How come every else is allowed to compare my child to other kids if I am not?

yelling cell phone

Friday at 3:00. Phone rings. I look down and see the number of the speech therapy office staring back at me. Before I can even process how odd it is that they are calling me during our “hiatus” from speech while they re-approve the paperwork with insurance, I answer the phone. The hello and how are you’s are over much too quickly. That usually means someone is rushing through because the news is either good or bad.

Insurance has deemed that Jp is not going to qualify for speech.

He was denied because, while his receptive is well below the level of another child his age, his ability to learn phrases, label, and communicate make his overall expressive score age appropriate (though on the very bottom of that level, mathematically speaking). And with sessions being somewhere in the range of 200 dollars a week, it’s not something that we can afford out of pocket. As I sat there and had that conversation about how I do not believe my son is at a level that would not require professional support, so many things were going through my mind. It was as though my mouth was taking it’s cues from my brain and moving, there was even sound coming out of it…but my thoughts were in another time zone.

I was pleading my case to the therapist to appeal the decision with my insurance company with my words but my heart didn’t necessarily feel it. Though I rationally understand that my son’s speech patterns are atypical and his functional understanding of communication is not at a level that I would consider it an appropriate time to discontinue therapy, part of me just doesn’t know how affective it is anymore. Strange, I know, but I swear it is true.

You can not teach receptive language. Or, at least, you cannot teach a child to understand the functions of the English language at 30 minutes a session a few times a week.

Jp’s issue is the way that his brain takes in information. Right now he does not learn incidentally. He needs things presented in a slow and deliberate fashion and does best with repetition. When that is done, there is no limit to what he can learn or intake now. Things may or may never come to him as organically as other children but he is one smart cookie, of that, you can be certain. So, knowing that, I am not as stressed out about the situation as I would have been months ago. I still went through with the appeal process because what kind of parent would I be if I didn’t? Though I have to say that I won’t be taking back to WordPress in a rage if it doesn’t go through. He is improving leaps and bounds every day now and we haven’t been to therapy in two or three weeks. What he understands is based on how much vocabulary he knows and Chris and I work with him every chance that we get and between the two of us, he’s pretty much constantly engaged (or at least watching some type of program and he learns a ton from that alone). Plus, he has to be evaluated again at three so it’s not as if this is necessarily the end of the road as opposed to a break.

Though during the conversation there was an offhand comment that Dana made that caused me to step back and take pause. She brought up ECI (Early Childhood Intervention) and how Jp wouldn’t qualify. There has to be a deficit of 25% and Jp rides in at 23%. That scared me a little. It’s not to say that would be the route I would go as I really haven’t even put too much thought into whether we would do that or mainstream (It felt like a million miles away before she made that statement) but just the thought that my son is mere points away from qualifying but wouldn’t is a sobering thought.

Which means that he will be where?

In a public school in a regular class. With what is currently a receptive language disorder. I know that is a few years away -light years when it comes to the development of a child- and I certainly am not counting any chickens before they hatch (or some other relevant cliche) but that idea just broke my heart. I know every Mom that reads this that has a child with diagnosis will think that they would kill to receive my piece of news. I understand that in it’s way, it sounds wonderful, but it also sounds incredibly frightening, too.

mainstream

The one thing that I would never want for Jp would to be the bottom of his class, or to go through school having a hard time making friends, or being the “odd” kid.

Before you all go crazy pants in my comment section about how I am overreacting because I never know what the future may hold…I know that. He could end up being captain of the football team with a cheerleader girlfriend and I will take that egg on my face for thinking any of this in the first place, I promise. But looking at him struggle now around children his age -not quite knowing how to act or communicate with them in a way that they understand- and all I can think is that it is still so wonderful that he doesn’t seem to know that he is behind. He doesn’t feel insecure or inadequate yet, he doesn’t understand the rude things they can sometimes say, and he is blissfully unaware of the fact that when they run away he is actually being left behind for more fun games and other people.

Sooner rather than later, this will not be the case. And unless his development skyrockets as atypically quickly as it was atypically slow to begin with, he is going to reach an age quite quickly where he will start to understand what I see. At least with a diagnosis, he would be in a class with people that were like him and they could all toast their carbohydrate-only-lunch-items together in the cafeteria.

I find it highly ironic that everyone, particularly if your child develops atypically, tells you not to compare your child to other people’s children. In fact, it is the biggest mistake a parent of a child with any sort of developmental issue can possibly make and still hold onto their sanity. Yet, everyone around you is constantly comparing your child to others. Pediatricians, speech therapist, and school systems all compare your child to charts and graphs to tell you what is normal and what is atypical. They have mathematical equations and formulas to determine the proper “classification” for them. I already wrote a post about how studies have been done on Preemie’s falling through the cracks when it comes to these types of labels being needed for services. I am already starting to see how that can happen.

Though no matter what the outcome, I have a deep seated belief that Jp is in a home that is language rich and, for the hand that he was dealt, he is going to do wonders. I can’t help but be impressed with him on a daily basis and perhaps a few months out of speech will free us up to get him involved in some more social activities since we look like we are headed to mainstreaming.

There is always a silver lining…you just have to be willing to look.

silver-lining

Childhood Development Parenting Parenting and Childhood Development Uncategorized

Advertisements

Amber Perea View All →

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

17 Comments Leave a comment

  1. Honestly, one of my biggest fears is that my daughter will do so well that she no longer qualifies for services. I know that sounds backwards, but she DOES need more than other children her age and if she does meet some arbitrary standard at some point, it is because of the constant work done at home and at school. I need her in preschool receiving her therapies. I am not capable of providing the constant stimulation she needs on my own and caring for my other children. If she were to be found to not need services, I suspect a year later we would be qualifying again because she would fall behind.

    • Yep, I did a ton of research and I found that this was a typical occurrence for preemie’s with delays like my son’s. I have no doubt that when they re-evaluate we will be back in but right now we are building up confidence with two words at home and just working on expanding the vocabulary. At three, there will be expectations of more complicated sentence structures so I know we’ll qualify again.

      It’s just part of this unique experience that is raising my beautifully atypical Jp. Never a dull moment. ๐Ÿ™‚

  2. We have our 2nd NICU follow up in early June and I am so frightened of him being dismissed too soon. It’s a feeling that he’s going to need something. But I don’t know yet if its preemie mom paranoia or something I know at the gut level. So hard to wait and watch somedays. Hugs!

    • If it’s any consolation, we didn’t do any NIC-U follow-ups or any of that. And when speech came up, it was still handled by insurance (as long as he falls under certain deviations) but he has been in for a year and most likely will be again in the fall. ๐Ÿ™‚

  3. Well I don’t know if it will count as going crazy to say don’t get predictive about how he will be doing in JP’ terms almost and entire JP life from now. He’s made a lot of progress so if you want to get predictive maybe do a nice graph assuming he continues to progress at the average rate of the last quarter. I would guess it will look less grim.

    You are right about receptive language not being something they can teach him, so perhaps with a little less of his capacity taken up on the futile he will have that time to sort things through. Kids these days have a much more rigorous therapy schedule than used to be the norm without as much of a difference in outcome as you might expect. I loathed speech therapy. Sadly everyone is funded for that here so there was no getting out of it.

    Compare him. What a nutty thing to tell a parent. You can hardly help it can you? That’s like the beans in the nose thing only for parents to me. But don’t let those comparisons build a hyppthetical future for him that you fear. I

    To me if his brain is taking in more than he can process than the time he might have spent in speech therapy or some other intervention he doesn’t currently qualify for is time freed up for that. He seems alert and happy. He will make sense of his universe. When occupants of that universe are mean to him, and even if he is the highschool football star and future President someone will be, you’ve given him a foundation of love that will help him sort cope with that too.

    • Gareeth! How is everything? I was worried. I hope you are eating (at little bit at least).

      I don’t mean to be so fatalistic, it is not even in my nature really, and I do (mostly) have an extremely hopeful and positive outlook when it comes to what he will be able to accomplish. I worry about the social aspect…though it truth, I think that stems greatly from the fact that I am an extrovert and can’t imagine childhood that isn’t filled with friends. It is something that I have to work on.

      His progress is good, he’s good, we’re good as a family and I am grateful. I don’t intend to let my fears cloud his bright childhood and he can take all of the time that he needs to figure his and this world out, and as you said, I will always be here for him.

      But part of me just wants to go over and push down the kid that just pushed him, so it’s hard…. ๐Ÿ™‚

  4. It’s a shame that you get penalized for being good parents and working with him to improve his skills where other parents just make it the system’s responsibility. So does JP have Aspergers? I don’t purport to know much about autism and when I read posts, I’m generally able to recall things like “my fancy underpants were showing” than other details, so I’m sorry if this information is something I’ve already read.

    • Lol. Jp was a 31 week preemie that was under inter-uterine (giggity? Eeeew.. ๐Ÿ˜‰ distress and came emergency C-section that had a minor interventricular bleed after birth. Whew, that’s a mouthful! ๐Ÿ™‚

      So he was originally thought to have autism (hence my web address and what I was processing when I started this blog) and since then he has “outgrown” (or adapted away from, I don’t know) some of the autistic features (mainly he began using imaginative play and that is a main one in diagnosing autism) so he will probably never receive a diagnosis. Which is where it becomes dicey trying to get him services. School age programs only accept children with a diagnosis or are under a certain deviation (which he falls right below) so he’s too smart for the ECI and I’m too frightened to put him in regular programs because of his comprehension issues (which are getting better but he still has trouble understanding most people or following any direction outside of his wheelhouse of vocab).

      I hate that they are saying just because he can memorize phrases that they are willing to overlook the fact that he is only 4 points (4 points!) out of a “severe” delay in receptive language. That’s just nuts. Although, like I said, teaching someone the English language from the ground up really isn’t what they do in speech. I love to learn languages for fun so it’s been super helpful in teaching him since I know what it’s like to look at a language from the outside and try to learn. ๐Ÿ™‚

  5. You sound like your head and heart are in the right place and Jp is central to all your decisions. His progress would be largely due to the environment you provide for him not what any agency does.

    • Thank you. I just worry so about his social development. I know he will learn the language (I love languages and teaching him, for me, is pretty fun) but I can’t help but worry.

      Which is hilarious since I don’t think I even knew HOW to “fret” about things I couldn’t change until I had him! It was never my style lol. ๐Ÿ™‚ Ah, parenthood… ๐Ÿ˜‰

  6. Sorry to worry you . I did put a contact on my blog eons ago when I realized there were people like yourself that I only knew in blogs who had no other way of knowing stuff. Things have not been great,

    About the imaginitive play. I sort of hesitated to mention it before because it seemed like such good news to you that he wasn’t on the spectrum…I really question the whole he isn’t because he has this skill. On the soon to be redundant criteria that comes from a category where a person only needed one of three symptoms anyway and they key wording is failure to develop or delay in for all of them. His speech alone would give him the one from that area even if he had emerged from the womb with an action figure in hand.

    • I question it, too. I just know (only from what I was told from our local diagnostic center and my speech therapist) that currently (before a certain age) that would disqualify him.

      As for being happy that he was or wasn’t…I don’t think it truly matters to me either way. The label doesn’t change things for him or me other than the situation at hand. Autism in and of itself doesn’t frighten me and if it comes up again (or doesn’t) I won’t bat an eye. Being developmentally delayed or autism are tomato/tomato to me. The only thing that changes is the wording.

      And I don’t mean to worry…I just knew you were having issues with eating to the point if having someone come in and intervene and heard quite a bit from you…then nothing. I understand, of course, but I couldn’t help but think “oh, thank goodness!” When I saw your name. I’m sorry that things aren’t well, love.

  7. Jp will be fine! But I still understand your concern. Public schools can be scary but you know there are other options, like charter schools and homeschooling co-ops. I just found out about a school in my city where the kids go to class three days a week and the parents homeschool the other two days.

  8. I feel your pain. I hate, hate insurance companies. Ours only pays $4 of each weekly occupational therapy session to help Roo with her gross motor skills. It is ridiculous. I’m starting to make calls to see if they will cover more. It’s too much $$$ to pay out of pocket each week. Good luck!

    • Well, I actually got the call today that they are not going to cover it but it’s okay. We work so much at home that I will do my best to have him caught up as much as possible and work on more social activities because that is where I really worry. He’s a bright boy and I have faith he will learn the language facet but being more social is priceless! ๐Ÿ™‚

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: