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Sensory Processing Disorder -- long post sorry!
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Anonymous
| Hi, my DC has not yet been "diagnosed" with SPD, but we started the county intervention process and the person we are dealing with commented that she suspected that might be what our DC has. I've noticed lots of postings about SPD and, I have to be honest, as the days go by I'm getting more and more cynical about it. We've done a crazy battery of medical testing (at least seven different specialists, including a neurologist) and none of the specialists has come up with any concerns with respect to their area of specialization. This whole ball got rolling because our pediatrician felt like our DC (20 months) was not really talking and should be tested. Then one referral led to another, although all have been fairly positive in outcome. The only other "symptom" that has been noticeable is that DC is very, very busy. Always on the move, although DC can stop and be really focused on something, but rarely sits down except to read a book. I'll be honest, when the county person first suggested SPD, after jumping through all the medical hoops we've jumped through, I was just kind of excited to identify something, ANYTHING, to explain why we were going through this whole process. But the more I've thought about it, frankly the more concerned I am that some train has left the station and I can't get off. What I mean by that is, but for the speech delay, we didn't really notice anything else going on with DC that concerned us, although we had noticed that DC tended to do things about two months after our friends' kids did them, but we just figured many kids do things at a different pace. DC is very social and the neurologist had no concerns at all about autism or anything like that. He just recommended we look into speech therapy. To cut this short and get to the point, with respect to the things that the county person thinks are "symptoms" of something, my husband and I think they're just part of DC's quirky personality, which frankly is like me. DC is always described by daycare teachers as happy and friendly, and DC rarely throws tantrums (unless DC is sick) or demonstrates frustration with things, despite the language delay. Since I've been looking into it, I've noticed that it seems like so many people's kids are being diagnosed now with SPD. So I'm starting to get sort of a panicked sensation that we're embarking on a path to try to "fix" something that really isn't broken. I guess I'm wondering whether anyone else felt this way? Have any of you done therapy, etc., and ultimately concluded that maybe your DC was misdiagnosed? I'm really not looking to validate my own opnion, but I really am feeling such a strong gut reaction now that this is not the right thing for our DC -- so I'm wondering whether it is worthwhile to listen to my gut? |
Anonymous
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Your feelings are very common. oftentimes parents do want to believe their child is simply quirky and that's not much wrong, really. I used to think this way about my own DC. But I was the one who felt in my gut that something was wrong. DH didn't, he thought DC was gifted and slightly quirky. He read books on gifted children and tried to prove to me many gifted kids are indeed quirky.
We argued for one yr about this and DH finally told me he was sick and tired of me saying there was something wrong with DC. So to put things to rest we agreed to see a psychiatrist. Why a psychiatrist? Because DH said he didn't want me to keep talking about DC's "issues" after we saw a professional, so he was determined to find the BEST. A psychiatrist is better than a psychologist, even a developmental psychologist. And he didn't just go to a psychiatrist, he went to the best one. The only one who's a world renowned expert on autism and developmental issues, Dr. Stanley Greenspan in Bethesda, MD. He cost us an arm and a leg for that initial consult. We had to save up for this appointment - for which we waited 6 months to get btw. But it was soo worth it. Greenspan had seen DC's video clips before hand. In five minutes he said DC was not on the spectrum, but had something called a sensory regulatory disorder and he was only mildly affected. BUT he did say it would affect him in his life if we didn't do something about it. So then started the hours and hours of therapy (home and professional OT), reading tons of books written by Greenspan, etc..etc.. Had we just continued on the path of believing DC was simply quirky we would not have caught these issues in time to make a significant difference in DC. Now, two years later, DC is a hugely different person. But for the therapy we put him in and the hours of floortime we did at home, he would be so different. He used to be hyper. Now he's not, he's the most calm kid in his class and even on the playground. He used to be anxious about certain things but got over much of his anxiety. He was always social, but as he got older, socialization became more difficult (because the challenges increase). That is the one area we're still working on. And my son had a two month speech delay, not significant at all... You lose nothing but money in taking your child to a psychiatrist for an eval. Floortime and OT can be done at home if you can't afford it also. You lose nothing in doing home therapy. The only thing you may lose is the notion that your child is simply quirky and that he does have real issues that need intervention. You have to be prepared for this because I can tell you that is the hardest mountain to climb. DH and I are well educated and were athletic and got terrific grades in school.. and for some stupid reason, we thought DC would simply be like us. Yes, he is gifted. But he still has issues and they need to be corrected now. Greenspan says the brain is plastic when children are very young. SO that's the time to make the most significant changes. Yet so many people think it's simply quirky behavior and let things slide. Suddenly their child is 8 years old and can't seem to float through school or have many friends as other kids seem to. And then it'll be harder to make the changes in the brain. So please do your child a huge favor for the sake of his life and see the best possible psychiatrist you can find. I rec Dr. Greenspan because he's the father of floortime and he's the only one I know who wrote about sensory regulatory disorders. He started that ICDL conference also. The guy is a genius on these issues, way beyond Krieger at Johns Hopkins and way beyond mere psychologists who are all trying to ride his coat tail. You have nothing to lose and your child has everything to gain. |
Anonymous
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I would take a step back from all of the diagnostics because at 20 months, your son is still so young. There are so many developmental leaps between two and three, and things will become more clear with time. It's great that your son is already in the early intervention program and receiving services. Seven specialists and a battery of tests seems like an awful lot for a 20 month old--I imagine it must have been very stressful for you.
As far as fixing something that isn't broken--fortunately the treatment for SPD is play-based and can be really fun for kids. My son without special needs LOVED when the OT came to our home to work with his sister and he actually got a lot out of it too. But I definitely understand your concerns. SPD has become a bit of a catch-all label and it can be very diffifcult to tease out sensory issues from toddler quirks/temperament/personality. I don't know that an official diagnosis of SPD will change anything for your son. And of course it's all so subjective, and one therapist's opinion doesn't a diagnosis make. Others may disagree and hopefully will offer their perspectives, but I would just focus on the particular therapies your son is receiving--early intervention is a parent-education model and the therapists should be able to give you strategies to help with your son in his challenging areas--and not worry about a label right now. I went through this with my daughter and it really helped to take one day at a time and just try to take a deep breath and enjoy her. Good luck! |
Anonymous
PP here...I'm sorry, I kept referring to your son. I apologize if DC is your daughter! 
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Anonymous
| 20 months old is very very young still. If your child is meeting milestones but just a few months later than other kids, I wouldn't worry so much right now. My son has sensory issues and I had no idea until he started preschool and then is was quite apparent. Deal with the immediate speech issue now but don't be surprised at how much language comes in in the next 6 months. SPD is not an official diagnosis anyway. |
Anonymous
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I must disagree. 20 Mos is not young. It's the PERFECT time to make the greatest changes in her/his brain if she really needs it. And as the PP mentioned, OT and floortime are actually thoroughly enjoyable for a child. It's all play based and lots of running, jumpin, climbing, peeka boo, other games like that...
SPD is not yet in the DSM, but it is a diagnosis that many, many are recognizing. It is classified, however, by ICDL. Even the Psychiatric Times is suggesting psychiatrists who can't find appropriate DSM's for certain children that meet specific criteria diagnose these children with either NVLD or SPD. Eventually it will be in the DSM. But it is starting to be mentioned in reputable journals. And See http://en.wikipedia.org/wiki/Sensory_processing_disorder and http://www.spdbayarea.org/SPD_diagnosis.html and http://journals.lww.com/iycjournal/Abstract/2004/10000/Regulatory_Disorder_Identification,_Diagnosis,_and.6.aspx and http://www.psychiatrictimes.com/display/article/10168/54261?pageNumber=2 There is a huge debate and the insurance industry is likely fighting this all the way to avoid this DSM for Sensory Regulatory Disorder. If this becomes a real DSM of it's own, then that means insurance companies may be pressured to cover and provide benefits for therapy. More than 30% of children have this disorder in varying degrees, 15% of who are severely affected. Can you imagine the expense for treating them? See this article: http://scienceblogs.com/purepedantry/2007/06/nytimes_on_sensory_integration.php Dr. Greenspan states that a child as early as 4 or 5 months can show signs of having a regulatory disorder or some devel issues. I know this is in direct contradictionto the PP. But with all due respect, Greenspan is a Harvard educated psychiatrist who is world renowned in autism, reg disorder, and developmental issues, and children's healthy development. He's a clinical professor and founder of the ICDL. He's authored over fifty books. Greenspan says when a baby doesn't respond to his name, doesn't smile when you smile at it, providing all else is okay and he or she is not sick, or if you need to really amp it up to get a smile out of your baby, then they may need to be checked out. Because healthy, neurotypical babies do smile and kick and react very positively at the mere smile of their mother or father oftentimes. Sometimes the signs are more subtle and will be recognized when the child is a bit older. But either way, the most profound results are seen when children who are under the age of 3 and receive therapy. But changes can be made, but more slowly, when children are a bit older. Please read Greenspan's books and you will see that for any child, the earlier you begin therapy the better for that child. Because therapy is oftentimes fun anyway, what do you have to lose. Here are some ICDL articles written by Dr. Greenspan that I hope will help in your searh for the right answer for your child. Some of these discuss autism and I know your child is not on the spectrum. But the reasoning and philosophy on treatment is the same: the earlier the better for your child. http://www.icdl.com/distance/webRadio/documents/8-27-2008.pdf http://www.icdl.com/dirFloortime/infant/documents/CDC-ICDLGuidelinesforEarlyID-PreventiveIntervention-11-11-06.pdf I apologize if I am pushing this. I do not work for Greenspan's office and I am not friends with anyone in his office! I am simply someone who sees children with issues regularly and have seen way too many parents who just don't do anything about it at all. I was at a dinner the other day and a mother was complaining about her child's issues. It was clear to me that child has some issues. I gently suggested that she be evaluated just to make sure and so mom could have peace of mind. The mom became silent and was utterly shocked and speechless. And that mom happens to be a nurse also. So it IS indeed a painful issue for many parents and they'd rather just believe nothing is wrong. One way they do this is by postponing getting that eval. |
Anonymous
OP, I'm trying to understand the issues your child supposedly has, thet have lead you to all these referrals. 1. You child wasn't talking at 20 months. 2. Your child has high energy and is very mobile. Those things sound very normal for a toddler, esp a boy. Are there any other issues or concerns that are prompting all these evaluations and referrals?? All the medical tests and neurological evaluations were because a 20 month old boy wasn't talking? I feel like I am missing somehting. |
Anonymous
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Hi, OP. So, it looks like you started all these tests because your ped said that your child isn't talking enough at 20 months. I'm not a ped, but I think that is a little too young to gauge the level of talking. I have one child that talked early, and one that talked later, both normal.
And then you had more tests done, and someone said he moves around too much. Ok, he's 20 months old! Of course he moves around a lot. It sounds like your instincts are telling you to drop the whole thing. I think you should drop the whole thing myself. (I have heard that autism needs to caught early. Since your child doesn't have that, then drop the whole thing.) And next time you have to take your child to a ped for a checkup, take him/her to a different ped in a different practice. Also, you can look up yourself in "What to Expect the Toddler Years" the developmental milestones. But really, it doesn't matter if your child is 2 months behind others. Kids all develop differently. |
Anonymous
| PP here. I would like to also add that after my aunt worked with many different doctors and medical professionals, she had much less faith in them. Some medical professionals are there for the $, and some are just inept. So you can't always trust them. |
Anonymous
| Hi OP. I don't have time to read all the responses but I'm sure they are helpful (the people here are very knowledgeable about SPD). My daughter is almost 3 and was officially diagnosed this September at 30 months. The very first signs showed up at about 21-22 months, and my daughter had no previous delays and/or behavior issues. Basically, I would say that it's too early to tell either way but also too early to be dismissive. Keep an eye on him, read The Out-of-Sync Child, and generally inform yourself as much as possible so you know what to look for going forward. |
Anonymous
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OP, I recommend the book "The Late Talker". Also, adding omegas (fish oil) to our DD's juice really helped with language, it's a simple approach and one that is mentioned in the book.
I would keep an eye out and not be too dismissive of anything at this point, SPD/regulatory issues, language issues, etc are all signs of neurological difference, not necessarily bad, but something to keep an eye on. The author of the book, above, is a dev ped in NY. I have several friends who have had her evaluate their kids and they have been very happy. We are fans of the Greenspans, but no one walks away without a prescription for a lot of Floortime, kwim? |
Anonymous
I posted before and agree with this poster. Maybe if the OP could be more detailed about what else besides being 20 months old, having lots of energy and not talking as much as other children his own age. I am not sure how these "signs" point to SPD. Has an OT skilled in SPD assessed your child? What were the findings? I understand that the PP who is very knowledgeable about SPD would like to share her insight but she also needs to realize that not everyone can sign their child up for very costly doctors and services. A good speech therapist might be brought in for an evaluation and perhaps an OT. Perhaps the child has hearing loss affecting his speech? I agree that in cases of ASD, the earlier the intervention the better but jumping the gun and diagnosing other kids who may need to mature a bit isn't right or helpful. No wonder the other mom you met looked at you like you were crazy. How long had you known her child? Or did she just talk about him/her? |
Anonymous
| OP here, many thanks for the thoughtful responses. To clarify a couple of things in response to the inquiries: First, and I'm not trying to be defensive, but we are not in denial and avoiding getting our DC evaluated. We have had our DC tested by just about every specialist known to man (or woman) based on each doctor's recommendations. Not a one of them has discovered any problems, although there is some concern that DC's hearing might be being affected by ongoing congestion and fluid in the ears. Otherwise, though, the worst we've been told is that the reason DC walks and runs so awkwardly is b/c DC is knock kneed (DC's movements were reported to be one of the "symptoms" of SPD). Indeed, the pediatric orthopedist we were referred to seemed to think it was kind of silly that we got referred since this is a common problem with toddlers and one that they typically grow out of. The only other "symptom" is that DC is "busy" and always moving. Our daycare teachers, however, confirmed that DC will stand still and participate in circle time and other activities that require DC to be quiet and attentive. DC is, however, very independent, thinks it's funny to counfound people, and is of the personality type that DC does things when DC wants to. So, for example, if we are leaving and we say "DC can you say goodbye to everyone" DC will look totally blank until the door has closed, at which point DC will grin sheepishly, wave, and say "bye." At that point, though, it's too late for anyone to see or hear it. Another example, if you say "DC can you pick up the block and put it in the box," DC will look at you, grin, and start pointing at everything EXCEPT the block as if DC is unable to discern what is being asked. After we give up and move on to something else, though, DC will then walk over, pick up the block, grin, and drop it in the box. The daycare teachers constantly joke about how DC has everyone fooled into thinking DC can't understand things when in fact DC understands perfectly well. When the county evaluator came, all she saw was DC walking around. DC likes to stomp around and climb anything and everything. DC never falls down though, never bumps into things, and seems to be very aware of where DC is relative to other objects. Based purely on observation, though, the evaluator said she thought DC probably had SPD. We haven't actually had the full county developmental evaluation yet. I guess my original point was to express concern about whether SPD is being over-diagnosed. Obviously, we'll wait and see what the results are of the full evaluation. But like I said, I'm worried we're trying to "fix" some things that are more personality than a physiological problem, particularly since none of the specialists are concerned. Oh, and DC is gradually picking up more words, albeit will only use them when DC wants to. |
Anonymous
| Sounds like you have one smart little boy. Mine is too but a really good OT got him to show his real self during the evaluation. The fact that he is busy is NORMAL and cheers for a 20 month old boy being able to sit down during circle time! I don't understand what the county evaluator saw that makes her suspect SPD though. Did she explain her thinking? The fact that he is able to do things but not perform isn't unusual. When did he start walking? B/c running awkwardly sounds normal for a 20 month old. Using words when he wants to also sounds very normal for a busy toddler boy. Nothing you've described sounds like it should be cause for concern. |
Anonymous
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op--is your child a boy or a girl?
i think you've gotten some sound advice here. it doesn't sound like your child has yet been eval by an MD. if that is true, i would get an appointment with Dr. Chuck Conlon. he is a developmental ped. i think an eval by him will go a long way toward helping you figure this out. and it will be good to have a baseline in his medical record. of course, greenspan is the absolute best here. but your concerns do not yet raise the red flags that i think require an eval by someone like greendspan, given the wait time and expense. go see dr. conlon. it sounds like you have too many cooks involved at this point, if you will. in the meantime, pick some of greenspan's books. |