have set all these ridiculously
high expectations for ourselves that actually came from many, many
different moms who are sharing their brief moments of perfection.

Moment of perfection + Moment of perfection + Moment of perfection = “SuperMom”

Sherri: much this.  Look, I am *for sure* NOT against us moms sharing
our successes (however small they might be).  However, we all need
to take each of those moments with a grain of salt!  For all you know, the ONE
moment that momma posted about was LITERALLY the only positive thing
that happened to her that day.  But nobody shares the bad stuff!  Well, not ALL
of it, anyway.  Think - we get onto each other for that.  #TRUTHBOMB
We’ve gotta stop doing this to each other, ladies.  Celebrate the successes your
fellow moms are experiencing - even if their success was around something
you failed at today.  Share your frustrations and let your friends know
that you need help AND what you need.  Heck, don’t just say,
“Call me; we’ll go get coffee!”  Get coffee and GO.TO.HER!
Be SuperMom for someone else.
Help make sure that momma knows that IT’S ALL GOING TO BE OKAY.

Here’s the thing to remember, this SuperMom we created…ISN’T REAL.
#GASP  We made her up! And then we are holding ourselves to HER
standard of perfection, not the reality of our daily lives. We need to not
only stop creating SuperMom but we also need to stop striving for perfection.
Nobody is perfect all the time and we should be
embracing that. However, that doesn’t mean that you aren’t EXACTLY
what your kiddos need. They’ve been entrusted to YOU!  No one else...just you.
Once you accept that you are not the perfect mama, life is a little bit easier.  
Let’s rewrite that equation:

Moments of NON Perfection + Love + Grace + Laughter + Tears =
Not The Perfect Mama

Friday, February 24, 2017

Does My Son Have Autism Or Is He Autistic?

I ran into an unintentional conversation online the other day. It got me thinking a lot, particularly about the words we use on a regular basis. While I stayed out of this particular online conversation, as I sensed a troll lurking in the background, it was interesting to watch the comments. Here's how it began.

Someone posted an article or link of some kind with a comment about terminology and mental illness. The comment was something along the lines of referring to people as having a certain disorder, not being a certain disorder (e.g. she has bi-polar versus she is bi-polar). The argument being made was that people with medical illnesses are referred to as having a certain diagnosis, not being a certain diagnosis (e.g. he has cancer versus he is cancer).

I made a comment on the post about my youngest son having a diagnosis of autism and that I try very hard to tell people he HAS autism while trying not to say he is autistic. I personally do it this way because from my experience, it is easier for people to see the boy, the person he is, if I say he has autism instead of saying he's autistic. He is SO much more than his diagnosis and for me, I prefer saying it that way.

Someone made a comment to my post. Here is what was said:

"Please forgive my ignorance, but what's the difference? If he HAS autism, he IS autistic. They mean the same thing. Using the alternative phrase takes away nothing from him unless you let it. 

That's like claiming, "I predominantly use my left hand," is different from saying, "I am left handed."

I weep over the strength people give words for no reason whatsoever than to find things to complain about." 

OK, for those of you who know me in real life, it took A LOT for me not to answer right away. I took some time to think about what this person wrote (and cool down a bit, let's be honest here). As I was thinking, some other comments came in from others. Many of them were from people with autism and they all disagreed about how to phrase it. Some said they refer to themselves as having autism, others said they refer to themselves as being autistic.

If the autism community had told me there was a consensus about the terminology, I would have gone with what people prefer. But there was no agreement. So I went back to thinking about the original comment. I was having trouble figuring out how to verbalize my thoughts on this, so I did not say anything, as I did not want to get wrapped up in an argument with someone that does not know me or my son.

Anyway, here are my thoughts (and you are free to disagree with me). First of all, to address the broader issue that was brought up, words DO matter and words DO have power. I think a good majority of people know that. Yes, we can control our reactions to words. If you call me a bad name, it will probably hurt my feelings (not for very long, but it will for a second). Even if the word you use is not mean, the intent behind your words is hurtful and that will probably bother me longer. 

Words are our way of communicating, of conveying messages, of sharing memories and emotions, of building relationships. Words are also our way of hurting one another, of expressing negativity, of conveying the intent of our messages, of tearing people apart. Our words are very important. In this regard, I think I can agree to disagree with the person about giving strength to words (and for the record, I was NOT complaining as was suggested). Words can hurt and heal, and I think we all need to be cognizant of that.

Back to the autism versus autistic debate. Having autism, to me, sounds like it is something my son has but the phrase still allows him to be so much more. Being autistic makes it sound, to me, like it is referring to his behavior, that he is autistic all the time. And yes, technically he is autistic all the time because yes, he does have autism so it is with him all the time. But when he is playing Power Rangers with his older brother, or telling me how much he loves our pets (he LOVES animals), or he is singing me a song, I do not see his diagnosis, I see HIM. To me, referring to his diagnosis as having autism allows for HIM to be seen by others. Being autistic sounds to me like he is tied to it and his behavior is tied to it all the time, and I do not feel like that describes him best.

I can honestly say that I would probably have a different opinion on this if he did not function as highly as he does. I also think my opinion would be different if I had autism myself. But neither of those is true, so I can only make decisions based on my experiences. If my son gets older and he tells me he wants to be referred to as being autistic, I will certainly honor his request. It is his choice. When he's old enough, I'll even sit him down and explain to him that he can choose. I want him to understand that he does not have to do what I did, he can choose whatever term he feels reflects him best. And I will tell him that his choice is flexible, that he can change his mind. 

All the while I have to remember that regardless of the term we use, regardless of the term he chooses, it's all OK.