Why it sucks to be my friend Paige
Jan 26, 2006 Parenting
My friend Paige worked in early intervention for some years before she became a mom herself. Her previous life is making this one uniquely hellish. Why? Because at every playdate, park romp, or friendly neighborhood potluck she can’t help but notice which kids might need a little extra help. She ends up in this dilemma: Does she (uninvited) tell a mom that her child could use an evaluation? Or does she keep her mouth shut and hope that with careful hints she might help the mom come to that conclusion herself? Or does she say nothing at all and hope the child’s pediatrician figures it out?
MizAmericanFamily and I have already signed Paige up to keep an eye on our own kids because we know these things are easy to miss. I’m always abusing Paige’s professional know-how anyway and because she’s kind and generous, she doesn’t seem to mind. (Today I got tips on how to break Madison of her awful toddler throwing habit sooner than later. The best one? Keep balls handy so when Madison get’s the tossing urge we can substitute a nice, soft ball for the bowl full of cheerios she was about to fling.)
Inspired by my delightful friend Paige, here are some tips on knowing when to get a developmental evaluation for your kid:
1. If you think something’s wrong then put your mind at ease: Go ahead and have it checked out. To that end, while I’m not recommending you become a slave to developmental charts, having a rough idea of what to expect when can help you keep an eye on how your child is progressing.
2. Since charts are based on averages it’s natural that some children will come to a task later than others. Paige tells me that a good indication that there’s something wrong is when the child him or herself is expressing frustration or unhappiness. In other words, if your late talker is unhappy because she can’t communicate with you then this is an indication that her late talking may be a problem.
3. Keep in mind your child’s prenatal history or (if an adoption sometime after birth) his or her care history before coming to your home. No, a child with a history of XY or Z is not guaranteed a certain outcome but risk factors are risk factors. If your child has a specific health history that potentially could impact his or her development, read up on the possible outcomes. I know this is easy to avoid because it’s scary. (I know.) But education is empowering.
4. Don’t rely solely on your pediatrician to bring it up. Lately doctors don’t have the time to fully evaluate the kids they see and sometimes they miss warning signs. If you’re concerned, talk to your doc but if he or she isn’t respectful or is too rushed to follow up, don’t assume your concerns aren’t valid. You can always contact your state’s early intervention program yourself and see about getting a developmental screening.
5. Don’t get caught up in the great label debate. Sometimes (especially on homeschooling lists but I digress) parents will argue about whether or not it hurts a child to get a label at an early age. While the labels themselves might be worth debating, the services that can come with some labels are not. Depending on an individual child’s challenges, early intervention can make the difference between surviving and thriving. As a family you will need to figure out which services and which service providers will best meet your child’s needs but you — and your child — should have the option. Getting your child evaluated and exploring ways to address his or her unique challenges is a positive step forward. And if your child is evaluated and everything’s fine, you can sleep easier.
6. Do-it-yourself has its limits. Some people figure if they get enough books out of the library that they can handle the intervention themselves. That’s not true. Paige herself has a child with special needs and she got early intervention from other people for him. Even though she had a head start on recognizing her son’s challenges, she still valued the input and support from other professionals. She says she understands that sometimes it’s hard for parents to recognize the need to ask for that help but she wants you all to know, it’s worth it.
Resources about early intervention:
–First Signs helps parents and educators learn more about early intervention and how to access state services. Their web site has loads of information including a helpful section about concerns — with a list of red flags and tips on broaching the subject.
–Easter Seals has a list of common early warning signs of motor problems.
–The American Academy of Pediatrics links to research about early intervention services.
–An overview of what constitutes a developmental delay
–ZeroToThree.org tells you what to expect in a developmental assessment
January 26th, 2006 at 3:45 pm
That Paige should get her own blog so she can tell people these things herself.
January 26th, 2006 at 4:05 pm
My son has been in EI speech therapy for about three months. At first I was worried about labeling him early, but because he’s so young, the therapy is all about play - very unstructured, very toddler-oriented. He gets to meet other kids and get out of the house (important to an extroverted little boy whose mommy is an introverted writer). Although I’m not convinced his speech delay was a real “problem,” the EI has certainly helped us figure out how to help him learn speech, which has helped us form closer attachments to him. Ultimately that’s been the biggest benefit for us.
January 26th, 2006 at 4:46 pm
thank you for this! we’re in the process of getting micah evaluated through our state’s early intervention program, and it’s been invaluable to pick the brain of a good friend of ours who works in the program. we suspect possible sensory processing issues. my friend, as well as several other folks who know micah and are familiar with the early intervention program, suspect that he won’t qualify for services because he doesn’t appear to have any developmental delays in the major categories they are looking for, and his sensory profile may not be “disordered” enough for him to qualify. but i figure it can’t hurt to get the evaluation done, and if he doesn’t qualify for services, or we’re not happy for the services, we’ll look elsewhere.
i have really mixed feelings about the whole label thing. some of micah’s issues look a lot like adhd, and talk about controversy! it’s hard to know where to even start doing research. personally, i don’t care at all about having a label, but i sure would like to have some tools to help micah feel more comfortable in his skin and feel less frustrated. and of course, i could use some tools now that my mothering repertoire of “carry him everywhere in the sling and nurse all day on demand” is no longer sufficient!
January 26th, 2006 at 10:05 pm
Great tips, thank you for posting them. The more people see and think about this, the better. Parents are often terrified of getting help. As a result, many kids fall through the cracks needlessly. It breaks my heart on a regular basis.
I’m like your friend Paige. Now that I know what to look for, I see. And then wonder whether and how to say something. Because I know that without intensive early intervention, my son would still have full blown autism instead of being the bright, spunky sweetheart he is. But denial is so strong when it comes to our kids. I know. I was once there too.
Mama Marta, I too had a clingmonster. Carried in the sling till my back spasmed from his weight. I recommend the book, “Raising a Sensory Smart Child,” by Lindsey Biel and Nancy Peske, as well as the one you’ve probably already heard of, “The Out of Sync Child,” which I honestly found less helpful. The right OT can do wonders with sensory issues.
January 27th, 2006 at 9:52 am
Wait– is this Paige a recent transplant from an east coast city and does her son’s name begin with E.?
January 27th, 2006 at 12:34 pm
Can I just say that I’m glad you think it sucks to be me because of my immense stores of EI knowledge and not because my thighs are the size of redwoods?
Can I also say that after chatting about EI yesterday I had a crazy dream last night that a HUGE EI team stopped by (without calling first–in my dream I knew they were coming, but assumed I’d get a call) and there I was in my pajamas, dirty dishes in the sink, Elliott watching tv–SCARY, SCARY dream.
Virtual wave to Melanie and the 3 (plus C of course)!
Thanks for adding to my 15 minutes of fame…
January 27th, 2006 at 12:41 pm
It sucks to be in the know and not be able to do much about it.
I have now got some seriously strained relationships because of it.
Great post. Thanks to both you and Paige.
January 29th, 2006 at 2:07 am
Hi, I’m a mother of 4 from rural BC Canada. My oldest is 24, my second,21, a boy with Fragile X, my 3rd an adopted boy(since birth) and my 4th, a girl also adopted and born cocaine addicted. She is my 5 year old’s biological sibling. I was able to nurse my 5 year old but my little girl was too ’sketchy’ and disorganized to nurse and had to be swaddled and her head held still for her to take her bottle. My 21 year old had a lot of problems especially in primary grades at school. After battling with Ministry of Education officials I ended up driving him to a school about 40 miles away for 5 years. I also worked with a multiple disabled little girl (born deaf/blind and hydrocephalic) for nearly 4 years but could not follow her into kindergarten since school board superintendent saw me as a troublemaker. Anyway, I’m a strong proponent of early intervention, but I can relate to the intrusiveness of helpful but possibly judgmental occ therapist and speech or infant development workers catching me with a floor full of toys and a sink full of dishes.
January 29th, 2006 at 12:03 pm
Well, my son (now 11) is a very tricky boy…very bright and from that very verbal at an early age, and this masked some of his issues (attentional/OT stuff). So he ended up not getting help until way after he would have been eligible for early intervention…which means it all came out of our pocket (OT, social skills groups, and on and on). Not that it wasn’t worth it, of course. I agree that the defensiveness/protectiveness is a big issue, but I have to say that the few times people (not as well trained as Paige) made offhand comments to me about Doodle’s obviously having something “off,” it was so vague and thus implied that there was something morally/emotionally wrong with him, which of course set the defenses up. If Paige wants to say things, I’d approach it very carefully and always couched in the viewpoint of her experience…maybe not directly but in the form of casual, offhand comments about things she used to see or the work she used to do…so as to pique the other mom’s interest rather than set her defenses up.
We did go the rounds of experts early on several times, and nobody found anything that they could say might not be ascribed to simple immaturity, but I think if an experienced OT had seen him s/he might have been able to say “hey, I see this happening” early on and thus Doodle would have gotten help earlier and a lot of heartache and $ would have been saved.
I find OT issues to be so much easier to take (as a mom) because they so obviously have a physical/brain basis rather than bringing in questions of morality or emotional health.