My man at the park, watching the other kids play.
What I hate in this world, in uncertainty. I can’t process or accept what is “not yet”. How can you? The finality and inability to change a situation is what makes acceptance not only possible but mandatory. How can I accept what, to me, is still unknown?
If you just started following me but didn’t have the time to read all the way back in my blog (who has time for other people’s drama, right? We all have lives!) I started this blog because my son is having some developmental delays, which may-or may not-be in the autism spectrum. It is becoming more and more frustrating to live in the “maybe’s”. I just want to know! I want someone to tell me definitively either way. If you think about it for just one moment, think of the feelings you would have if someone told you that your only child “may” have an issue that will affect their youth in a relatively dramatic fashion. Or they may just be a late bloomer.
Wait? What? Those are two very different things.
If he is a late bloomer he will just pick up language slowly but when he does (which would be by pre-K) he will fit in easily, make friends, play sports and no one would be the wiser that he wasn’t a big talker when he was young. If he has Semantic Pragmatic Disorder (also known as a Pragmatic language Impairment) there are obstacles involved that differ greatly from that of a late bloomer. They are just so different in their outcome that part of me just wants to know so that I can properly prepare. Pick the correct schools, therapies, classes, ect. Part of me is just tired of sitting around watching everything he does and viewing them as “signs” of something and not just spending my time enjoying his childhood as I should be.
If I was to be 100% honest, I truly don’t care either way. He will have a beautiful life no matter what some developmental specialist tells me. I will work tirelessly to make that happen. I don’t know why I am so obsessed with the answer, I just am. I can’t keep beating myself up for not being someone that ‘goes with the flow’ when it comes to my Jpeezy. I can manage to do it for any other reason on the planet with ease, but not my son. It is just not in me. But the answer doesn’t seem to be in my reach anytime soon and that is maddening in it’s own way.
The reason for this is at his age the test for autism is pretty cut and dry. It is too black and white to be conclusive for Jpeezy. His delay is not a simple case for anything.
This is the pre-questionaire sent out to me by the autism testing facility in my city:
Does not respond to his/her name? Sometimes he does, sometimes he doesn’t.
Cannot explain what he/she wants. Sometimes he can, sometimes he can’t and is easily frustrated.
Has language skills or speech that is delayed. Yes, but not to a degree that is a dead giveaway. He has the ability to communicate but it is behind his peers.
Doesn’t follow directions. If the noun is familiar then this it is better. “Go get shoes”, “Come on”, “Go to the truck”. These are easier than say, “Put the car on the table”.
At times, seems to be deaf. Not deaf, certainly inattentive, but not deaf.
Seems to hear sometimes, but not others. Inattentive, but not deaf.
Doesn’t point or wave bye-bye. does, but has to be prompted (“say bye, Jp”)
Used to say a few words or babble, but now he/she doesn’t. He babbles incessantly, talks frequently but does “lose” words (you hear them once or twice but then they are gone again). He is a regular chatty Cathy with what he knows, almost to the point of crazy with the repetition.
Throws intense or violent tantrums. Certainly, not violent but frequent. He is two and is forming very strong opinions but his level of communication doesn’t match it. It is frustrating to want something specific and not be able to verbalize that.
Has odd movement patterns. Not at all.
Is hyperactive, uncooperative, or oppositional. Yes, yes, and yes. But isn’t that all toddlers?
Doesn’t know how to play with toys. This one used to be true (lined up cars and crayons, was uninterested in anything but cars) but now not at all.
Doesn’t smile when smiled at. Nope, he is a very funny kid. Full of laughter and brightness.
Has poor eye contact. Apparently, it’s inconsistent with strangers but with familiar people it is fine, if not perfect. It came off our list from the speech pathologist this month.
Gets “stuck” on things over and over and can’t move on to other things. Nope, he almost flits from activity to activity at times. Although when he is interested he will do the same thing over and over but not to a noticeably “odd” degree.
Seems to prefer to play alone. He has always been very independent and is equally happy playing with me or by himself. He brings me toys to play with him though gets easily frustrated when I don’t understand “the game”.
Gets things for him/herself only. Not at all, he asks for things incessantly. (*Side Note* literally as I am typing this question he just walked into the room with bread from the pantry for me to give him. :))
Is very independent for his/her age. Yes, as I mentioned, he is independent. But part of me thinks he is growing out of it because he seems to want to engage with me more and more.
Does things “early” compared to other children. Physically, yes. But language has been a big struggle.
Seems to be in his/her “own world.” Not really. At times, it is hard to get his attention but never to the point where it is a big deal.
Seems to tune people out. At times, yes.
Is not interested in other children. Interested but the play is still very parallel and not engaged.
Walks on his/her toes. Yes, but I did when I was younger, too. My grandmother is Native American and she literally called me, ‘Steps Lightly’.
Shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants). Not really, he goes with the flow pretty well, though in eating it gets a little weird.
Spends a lot of time lining things up or putting things in a certain order. When he was younger he used to line objects but now never. In fact, he spends most of his time wrecking things.
This is why I am reluctant to say that he is autistic. By that list, he doesn’t seem so, and it was suggested we wait until age three to reevaluate. Then the testing is more specialized to language and if the issues that we face now are still there, much more likely to be something other than a late bloomer.
This is a list of the symptoms of the specific language disorder, Semantic Pragmatic Disorder, that the pathologist thinks it could be.
Early Signs of Ages 0-4
• Quiet baby, content most of the time. Or a very difficult baby. Jp was a handful since birth.
• Likes playing alone repetitively. More when he was younger, less now.
• Difficult toddler with no sense of danger. Yep. But that is most toddlers.
• Does not respond to name, at times appears deaf. I would have to say yes to this one.
• Late talker, does not babble. Babbles and is a late talker.
• Speaks out of context, memorizing phrases of favorite tv shows. Memorizes phrases as a whole and doesn’t use the verbs universally.
• Inconsistent eye contact. Nope.
• Late pointer, unable to express wants. He was certainly late in this area. Still has some difficultly expressing wants.
• Fussy eater, refuse to eat certain textures. Big yes.
• A loner, prefers to play alone then with peers of the same age. Most of the time, yes.
• Late in recognizing self in pictures or mirror. Yes, he still doesn’t most of the time.
• Unable to initiate play with other children but will interact with in rough tumble play. Lots of chasing, very little communication with them or sharing or taking turns.
• Difficulty sharing, tantrums persist. Sharing with other children is a problem but with us, he’s great.
• Good with jigsaw puzzles, numbers, letters, shapes & colors. Um, he is a jigsaw puzzle master. Even I am impressed. Loves numbers and shapes to an obsessive degree.
• Prefers helping in real activities like washing up, or operating a computer. He loves all of those things. He would never give me my iPhone back if I let him.
• Repeats like a parrot. This one is true. He can repeat everything but can’t seem to do it as easily on his own. It’s hard to explain but I feel as though a lot of the things that he says he learns to gain a response but he doesn’t truly understand what the words mean.
• Obsessional interests. He likes to watch the same movies over and over, play with the same toys, read the same (one) book. But I think that is pretty typical.
• Very independent, does not ask for help. Asks for help all day long, almost to a level of insanity in the repetition department.
• Inappropriate response to sensory stimuli like touch, pain, sound. Not really, though he cries like a lunatic when his hands get too dirty. And he covers his ears A LOT. Not always when something is loud, either. Certain pitches-however quiet-seem to bother him.
• Difficulty in following rules. He is getting to an age where house rules are better but rules for a game or toy are totally lost on him.
So you see where I am stuck in limbo with this whole issue. The top test for me is a no brainer that he is NOT while the second set of symptoms coincides quite a bit. So I live in autism purgatory. I don’t want to accept that he is in case he isn’t and I don’t want to ignore that he may be so that I am understanding of all his ‘quirks’ (too many to name and this post is long enough already!).
No one said parenting would be easy, huh?
*For those of you that actually made it through this post-I wouldn’t blame anyone that couldn’t it is quite involved-I would love to hear some feedback from all sides. People with children with autism, parents of kids without. Since he is my only son and I have only worked with children with emotional and mental disabilities, I am afraid I just don’t know what “normal” development looks like at home! I would love any advice that anyone has to offer!
I'm just living minute to minute, hour to hour, day to day.