Taking the Scenic Route

Rant about parenting boards

Every time I try and post something expressing the challenges and frustrations of parenting a child with atypical verbal development can people not just say “yeah, I can see that”, or “I get frustrated too”.  I know other people share this experience and I understand that most people that share the experience are also dealing with a lot of other developmental issues that I am not.  Every single flippin’ time I post something just about every single response is “I know you don’t want to hear this, but I think he should be tested for…”  autism, or aspergers, or sensory integration disorder, or hearing, or any number other things where delayed speech is a symptom.  You are right, I don’t want to hear that…if you would have READ the post, you would see that I was just looking for support, for people to say they share the experience, just like anybody else who post things like “why does everything have to be a battle” or “I am so tired” or whatever.  They are just looking for validation that they are not alone in this journey, not a diagnosis for Oppositional Defiant Disorder or Chronic Fatigue Syndrome.  Some parts of the parenting journey are just plain HARD and it helps to know that you are not the only one who has gone through this, especially when you don’t know people IRL that can identify with you.  Just because somebody does not develop every ability at the textbook time does not automatically mean they have to have “intervention” and a label attached. 

I am very involved and in tune with my son.  I follow his cues and am right there when he initiates the desire to learn something, I help direct him when he is bored and doesn’t know what to do…I spend hours doing puzzles, reading, pushing around little cars, singing, dancing, drawing, teaching him how to help around the house, and answering the million and one questions asked every day.  (you don’t have to be verbal to ask questions, trust me!)  I have learned how to calm him, focus him, comfort him, energize him, and learn what he likes and read some of the more complicated ways he communicates.  (His dad does all this too, I am not alone in this, but I am just talking from a first person perspective right now).  I am probably more in tune with him because he does not verbalize..we have to know him very, very well to be able to function effectively during the day, so there are some good things about this.  Plus, he is developing verbally, he is just doing it at a much different pace and learning style than most kids.  Instead of just trying sounds out, he wants some alone time to work on the skills.  I wish he would do this in front of me…I love hearing the cute things kids say when they are trying to figure out the language, and I do get some of that when I am able to sneak up and listen to him when he doesn’t know we are listening, but that is just how he is.  I am careful to encourage him to try things, to make mistakes so I can show him that mistakes are fixable and not bad, to jump in and experience things.  I am the mom who took his hand and lead him into the middle of a mud puddle because he was afraid to try it.  He is just a cautious kid and I am trying to temper that and help him to jump right in and experience life at full force.  Once he tries something once, you would never guess that it might have taken weeks or months of encouragement to try it because he has the energy of about 3 or 4 kids inside him. lol.  We have also learned how much we can push because if it is a bit more than he can handle, we have sleep problems where he apparently wakes up from nightmares as his fears are relived.  He is very curious about how things work, he just needs a bit of a well-timed nudge sometimes to jump in and try it himself.  It is just very intense and sometimes my human side, and my own perfectionist issues make parenting him overwhelming.  Plus, when most of your interaction is non-verbal, and you have those days where he is in destructo mode where he is determined to do all the things that are loud, messy, and off-limits at full volume it can really frustrating because there is no indication of what triggered it and no real hope of him being able to tell you what the deal is and it can be really hard to figure out when you have to make yourself calm down to think and observe and figure out.

Also, why do people assume that I am unaware of, or in denial of, diagnoses and information so extremely relevant to my life?!?  It’s not like I am capable of ignoring such a blatant deviation from normal development.  I have a mind, a voracious appetite for information, and well developed critical thinking skills.  I don’t just read something in a magazine and take it at it’s face, I dig up the supporting studies and read them for myself and look at everything from the methodology of the study, who sponsored the study (and if they have a vested interest in the results) for possible bias, and if the author of the article accurately reported the result or if it was twisted in some way to prove their point.  (Oh, and if the article doesn’t have any supporting documentation, I tend to ignore it unless I can find something to substantiate the claims) 

I don’t feel like writing a dissertation each and every time I post about something relevant to his delayed verbal development on why I am not pursuing a million avenues of treatment.  I have had his hearing checked, just to make sure, even though there was no doubt in my mind that he could hear just fine, but I will not subject him to a lot of nonsense.  There is too great a risk that some well-intentioned, but biased person is going to slap a label on him simply because he doesn’t feel like cooperating with that person.  The problem is magnifies because of his size.  I have had people come up to me in stores and start talking to him, and after I tell them his isn’t very verbal yet, they launch into talking about how he reminds them of their child (or their friend’s, or sister’s, etc) and how I should send him to the special ed classes at school…when I tell them he is only 2 and I don’t think we qualify for special ed classes at the school (yes, I know there are therapy options available for his age, before anybody posts any of that advice) they look shocked and say they assumed he was 5 or 6 and non-verbal.  That is a natural bias that I run in to all the time.  When I drop him of at the YMCA nursery, I have started writing “I am only 2″ on his nametag so people will cut him some slack when he *acts* like he is 2.  If he gets some label put on him that I don’t agree with, I am not going to seek the recommended treatment, and will then possibly face problems with CPS for being medically neglectful.  I am really looking forward to having regular medical insurance for him because I can attest to the fact you are treated MUCH differently when you have Blue Cross or Aetna than when you have the low income State insurance.  With the state insurence you are treated like you are a lower life form not worthy of their time and energy and must be uneducated and stupid…there is no way on this earth I am taking my child in for tests I feel are compelely unneccessary on state insurance.  And WHY, on a Natural Family Living / Attachment Parenting board, where the main audience is supposedly people who are more into alternative medicines and education can I not seem to find anybody who doesn’t mention “intervention, testing, or medication” in response to these posts.  WHY!?!

I am to the point now that I don’t even feel like I can post some of the neat advances he makes because somebody inevidably asks how old he is or makes a comment that I should have him tested because where he is at “raises red flags”.  So, now I feel like I can’t share frustratinons OR joy any more.  I guess it doesn’t matter that I have never heard “I love you” and the times he does say Mama and Daddy, it seems more like a coincidence of two sounds being put together than a name, or any of those neat little kid sentances that people post ‘makes it all worth it’.  I get special, wonderful momments, but they are quiet, and subtle, and you have to be watching for them or you will miss them. 

At least I can post here and have the option to erase anybody who starts in with such ‘helpful’ advice if I want.