Be the smartest kid or the delayed wonder? A frank parenting conversation…

ImageWhen someone first dropped the word “autism” on me a year ago, I have to admit, I wanted to punch her. Like, literally. I could see me reaching out and snatching that cute bob right off of her head. I had taken Jp to see her to get a jump on the expressive language that was not coming as organically as I (a serious overanalyzing mother) had hoped and here she was rocking my poor little world!

I worked with children with autism. I knew what it looked like; how it manifested in two-year-old’s. My child was NOT autistic. I did not know what college she went to but I started to think it was some online shebang. I determined that that woman was crazy and trying to get more money from my insurance company. I secretly hated her.

Now, my husband didn’t take such an emotional response. He had a “wait and see” thing going on. I was jealous. I could not simply sit around and twiddle my thumbs…I had to KNOW what was going on and so I embarked on obsessive research that raged on for months. I started to sit back and view Jp in a more clinical (less mom- more scientist) fashion and began to see what she was worried about. I did research into the various parts of the “spectrum” and it opened my eyes enough to realize that Jp was likely going to fall into the category of PDD-NOS .

And slowly, oh-so-slowly, I became okay with that.

I began to stop looking at his tantrums and anxieties as something that he was doing “to” me or “because” of me. I emotionally relaxed, I worked on switching up my parenting practices, and I truly became a better mother all because my patience level expanded exponentially with my knowledge level and I learned to roll with things the way one only can if you do not feel forced to change it.

My husband was still very “wait and see”. To the point that he would not have a frank conversation with me about our child’s delays at all (the main reason that I started this blog was that I process by communication and Christopher was not ready yet to do so). We took two wildly different roles (as always with our left/right brain tendencies): I obsessed and researched and he played and waited.

It took the better part of a year for everyone to come back together but now we are officially there. Though, even speaking openly, we still have our differences of opinions…but just sitting down to discuss these types of things makes me so ecstatic. I feel like we are on the same team, finally, and that is the team that is going to kick butt and get Jp every and anything available to succeed.

However, even people on the same team do not always want to run the same plays…

Firstly, let me explain that the original thought of PDD-NOS as a diagnosis is no longer. They have decided, in all of their infinite wisdom, that the “spectrum” of disorders would be streamlined to one classification of Autism (with varying levels of severity I, II, III) and the criteria for that is much more rigid. Jp will not (or, I should say, I am pretty sure) fall there. I just do not see my “gray area” child as meeting those characteristics. At all. There are some other communication disorders that he may classify as but the levels of deviations from the mean are high (two standard deviations and that is extremely delayed and I am not certain he is that far behind) and it has been a good while since he has been evaluated for the receptive and expressive delays so I have no idea where he will stand there. Absolutely no clue whatsoever. So, after we finally became okay with PDD-NOS, we learned that we are back up in the air again.

My husband sees this and know that means that Jp will be mainstreamed (I agree) and may never actually have a diagnosis (no matter what we do) so he believes that it is in his best interest to be solely around neurotypical kids so that he always strives to be better. I worry that being the kid with delays -that does not quite know how to communicate socially- and spending all of his time with kids that are father ahead than him will hurt my already anxious and sensitive child’s fragile self esteem. Image

I want him to do activities that include kids with no difficulties so that he learns how to behave socially (he struggles here), of course, but I also see him in these environments as the child off to the side. The one standing behind them and watching as opposed to actually playing. Three-year-old’s speak to each other in their play. Jp does not know how to engage quite yet. So, while I love that he is learning from it, I am not sure how much actual fun he is having just standing around watching.

I also want to take him to activities for children with autism (this is where we disagree) as he may not be learning anything from them, per se, as his cognition level is higher but they play in a very non-verbal way and give chase and run and Jp laughs his little heart out and has an absolute ball. He is included and not just standing there waiting for someone to notice him or annoying other children for getting too close to their face or calling them “baby” (which I keep working on but he always seems to do it and there is nothing a three-year-old hates more than being called a baby).

I want Jp to be the best Jp he can be (truly) and I work on social boundaries endlessly but I also want him to be a kid and have fun. I want him to not always be the one that is different.

So, weigh in, please! What do you think is the best thing to do? Even though a group of Psychiatrists changed the DSM doesn’t mean that my son is not the same kid that he was and I can see both sides with crystal clarity. What would you do in our shoes?

Image

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www.techview.me

Childhood Development

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Amber Perea View All →

I'm just living minute to minute, hour to hour, day to day.

38 Comments Leave a comment

  1. Dads aren’t as intuitive as moms are, and we especially don’t know our kids as well as a stay at home mom can. Dads are also sensitive to any perceived or real knock against our boys, especially where the issue isn’t something that we can see right in front of our faces. I fight wife about treating Cool for his allergies for example. I don’t believe that he needs to be taking medicine every day and that he’ll eventually just outgrow whatever it is that she thinks is bothering him, doctors be damned. At the end of the day though, she’s right about that and some other minor conditions that he has that I’d never have noticed on my own. That was probably off topic, but oh well. I’d let him play with kids of all different types, especially if he has so much fun with the autistic kids. He may one day be the one who bridges the autistic kids and the “normal” kids in school one day. Who fucking knows?

  2. I honestly don’t know what I would do… but I would like to think I would try and find a happy medium. Play dates with children with communication disorders and some with those who do not have them. Maybe sit back and watch to see where my child fit best, and enjoyed their time the most. That’s a very hard question, got me thinking, that’s for sure!

    • It’s hard to find just communication disorders without other (more serious) cognition issues. He’s just an island unto himself, I guess. πŸ™‚

      I see where he fits…he just won’t live there forever and I want him to progress, too. I try and do both so he is well rounded. Ill just keep at it and hope for the best. πŸ™‚

  3. My husband is the same. He will sit down and work through the EI exercises with me, but he refuses to acknowledge that our son actually has delays that need to be addressed. He doesn’t think therapy will hurt, but I don’t think he truly believes there are underlying issues to be addressed. Flip side he left the NICU and it’s journey behind much cleaner than I did and tends toward a more positive outlook versus my “worry it to death” with circular thinking approach.

    I think your see where he fits best approach sounds awesome, but we haven’t really ventured into play dates yet. We’re fresh off of rsv isolation stage, and it’s hard to kick the stay away from other kids habit.

    • We actually never kept him away from other kids, honestly. He was always SUPER healthy and mostly still is. Weird for a preemie, huh?

      But that’s my Jp. Never fits into anyone’s bubble. πŸ™‚

  4. I don’t think there is just one right way. He has a whole lifetime ahead and who knows how much he will eventually go on to achieve. The biggest thing I have learned about being a parent is that if your children have a good sense of themselves they can withstand life well. So as long as what he is doing is filling him with the belief that he is comfortable and eventually confident he will be okay in hopefully many situations.
    A good friend of mine has three children. Her eldest, her only son, is autistic. He functioned very well and was sent after much fighting from his mum to mainstream school. After four years and a lot more fighting she managed to remove him out of mainstream. The child blossomed. So even though he was among high functioning children it was not having a knock on effect on his development. However he did so much better in his new school, and is a joy to be around. He is seventeen now.
    Are there online group discussions about this anywhere as so many others must be able to help better than those of us who have no experience?

    • I have a TON of mom followers that have autism/preemie/special needs/communication issues so I thought it would be a good place. πŸ™‚

      I want him to be confident AND learn. I wish there was more middle ground like he is. Not just black or white.

  5. Why can’t you do both? Or, assign hubby the task of making sure he is with neurotypical kids when he is around and you have the task of making sure he also interacts with kids on the autism spectrum. Or, are you talking about school specifically or playdates…..
    I loved Don’s comment BTW. I think he is right on. I think that’s why men and women are so important in the discussion. My husband takes the wait and see approach on EVERYTHING. It drives me crazy. I on the other hand have to obsess over it to the nth degree. But, I think that it’s a good balance because I relax a little more, and he is in tune more than he normally might be because I’m saying, “DON’T YOU THINK SOMETHING IS WRONG!!!!???”

    • I want to do both. It all started when we watched a documentary about horses and autism and lo and behold…the school is 30 minutes away! I was so excited! Then Chris suggested he go to a regular riding school…hence the discussion.

      In his defense, I have a friend who has a son with autism and we have extremely regular play dates so he does interact with a kid on the spectrum and has that play time so Chris wants to put him regular activities so he has more time with other kids. We have play dates with another kid, too, but it’s not nearly as frequent (since they are just play dates and the mom and I aren’t social “friends”, per se) so he thinks I should be enrolling him in activities with kids his own age.

      I get it, I really do, I just always hate to watch Jp being the kid left out but I don’t want to “cripple” him, either. A quandary, for certain!

      I love Dons answer. He’s a lot like my husband so I know I can count on him!

  6. Oh and this line? However, even people on the same team do not always want to run the same plays…
    Yeah, that was an ah ha moment for me. Just so you know. I need to stop looking at the disagreements as him being on the opposite team, but instead look at it for what it is

  7. Man, are we living similar lives! I say do both!! Stella loves to be with other kids – loves it – even if she doesn’t do it “right.” Ultimately, we want our kids to be happy.

    • Lol Jp LOVES kids. Loves them, wants to be around them, wants them to chase him…then it takes them about 14 seconds to size him up that he can’t respond or speak to them past “look!” or “See?” and then they wander off leaving him just standing there (or worse, following them while they look at him strangely). It breaks my poor mommy heart.

      I want him to have friends and I wish it was easier for him but I just worry about the day when he clues into being left behind. So, I at least like him to have activities where he doesn’t feel left out. πŸ™‚

      Can Stella answer questions? Just curious. And if so, which ones?

      • She answers questions when we ask them or people that she’s very familiar with. Like some of the reading on the pragmatic disorder (or similar) suggested, she does seem to have problems with more abstract things, such as favorites, why, or how. However if you ask if she wants something or to identify something it’s not a problem. If you ask something she’s unsure about, she often echoes the question. One improvement lately, is that she’s beginning to respond yes or no – something she’s not often done before.
        I guess we’re lucky that she’s still a bit younger than Jp. I haven’t noticed that kids find her different, unless they’re way older and then they don’t want to pal around with a little kid, anyway. She seems immune to any kind of rejection behavior (thank goodness!!).
        I don’t guess Stella has proper friends yet. But from what I know of kids, it’s a bit early for that anyway. When does Jp turn 4? I’m trying to figure out how far apart in age our kids are.

    • I swear to goodness, they are almost identical. Jp can answer “No” but not yes. He’s just starting to get to “yeah” but it’s more of an exclamation of excitement as opposed to a “yes, I would love some juice that sounds lovely.” πŸ™‚

      He can answer “What’s that?” (as long as the noun is familiar) or “Where is [noun]?” (again, as long as the noun is familiar). Which makes me think he is picking out the pieces of the question that he knows (think: listening to someone in a language you aren’t QUITE fluent in) as opposed to actually understanding the question. Anything outside of that gets you a repeated last word or a blank stare and walk away. If he makes a request (“I hungee”) and you respond with a question (“what do you want?”) you get the request again. This can go on for up to a whole minute.

      He also learns phrases. Does Stella? Like “open doors”. It means move, open anything, ect. He knows it means to open but doesn’t grasp that he doesn’t need to say doors. Does that make sense? Or like, “I want it”. Yes, it’s a sentence, but it’s a phrase. He doesn’t say “I get it” or “You want it”. There are only two words that he shows total and complete versatility with and that is Scary (he thinks everything is scary, scary monster, scary bug, scary BUCKET…I can’t make that up) and More (more cheetos, more water).

      I can get him to repeat ANYTHING. But he struggles to even repeat the longer (3-4 words) the sentence is. You can see him straining like it just doesn’t come naturally to him.

      And he turns three Sunday. How old is Stella now? I thought they were pretty close in age.

      The only thing that differs is that the eye contact issue is considered resolved. He used to avoid contact with strangers but around 2 and a half he started doing the opposite. He gets TOO close. I have to work on “boundaries” with him. Every time I say it now he knows to back up…but that took a TON of work. (And I think I just taught him that when I say it to back up as opposed to understanding what it means)

      • They are pretty close in age. Stella will be 3 in September.
        With the eye contact, it’s a matter of who she’s with and what she’s doing. Around here and with her normal caregivers, it’s fine. With strangers and when she’s too excited, it’s not. I think my kid just gets too amped up and until she’s calmer she can’t stop long enough to look at anyone or listen to them. When you try to force the issue, she will deliberately avoid eye contact. I think with time that will sort itself out.
        Stella’s speech is really pretty fantastic. She has memorized dozens of books and can recite them back with awesome intonation and pronunciation. She even uses them in context, which is why that diagnosis I found resonated so much with me.
        For instance, the other day I picked her up from school and it was raining. She started reciting “Cat in the Hat,” where “The sun did not shine, it was too wet to play…” If you say to her that she looks tired she’ll throw out some lines from “Don’t Let the Pigeon Stay Up Late.”
        She’ll ask for things with 3-4 words which are “hers.” I just got a “chocolate milk please” and we hear things like “open please” or “help please.” The kid has learned that please opens many doors!
        Are y’all having a big party?

      • Wow! Jp is not really into books! Much less memorizing them lol πŸ™‚ But memorizing is one of those “quirks”, right? I remember seeing that. Jp’s “unique skill” is that he is techie to a crazy degree. He can work every electronic, video game, computer program that you put in front of him. It’s crazy. He’ll get you to play and say things like hurry and careful. So, through the video games alone, I’ve taught him more vocabulary than you can imagine. In that realm, he’s a little genius. πŸ™‚

        I forgot about please! That one he has versatility with, too. One of the cutest for certain. Jp’s intonation is iffy. Some things that I think are clear but I notice when socializing I have to translate a lot.

        Instead of spending a bunch of money on a party that he just hangs out with adults (he loves adults and interacts with them well) we decided to take him to Seaworld because he is obsessed with fish and sharks. We are going with my sister in law and her daughter who is 7 and he worships her so I don’t have to worry about transitioning because he would follow his cousin to the end of the earth! Taking him alone would have been a nightmare but he follows Mya around like a puppy so at least I can give her directions and Jp will just follow. πŸ™‚

    • Though, I should say that the ability to learn even the phrases is getting better. I know they aren’t traditional but they are expanding his vocabulary and understanding greatly! I told his speech therapist that once that I thought his receptive understanding was a direct result of expanding his expressive vocabulary and she said it wasn’t true…but as a mom who is teaching and watching this…I encourage the phrases and and quirky way of learning. Because I swear, the more he can say, the more he can understand.

  8. As crazy as this may sound… Go with YOUR gut. We mommys have an instinct that dads don’t have. What you natural instinct about what your baby needs for happiness tells you is probably right. When working with BJs delays I did the same thing. We had play dates with other micro preemies and full term kids. It wasn’t always easy watching my son try to play with kids that were his same age but did so much more but I think watching them and striving to keep up helped him. And the play dates with other preemies helped us both. I was able to relax and didn’t have to explain as much. Dads see things in a lot more black and white and my husband had a hard time acknowledging anydifferences . I think your plan of participating with both worlds is a great idea. (I say worlds because sometimes it seemed like I was living in a completely different one for a while).

    • You’re right, sometimes it is BRUTAL to watch your child be the odd one out. Sometimes YOU want to be the one with the “smart” kid…and I know how totally selfish that is, but it’s true. I want him to be accepted and have fun but learn to act appropriately socially so I do both. But I’m always open to the possibility that I am wrong, too. πŸ™‚

  9. My 5 year old is Autistic. He has high functioning Aspergers. When it was first mentioned to me by someone whose grandchild had recently been diagnosed, I was livid. I very quietly walked away from her, mentally bitch-slapping her all the way home. Once I had calmed down, I started doing the research. My husband refused to even consider it. The more research I did, the more I realised that we going down this road. I’m not going to get into it here – but the full story is on my blog http://randomthoughtsfromsomewhereinireland.wordpress.com/2013/04/04/living-with-autism/ if you do want to read it.

    He is extremely smart and I know he is going to go far in life and accomplish so much, but I would give that ALL up in an instant, if it meant I wouldn’t have to have a repeat of yesterdays meltdown, where he screamed that he hated me.

    Anyhoo, I really enjoy your blog, so will be following it now πŸ™‚

    • I know all of those feelings. I think being a mom of child with challenges will always have it’s moments but the truth is, I don’t have autism and I told my mom I hated her plenty growing up!

      I can’t wait to catch on your blog and thank you for taking the time to read and comment. πŸ™‚

      • And if you want to feel better about a tantrum I have a few documented in here (more than a few). I think the last one was Rookie Mistake and an epic fallout. I still haven’t taken him back to the mall… Lol

      • I wish I could call them tantrums – unfortunately, there’s not much I can do about the meltdowns. All we can do is recognise when it’s about to happen, and prepare for it. I’ll take a look at them anyway, might help with my darling terror of a toddler Maddie πŸ˜‰

      • Lol Jp’s aren’t average. They are separation anxiety meltdowns. Oh, he has typical tantrums, too, but these are of a much more severe (violent) variety. πŸ™‚ If he could, him telling me he hated me would be there!

  10. I stumbled onto your blog and I can’t stop reading. Finally, FINALLY, someone who understands!! My son is 2.5 and sounds so much like JP. I have never felt more alone on this island of ‘something is wrong but I don’t know what’ until I read your blog. Thank you for being so honest! I wish our boys could play together and we could talk and cry and laugh and drink too much wine at 2pm πŸ™‚

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