Developmental Screening

Mary Hurlbut Photography

Eli had a developmental screening yesterday to see what is going on with his speech delay. I left feeling rather stunned. I know he isn’t where the pediatrician hoped he would be by now in the speech department, but I didn’t realize the problem was this extensive. I have to wait a couple weeks for the written report and besides being stunned, there was a lot of information being thrown at me in rapid succession. What I came away with was this. They say that in expressive language he scored at a 6 to 9 month old level. In the receptive language category he did slightly better, coming in at 12 to 15 months.

I never had any concerns about his abilities in other areas, but the examiners detected sensory problems. They said this is probably why his is so extremely active, rough and constantly moving, something about a lack of body awareness. They think there may be a swallowing problem behind his recent extremely picky eating. Not sure I completely follow what they were saying. I have a lot of reading to do. Of course having the actual report will help, but two weeks is a long time to wait when you’ve been given this sort of news.

Mary Hurlbut Photography

There were concerns about his eyes not working in sync with each other, so we’ll be visiting an opthamologist. And we are getting in to see an audiologist tomorrow to rule out any hearing issues, especially since I inherited moderate nerve deafness from my mother.

The recommendations yesterday included both one-on-one and group speech therapy as well as twice weekly occupational therapy.

They also recommended Eli and I try going gluten-free for a month as gluten sensitivities often go hand-in-hand with dairy allergies. It would also explain the craving he seems to have for all things made of wheat. The holidays and traveling are difficult enough when avoiding cow’s milk in all its forms. I’ll wait until the new year to do this experiment, or I’ll feel just too overwhelmed.

I’ve always felt confident about my decision to teach Eli Baby Signs, but I have received some criticism along the way from people who think I’ve caused his speech delay by allowing him to communicate this way. The speech evaluator commended me on having taught him so much signing. According to her, it hasn’t caused the delay, but is a very useful tool for him to have. He would be so much more frustrated, and we’d be seeing so many more behavioral challenges without it. It feels good to have a professional agree with my decision, and yesterday I needed something to feel good about!

So now my husband and I are trying to process all of this information (without actually having much information yet.)  How can he communicating at the level of a 6 to 9 month old when he uses around 40 ASL signs now. They said they gave some credit for signing, but what baby of that age has such an extensive vocabulary? Could it be that an accurate picture of your child can’t be gotten in a 1 hour time slot that was shared by two different evaluators (one for speech, the other for the other developmental areas).

Last night Eli was begging to watch his In Performance at the White House show of Latino music again, but my husband and I wanted to unwind with TV we were more interested in. Once Eli was settled in and nursing down I asked Jeff if he wanted to watch another program (other than Parenthood which was on at the time). Eli immediately popped up and began signing “music” which is the sign he uses for the In Performance… show. It seems like he understands so much of what we are saying, even just between us adults, these days. Does that fit with a 12-15 month range? I mean, maybe it does and my expectations are just very low. I don’t know.

I visited a friend and her children today and told her a bit about all of this. She comes from an AP/natural living perspective. She said that she avoided having her son screened because she knew that he would be pegged as delayed and she didn’t want him to be labeled. Instead she has worked with him (she is a very dedicated home-schooling mother) and he has come along at his own rate of development. She sees that there is a financial incentive for labels to be given to any child brought in by parents with concerns because that soon leads to the purchase of expensive therapy.

We may have insurance for a limited time now, so I plan on taking advantage of our benefits as much as I can while I have that option. I guess I’d rather error on that side of the equation. But it does make me think. Perhaps it is ok for Eli to learn to speak a bit later than “the norm.” I don’t want to medicalize what may be what is healthy and fine for him. But inaction might mean missing a good opportunity for early intervention if there truly is a problem other than a different personal developmental timetable involved. And I don’t know how much of my thinking is rational and how much is parental defensiveness or denial at this point.

I know this post may be a bit disjointed and incoherant. Mostly I am writing to help myself process my own thoughts. I would, however, welcome any insights, personal experiences or opinions people that read this might want to share.

Thanks for reading.

Karen

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21 Comments

  1. Jason Shepard said,

    December 15, 2011 at 7:27 pm

    Hi, Sis:

    I have avoided reading or responding to your posts on your blog due to our completely opposite ways of thinking. However, I understand your concern at this point and I would like to make some observations since Tyler has many of the same “issues” that Eli has been “diagnosed” with.

    First of all, Tyler doesn’t have the speech problem, however, there are two specific differences between Eli and Tyler. Tyler was not taught sign language as we were told it *would* delay his speech and Tyler was not breastfed. Before I continue on this comment, I need to say this:

    DISCLAIMER: Your breastfeeding habits are the primary reason I have not read or commented on your blog before. I find it incredibly disturbing that you are still breastfeeding my nephew well past the age of one year old and after Eli has developed teeth (especially since medical evidence has proven that sucking on a nipple for extended periods will damage his teeth in the long run). I agree that breastfeeding should be done whenever possible in the early stages, but beyond a year is just…well…disturbing and the fact that you have also allowed another woman to provide her breastmilk to Eli is even further into the disturbing territory. Therefore, take my next statement as you will now that you are fully informed.

    Breastfeeding will inhibit their speech the same as taking a bottle for too long or sucking on a binky for too long has the increased chance of delaying the learning of speech. At this point, I would strongly suggest transitioning Eli to a sippy cup would be in his best interest as far as his speech ability goes. I would also minimize your usage of sign language now that Eli is old enough to communicate on his own using language to allow his language to develop properly. I’d also expect that your visit to the “ear doctor” will provide some valuable insight. Many children who have hearing loss or “auditory processing disorder” also have great difficulty learning the spoken language. My son, Dakota-James, has the auditory processing disorder and has speech problems. Because he doesn’t hear the words correctly, it is difficult for him to form the words correctly himself and this leads to to the difficulty with language. There are ways to work around this, so don’t panic. If it comes to that, we’ll work through it. I, personally, wouldn’t put him in speech therapy until you hear from the audiologist as that visit may be very enlightening.

    Also, I definitely agree with your friend that those types of “developmental assessments” can be quite skewed toward finding a diagnosis even where none exists. This is especially true if you, as a parent, voice a concern over a particular area. We, as a society, have a tendency to overmedicate, overuse therapy, and generally “over-doctor” our children. It’s an undeniable fact that corporations only make money if you are buying something from them, so pharmaceutical and medical corporations don’t make money on healthy children. I would concentrate a bit more on those areas that you have been told are behind, but I certainly wouldn’t get all worked up or panic over them unless you see obvious signs of delay. It’s likely they aren’t all they are made up to be, but shouldn’t be ignored, either.

    -Jason

    • December 16, 2011 at 5:41 am

      Jason- Thank you for taking the time to write such a long comment to this post. As for your concerns of Eli being harmed by the “disturbing” practice of extended breastfeeding, the research actually should put your mind at ease. The American Academy of Pediatrics recommends children to be nursed “AT LEAST 12 months and thereafter for as long as mutually desired.” The World Health Organization goes further to recommend “AT LEAST TWO YEARS.” There are many reasons for this and I will touch on only a few. Young toddlers still have immature immune systems yet it is a time in their lives when their mobility and lack of common sense lead to much exposure to pathogens. The antibodies present in breast milk go a long way to help a toddler fight off infection and illness. This directly affects speech and language as fewer colds = fewer ear infections. One mom on a blog I follow BecomingSarah.com is really reaping the benefits of extended nursing right now. Her (vaccinated- sometimes vaccines fail) toddler came down with whooping cough. Here is a line from her blog, “It’s a good thing you’re still nursing her, the second pediatrician said….We can give her steroids or antibiotics, but right now you’re her healthiest line of defense. The best thing you can do is to give her as much of your milk as you possibly can.” If Eli is ever to get really, really sick I’m glad I’m still able to give him the support of my antibodies. Actually, I did have this happen a bit less dramatically this summer when Eli had Hand, Foot and Mouth Disease. Additionally Eli is quite allergic to cow’s milk. We give him goat’s milk but it is very expensive. (Eli has used a sippy cup since he was 12 months old.) Since being sick this summer he has never gone back to being the good eater he formerly was. Recently he has descended into the realm of the horribly picky eater. Breast milk is the most perfect form of human nutrition in as much as it is formulated for the sole purpose of nourishing humans. While he is on this kick of wanting to consume only bread products and ketchup I am glad to know at least here is one quality form of nutrients that he will willingly take.

      You are right that sucking on a bottle nipple can have negative effects in oral development. That form of sucking is very different than the mechanics of breast feeding, however. Many medical journal articles can be found addressing the relationship between nursing and oral development. The following quote is taken from the journal article “Early Weaning: implications to oral motor development” (www.jped.com.br/conteudo/03-79-01-07/ing.asp) “The literature has pointed out the importance of sucking during breastfeeding, since it promotes the proper development of speech organs as far as mobility, strength, posture, and the development of breathing, chewing, swallowing, and articulation of speech sounds (13) are concerned. Therefore, it reduces the presence of bad oral habits and several speech-language pathologies (11,14-19).” Furthermore children that are nursed rarely feel the need for other sucking outlets such as continued use of the bottle, the pacifier or thumb sucking that can cause oral development problems.

      As for the use of signing… As stated in my post, the examiner, who is a speech and language pathologist, said that teaching him sign was exactly what I SHOULD be doing to help him. This is her area of expertise. She is current on the most recent findings of studies in the area of early language acquisition. Sign language is a language. It involves symbols being used to represent ideas that can be communicated from one person to another. While Eli can’t speak verbally, he is still developing the part of his brain that deals with language by using sign.

      I agree that the hearing test will be enlightening. It is scheduled for this morning and I will likely post the results later.

      Nothing I write here should be taken as criticism for the different choices you have made with your children. You and Courtney are caring parents who make the decisions you deem to be in the best interests of your children. I respect your decisions as such. And even though you may not agree with the choices my family is making, we are doing the exact same thing. I hope you can extend us that same respect.

      • Jason Shepard said,

        December 18, 2011 at 11:15 am

        Before I get into my response, I would like to state: Please, if you are interested in commenting, do so. Don’t let a disagreement between Karen and I affect your desire to voice your own as I won’t reply to you – I promise. I am, and always have been, the black sheep of the family with dissenting views from the rest. Karen’s ideologies are in keeping with the vast majority of our family.

        I guess I should clarify something first of all: Giving Eli breastmilk is perfectly fine and I don’t see an issue with that, but breastfeeding him at his age is another story. And that doesn’t even cover giving him another woman’s breastmilk, which is what bothered me the most, by far. However, it is “to each their own” and Eli is your child and not ours.

        The above feelings were the precise reason I had not, up until this particular article, read your blog or commented on it. I will go back to that policy now. I apologize if my posting has caused any “issues” with your regular responders. I told Courtney I shouldn’t post here and I should’ve listened to myself.

  2. Jacki said,

    December 15, 2011 at 9:57 pm

    I’ve always said from day one that my nephew is a genius and I’m not changing that statement!! You guys are terrific parents and will do what is right for Eli. Keep up the good work! Love always, aunt Jacki

    • December 18, 2011 at 1:15 pm

      Well, they say that Einstein didn’t talk until age 4… so you may be right! Thank you, as always, for your support! You’ve always been Eli’s biggest fan and knowing he has such support warms his mama’s heart 🙂

  3. Christine said,

    December 17, 2011 at 10:39 pm

    Oh, my. I feel like I am hanging with my own family here, lol!…..I have to throw in my 2 (or 4 or 6) cents here.
    1 – Although I believe that many “developmental delays” are nothing more than natural human variation, early intervention and therapy can help the child to fit in to society better, giving them a hand up when it comes to success in school and beyond, into adulthood.
    2 – Children are capable of absorbing more than one language at a time. Being able to effectively communicate with the parents builds the child’s confidence and if there are no problems, the talking will come on its own accord. My own nephew didn’t really speak until he was 2 1/2 years old. He was just on his own timeline…..
    3 – Gluten and dairy problems do go hand-in-hand. I have problems with both myself. Be careful if you buy “gluten free” products, many of them contain corn gluten which can also cause reactions. I like to use rice flour myself. I think that your continuing to breastfeed is very beneficial to your son, especially since he is unable to tolerate cows milk. There are enzymes and beneficial bacteria in your milk that are essential to his good health!

    • December 18, 2011 at 8:42 am

      Thank you for your 2 (or 4 or 6) cents, Christine! I’m afraid the family disagreement has kept other people from feeling like they want to leave comments, and I really do need to hear from other people who have “been there.” Strangely enough it is the gluten issue that has me stressed out the most right now. I have found the whole dairy-free thing to be so difficult and to now take on the further and extensive limitations of a gluten-free diet feels overwhelming. Thanks for the warning about corn gluten. When we get to the point of going gluten-free after the holidays, if I have questions may I contact you?

  4. December 18, 2011 at 11:15 am

    Hi Karen – Congratulations on keeping your cool while trying to iron out some very difficult family issues in a public forum! If my brother had spelled out his disapproval of me in an unusually long post on my blog, I would have had a hard time responding in a ladylike manner 🙂

    That aside, I wanted to share with you my own experience with my son, who’s 13 now. He was very late to communicate, but when he finally started, he vaulted over months of development. I’m not a doctor, nor do I have an arsenal of research at my fingertips … I just wanted to let you know that there are some cases out there where a delayed child turns out fine. My son taught himself to read at age 3, skipped grade 4, and just brought home a straight A+ report card from a private school for gifted children where the curriculum is accelerated to about 2 years past his actual grade level (i.e., he’s doing 10th grade work in 8th grade).

    Your level-headed approach sounds like you’re on just the right track. By keeping an open mind, and collecting as much information as you can, you’re positioning yourself to make the right decisions for your child… and you know him the best out of anyone, whether doctor or brother.

    Going gluten-free is absolutely a huge pain in the neck, especially when you combine it with other food avoidance. Waiting until after the holidays is a good strategy, because eating at other homes or in restaurants is the hardest part of the whole thing. When you do decide to start eliminating gluten, try to find a source for pantry staples, so you don’t feel as though you have to make everything from scratch every day. Places like Whole Foods have a nice variety of breads, english muffins, snack bars, etc. that come in very handy when someone is starving and you just can’t deal with making all those healthy ingredients in your fridge turn into a real dish. It’s ok to start by eating the same breakfast every day, or the same lunch for a week, rather than to try to recreate your normal menu in a gluten free guise. Once you get used to it, and your son finds a few favorite foods he enjoys, things get easier.

    Best of luck!
    Lisa @ Allergy Free Vintage Cookery

    • December 18, 2011 at 12:09 pm

      Lisa, thank you for sharing your experiences 🙂 Your suggestions for how to get started make it seem a bit more do-able… just the kind of information I am searching for! I know I will be all over your blog for those incredible looking recipes in the weeks to come. Thank you for making available such a wonderful resource!

  5. December 18, 2011 at 11:17 am

    P.S. – I breastfed my three sons past the age of one as well, and their teeth are fine 🙂

  6. Kelley said,

    December 18, 2011 at 9:15 pm

    Karen-
    You are a very strong mom. I love that you are doing everything you can to help your son. He is very lucky! I also think you need to take what other people say with a grain on salt (including me). Use your instincts and just do the best you can for him. (Which you clearly are.)

    Although she doesnt breastfeed anymore she is very much into her paci.. which sometimes limits her talking.We have taught our daughter some sign language too and it has helped her communicate with us so much better. She can express what she wants and still talks when she wants.

    Thank you for sharing your story!

    • December 18, 2011 at 10:11 pm

      Thank you for the support and advice 🙂 Like you, I love the signing. It’s great to know what Eli wants and a little bit about what he is thinking.

  7. Inder said,

    December 19, 2011 at 4:05 pm

    Ah. I remember the stress of this time with Joe very well. Like Eli, Joe shows some “sensory-seeking” behaviors.

    I wouldn’t put too much stock in the “expressive speech” assessed at 6-9 month mark, except to be glad that this pretty much guarantees you will qualify for EI services. As hard as it is, you want that number to be lower, rather than higher. I had a lot of mixed feelings as well, because I had been insisting for some time that there was an issue with Joe’s expressive abilities, and friends had implied that I was being too uptight, or that I had caused his delay (by using sign language, or by attending to Joe’s needs). Getting those results was both painful and validating for me.

    But seeing those cold numbers on paper is hard, I warn you. I had a pretty hard week when we got the written report for Joe. At 18 months, Joe was basically mute. His only “word” was “eh.” He communicated by pointing. At 2 years, he still said very little, but had learned 30-40 signs. So he sounds very similar to Eli.

    Remember, just because a child’s speech is delayed does not mean that they are cognitively behind. When Joe did start speaking more, the *ideas* he was expressing were appropriate to his actual age, even if his expressive abilities lagged behind. So although his speaking abilities are less than his peers, he plays pretend and engages in abstract thought appropriate to this age, if that makes sense. Like Eli, he had a prodigious vocabulary of sign language when he was assessed, but that was not taken into account in measuring his “expressive abilities.” However, we knew, and our speech pathologist agreed, that his sign language vocabulary was a great sign that his cognitive symbolic speech abilities were ahead of his speaking abilities. The cognitive stepping stones were there, and that’s huge.

    With respect to those parents who choose to opt out, I see no down-side to early intervention. Our experience with speech therapy has been nothing but positive and gentle. It’s basically play therapy, and Joe looks forward to his sessions! I wonder if some “natural/attachment” parenting folks opt out based on misconceptions of how the program works. I have not felt that Joe has been unduly “labeled” – rather, I have felt very supported in my parenting decisions and it has calmed my worry and anxiety about Joe. This is just my two cents, but personally, I am very glad we made the decision to do the assessment, although it was painful at the time.

    (P.S., I’m still nursing my 2 and a half year old. I’ve treasured my time nursing my baby boy, and I am sad to see it end, as Joe has been weaning himself for the past several months. My doctors and Joe’s doctors are thrilled that I have continued so long and see it as a major health benefit. I think extended nursing is GREAT. Good job, mama!)

    • Inder said,

      December 19, 2011 at 6:29 pm

      One other thought: One reason we pursued EI was that it is usually free to families that qualify. Our insurance does not cover speech therapy for “developmental delays” so this has been a wonderful resource for us. We get once weekly in-home speech therapy, free of charge. At three, Joe will be reassessed, and if he still qualifies (i.e., still has significant delays) the local school district will take over services. While I understand the arguments about “labeling” keeping a lot of therapists in business, the state provides these services here because it believes that providing early intervention saves the taxpayers money in the long run, by resolving as many issues as possible before the start of kindergarten. Obviously, you can go too far with “pathologizing” normal variations in development, but on the other hand, early intervention can be very helpful in many cases – it’s a difficult line to walk.

      • December 19, 2011 at 11:10 pm

        Thank you for chiming in!

        I think I would definitely rather error on the side of giving “too much” assistence then to get farther down the road when problems aren’t so easy to correct, and wish I’d done more. As soon as the recommendations arrive we’ll get started.

        When we lose our insurance next summer (if we don’t have something new in place by then) maybe we can get help from the program you mentioned.

        I’m hoping Eli will really enjoy his therapy sessions, and I’m hoping to learn a lot of techniques that I can then continue to do with him at home. He did seem very intrigued by the center where I took him for the evaluation. He got upset that we had to leave and he couldn’t explore the therapy room when it was over.

      • Inder said,

        December 20, 2011 at 2:18 pm

        Just FYI, depending on your area, you may qualify for some services through your Regional Center or Early Intervention/Early Start regardless of your insurance status. Where I am in California, the budget is such that you have to prove that your insurance will not cover therapy in order to get any local county/state services, but in other areas this is not required. (Once you’ve shown that your insurance does not cover it, there is no further income-based screening.)

        Here we also have the Family Resource Center, which provides parent-to-parent support for families with children with developmental delays. That’s a great starting place if you’re trying to figure out how to navigate the system, which is daunting at first!

        We’ve learned a lot from our speech therapist about how to encourage Joe to speak more. I don’t think the one-hour sessions do all that much, but what we learn during those times and use in our every day life probably helps the most. So it’s definitely a lot about parent-education.

      • December 21, 2011 at 11:47 am

        We do have a Regional Center. I’m now in contact with them. Thanks!

  8. jensellers said,

    December 19, 2011 at 4:25 pm

    I’m always for the both/and approach: 1) know that Eli is fine and developing just as he’s supposed to, and 2) get the support you feel will truly be supportive. As you know, I also nursed the girls right up to age 3 and where there is evidence on one side (there’s something wrong with breastfeeding or breastfeeding for long periods), there is always evidence on the other as well. “Evidence” can be used to support any viewpoint.

    You are doing a fabulous job of finding your way, and you will continue to! Ken and I kept saying, “Well, by the time she’s 15, she probably won’t wet the bed any more” and “Well, by the time she’s 15, she’ll probably be talking more or less normally” and “Well, by the time she’s 15 she’ll probably be walking/reading/etc.”

    Good for you for thinking things through thoroughly, for asking for help, and for following your own intuition. These will all serve you well.

    Love,
    Jen

    • December 19, 2011 at 11:12 pm

      Thanks for your support, Jen! Taking the “long view” as you suggest does help to keep things in perspective 🙂

  9. December 21, 2011 at 11:43 am

    Oh gosh. Well. Anyway, I’m The Encourager and I’m here to offer Encouragement, which is of course exactly what you need at this time. Good grief! Your little boy is precious, just beautiful really. My cousin’s son was diagnosed with similar things about a year ago, and you absolutely, positively would not believe the progress he has made with therapy – unbelievable! So I’m praying you will pick up your heart, put on your “I am Mommy hear me roar!” hat and press on.

    BTW, my kids were adopted from a Romanian orphanage when each was age one – malnourished, abandoned, abused, neglected – and you wouldn’t believe the awesome teens they have turned into, I swear I could eat them up … oh, yeah, and one of them has Fetal Alcohol Syndrome (birth mom drank) – she’s amazing, just amazing. Smart, beautiful, and extremely personable. So I hope you won’t listen to people who tell you that what you do or don’t do will damage your child’s life … I fought for my kids against many, many doctors who simply wanted to attack *me* for the way my kids were, but this Mama Bear fought on for her kids. So glad I did. {{{Hugs}}}

    Mary

    • December 21, 2011 at 11:46 am

      You are indeed an Encourager… Thank you for bringing your wonderful gift to my little section of blogland. I really appreciate your comment. 🙂


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