the A word...

Don't worry, this is not about cussing or swear words!

It’s been way too long since I have posted anything…life seems to always get in the way, and when I do get online, it’s just for short spurts of time during the day rather than long enough to write, edit, post, etc… on my blog. And then there’s the matter of my sweet little man crawling and climbing all over me while I try to write, if he is awake. J

I actually have several blog posts I’ve been working on to continue my series Soul-Stirrings from Stephen, but I’m posting this one because honestly, I just need to get it out. And even more so is, since I’m opening this can of worms, I feel much safer posting it and getting my feelings out here than anywhere else on the World Wide Web. Those who wish to read it, will, and those who don’t wish to read it probably won’t take the time to come over here and read it. I kind of like it that way!

As we’ve known for a long time, Stephen has special needs, most of those which involve feeding problems and sensory problems. As he’s gotten older, many things have gotten better. Other things, including some of the sensory integration/processing problems, and certain behaviors, have either gotten worse or taken on a new dynamic altogether.

We knew that as he grew and developed his doctors and therapists would be “keeping an eye out” for anything else that might put Stephen on the radar for other possible diagnoses and issues. I’ve only told a handful of people what those other things they are looking for are, mainly because I don’t want rumors to start (which seems to happen when I talk to certain people), and I don’t want people to think I’m exaggerating, making things up, or worse. It saddens me that some would rather see me in the worst light as Stephen’s Mom, rather than the best.
I am so thankful for Stephen’s therapists who are able to recognize different behaviors and signs for other problems; they are really Stephen’s biggest advocates besides me, and they work so hard to show me how to help him and be the best possible Mom I can be for him. When he was younger, they constantly encouraged me to stay positive and try not to look at everything he does as a possible sign of whatever else.
However, there have been a lot of things lately, within the last few months really, that have caused all of us to seriously discuss other possible problems that might be a part of who Stephen is. It is extremely difficult, at the age he is at now (i.e. “terrible” two’s), to tell whether a behavior is a temporary, normal behavior that can be corrected or outgrown, or whether it is a behavior that is something to worry about. I don’t want to go into detail about the particular behaviors and things I’m referring to, but many of them are not good and do not fall under the category of “normal.”

I guess now is the time to say what I’ve been avoiding, so that you understand what in the world I am talking about.

In the next several months, Stephen will be tested and evaluated for Autism (the A word), or what his therapists call “atypical autism” because he has excellent fine motor skills, social skills and eye contact. This means that if he does have it, he will be somewhere on the spectrum but will not be severe enough to qualify for typical autism. It will be a long process to determine whether or not he has it.
To say I am scared is a gross understatement. As many of you know, I have been having problems with insomnia. Though for a while I was pretty sure it was habitual, I’m now sure of the real reason why it has continued off and on.

But at the same time, I have A TON of peace. I know that to me, it doesn’t matter what’s wrong with him, I will love him for who he is always. I’ve been praying like I’ve never prayed and spending more time with God than I have since probably the beginning of my relationship with Christ in college. It keeps me from so easily succumbing to worry and fear.

For those of you who read this, all I can ask for you to do at this point is to PRAY. If you believe in the God of the Bible at all, please lift my little boy up to Him. I don’t know what to tell you to ask for, except for God’s will, whatever that might be, for my Stephen. What I do know is that he is a child of God, who is loved beyond measure, and that I can trust God to take of him! I am beyond grateful that God is God and that He has a plan for my precious little boy, no matter what outcome we have in the months to come.


Aprille said...

Loved this post...I know a little bit about this from reading Kathryn's blog. I hope you will get some helpful answers!! Love you!

Carly said...

When Sammy was two, I called them the "not-so-terrific twos." It sounded better to me, though with his behavior issues at the time, we could've easily call them terrible. Haha.

Seriously, though, I had (and still have to some extent) some fears concerning the A-word too, because of Sam's speech delay and his past behavior issues. We're mostly over the hump, and while there may be some issues, I don't think he'll be defined by them. I think that's what really matters, that you know that Stephen isn't defined by what may or may not be "wrong" with him. In my opinion, that makes you a great mom!

Kathryn said...

Hey Hun,
If he is diagnosed with the a-typical autism it will PDD-NOS which is Autism, but non specified because of the eye contact and other motor skills he can do. Adam was places between PDD and regular Autism because she was not sure where he fit in as he does give good eye contact, but he does have a lot of the symptoms of Autism such as lining things up, and other OCD tendencies. Where is he getting tested? I highly suggest a Psychologist who deals with children in this area. I know it's scary, but once you have some kind of idea what you are dealing with it's going to be easier to get him the help he needs and watch him improve. Please let me know if you have any questions, you know I am here!!

Kathryn @ www.singingthroughtherain.net

Sara said...


That is what I was told also, that a-typical autism, or PDD-NOS, is still autism but does not fit in the category with typical autism. Stephen doesn't have too many OTC tendencies, but there are plenty of other things that have concerned us. His regular Ped. will refer him to a Developmental Ped. in Dallas, and we will see a Ped. Psychologist as well but I'm not sure where yet. It will take time to get in to see both, so right now we are just waiting. I will definitely be asking you a lot of questions in the near future, I'm sure!!! Thanks for being there. :)


Sara said...

Thank you Aprille and Carly! Love you both :)