Sensory Processing Disorder -- long post sorry!

[Anonymous]

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.

Np here. I found this quoted poster very informative and useful, except for this one sentiment (and it's a doozy). There are many, many, many of us out here in Normal Land who cannot afford the literally tens of thousands of dollars out of pocket to pay for therapists. And in "close call" cases like the OP's, it is arguably irresponsible to, say, pull money out of a 401(k), with penalty, to pay for therapy.

It's sometimes hard to remember this, because it feels like the average HHI on DCUM is $350K. However there are a lot of people who 1. do not quality for gov't services (and I bet OPs kid wouldn't) and 2. canNOT pay for therapy.

We have a close-call child, who is now 6, and it kills me that I cannot just write a check for $150 a week to the OT, $135 a week to the speech therapist, $100 a pop for the social skills group in Kensington, $4000 to Stanley Greenspan and God knows how much for supervised floortime year after year.

Of course, if my kid was profoundly autistic, insurance might cover some of this OR we would just make the decision to raid our retirement accounts and pay for the services that the gov't doesn't cover.

But in these close cases, where you have a really typical kid who is a little bit sensory, or 5% Aspie-like, and highly functioning, I would respectfully like to suggest that it is unwise to incur massive debt or raid your entire savings to address it.

[Anonymous]

Our children are special. Wayyy too special. Why on earth would you want your child to aspire to mediocrity or being above average in life? Why wouldn't you want to give your child the best you can offer in your life so that HIS life could be the very best. Long after you are gone from this earth, he will need to manage life, which is difficult enough for neurotypical children but so much harder for kids with regulatory issues and even more hard for autistic kids. How can we feel comfortable leaving this earth unless we know we have done EVERYTHING for our child to prepare them for the best life they can have. Not getting therapy or treatment affects their relationships their marriage (if they have a successful one), their friendships, their jobs, their ability to get into a good school, their grades, everything...

You don't even need to spend much money. Its a nominal amount to buy books on RDI and Greenspan's books and do the therapy at home. Floortime is FREE. You don't need a pricey OT to do it. YOU, the parent, can do it at home. If you can't afford pricey OT, take your child to the park, play soccer with him, take him to the rec center for other physical activities. It will still be a great form of OT for him to do all these things.

We did raid our 401K for our DC, at least to some degree. Because our children's lives are worth far more than ours.

[Anonymous]

not saying goodbye on command at 20 months isn't at all uncommon...

[Anonymous]

Anonymous wrote:

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.

Np here. I found this quoted poster very informative and useful, except for this one sentiment (and it's a doozy). There are many, many, many of us out here in Normal Land who cannot afford the literally tens of thousands of dollars out of pocket to pay for therapists. And in "close call" cases like the OP's, it is arguably irresponsible to, say, pull money out of a 401(k), with penalty, to pay for therapy.

It's sometimes hard to remember this, because it feels like the average HHI on DCUM is $350K. However there are a lot of people who 1. do not quality for gov't services (and I bet OPs kid wouldn't) and 2. canNOT pay for therapy.

We have a close-call child, who is now 6, and it kills me that I cannot just write a check for $150 a week to the OT, $135 a week to the speech therapist, $100 a pop for the social skills group in Kensington, $4000 to Stanley Greenspan and God knows how much for supervised floortime year after year.

Of course, if my kid was profoundly autistic, insurance might cover some of this OR we would just make the decision to raid our retirement accounts and pay for the services that the gov't doesn't cover.

But in these close cases, where you have a really typical kid who is a little bit sensory, or 5% Aspie-like, and highly functioning, I would respectfully like to suggest that it is unwise to incur massive debt or raid your entire savings to address it.

I disagree whole-heartedly, and I do so with the perspective of both a mom and of a sibling. My older brother was what you would call "close call" and I saw how being different affected him more and more the older he got. It's hard enough to watch our kids experience difficulty fitting in or going with the flow at say 6 or 3 (like my daughter) but the cumulative effect of years of this can lead to loss of self-esteem, self-worth, ambition, etc, etc, etc. My brother never recovered from the treatment he received for being "quirky" and will never lead a productive adult life. Having lived through this once with him, the fact that we can't afford our daughter's treatments isn't a consideration. We've cashed in our 401K, delayed buying a house, and delayed having another child and I really think it's 100% worth it if you look 10 years into the future. Trust me, I've been there.

[Anonymous]

Anonymous wrote: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.

Hi, OP. I posted before and recommended the "What to Expect.." book. Anyways, I think you should just drop all the testing, I'll say that again. I'm assuming this is your first child. Toddlers that age are in their own little worlds. I think you're examining everything he does too closely. Please post and mention what you end up doing/not doing.

[Anonymous]

Anonymous wrote:

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.

Np here. I found this quoted poster very informative and useful, except for this one sentiment (and it's a doozy). There are many, many, many of us out here in Normal Land who cannot afford the literally tens of thousands of dollars out of pocket to pay for therapists. And in "close call" cases like the OP's, it is arguably irresponsible to, say, pull money out of a 401(k), with penalty, to pay for therapy.

It's sometimes hard to remember this, because it feels like the average HHI on DCUM is $350K. However there are a lot of people who 1. do not quality for gov't services (and I bet OPs kid wouldn't) and 2. canNOT pay for therapy.

We have a close-call child, who is now 6, and it kills me that I cannot just write a check for $150 a week to the OT, $135 a week to the speech therapist, $100 a pop for the social skills group in Kensington, $4000 to Stanley Greenspan and God knows how much for supervised floortime year after year.

Of course, if my kid was profoundly autistic, insurance might cover some of this OR we would just make the decision to raid our retirement accounts and pay for the services that the gov't doesn't cover.

But in these close cases, where you have a really typical kid who is a little bit sensory, or 5% Aspie-like, and highly functioning, I would respectfully like to suggest that it is unwise to incur massive debt or raid your entire savings to address it.

I agree with the PP that not everyone can or should pay out the big bucks for therapies. I believe the first quote is from the same poster who told another mother that her kid had issues. I also believe this is the same PP from a recent thread that doesn't believe social skills group are only for kids on the spectrum or whose parents can't be bothered to organize and monitor playdates. Someone on that thread also thought she recognized the poster from a stimming thread. She definitely has some strong opinions and see things in absolutes. A good parent gets therapy no matter the cost, social skills groups are only for the seriously challenged or lazy parents, her interpretation of Dr. Greenspan is the gospel and everything else is blasphemy.

My kids are special needs and I know all too well how expensive therapy is. We've been doing the therapy routine for 4 years, sometimes 5 appointments in a week. We will not raid our 501K plans nor will we re-finance the house and it's likely we're going to be dropping therapy because we can't afford it. Are we doing the best we can for our kids? Absolutely. It's critical that we maintain stability - emotional, financial and marital. We've had to make hard decisions about what we can and cannot do. I'm not going to tell my long sad tale but we each have to make the best decisions we can. It sounds like OP is on the right road and there's nothing to be gained by laying on the guilt. As she learns more about therapy and her DC, she may see there's nothing more than quirkiness she herself has. Also, every therapist we've met has been more than understanding about the financial challenges and have worked with us to develop a home plan with periodic check ins. Sometimes a duck is just a duck.

[Anonymous]

"My kids are special needs and I know all too well how expensive therapy is. We've been doing the therapy routine for 4 years, sometimes 5 appointments in a week. We will not raid our 501K plans nor will we re-finance the house and it's likely we're going to be dropping therapy because we can't afford it. Are we doing the best we can for our kids? Absolutely. It's critical that we maintain stability - emotional, financial and marital. We've had to make hard decisions about what we can and cannot do. I'm not going to tell my long sad tale but we each have to make the best decisions we can. It sounds like OP is on the right road and there's nothing to be gained by laying on the guilt. As she learns more about therapy and her DC, she may see there's nothing more than quirkiness she herself has. Also, every therapist we've met has been more than understanding about the financial challenges and have worked with us to develop a home plan with periodic check ins. Sometimes a duck is just a duck. "

NP here, and amen to this. Seriously. We're in the same boat. For two years we spent over 2K per month on therapies alone (insurance covered nothing). We raided everything, took a home equity loan, and scaled back on all savings. You know what - it was crazy. It meant we had no life, no savings, no retirement, no putting anything aside for our other child' college fund, never a dinner out, no vacations, nothing at all except our son's therapies. We have since scaled back to just 2 therapy appts/week plus our son gets services through school and we're pretty hands-on parents, and you know what - he is still making progress. As much as he would if he had 20 hrs of therapy a week? I have no idea. But enough that we think he is doing great, and we are now a saner, more balanced, more well-rounded family.

We all do what we can for our children. On this board especially, I am awed by what I read from other parents. Please - let's not pressure each other or make each other feel guilty. We all make choices for our children in ways that make sense for us at the times and in the contexts in which we live.

[Anonymous]

OP, given all you have posted and assuming you haven't left any troubling concern out, if I were you I'd stop ALL the testing and cancel all further appointments until you actually have something that you are concerned about.

Seems to me like you have a smart, slightly stubborn toddler on your hands.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

I agree with the PP that not everyone can or should pay out the big bucks for therapies. I believe the first quote is from the same poster who told another mother that her kid had issues. I also believe this is the same PP from a recent thread that doesn't believe social skills group are only for kids on the spectrum or whose parents can't be bothered to organize and monitor playdates. Someone on that thread also thought she recognized the poster from a stimming thread. She definitely has some strong opinions and see things in absolutes. A good parent gets therapy no matter the cost, social skills groups are only for the seriously challenged or lazy parents, her interpretation of Dr. Greenspan is the gospel and everything else is blasphemy.

My kids are special needs and I know all too well how expensive therapy is. We've been doing the therapy routine for 4 years, sometimes 5 appointments in a week. We will not raid our 501K plans nor will we re-finance the house and it's likely we're going to be dropping therapy because we can't afford it. Are we doing the best we can for our kids? Absolutely. It's critical that we maintain stability - emotional, financial and marital. We've had to make hard decisions about what we can and cannot do. I'm not going to tell my long sad tale but we each have to make the best decisions we can. It sounds like OP is on the right road and there's nothing to be gained by laying on the guilt. As she learns more about therapy and her DC, she may see there's nothing more than quirkiness she herself has. Also, every therapist we've met has been more than understanding about the financial challenges and have worked with us to develop a home plan with periodic check ins. Sometimes a duck is just a duck.

PP, you don't need to "out" me in your effort to make me appear less credible to the readers here. Shame on you for trying though. It detracts from the real issue which is what is really best for our kids, regardless of who posts, how it's posted, whether it's passionately or impassively stated... I have no problem admitting to being that poster. I'm proud of it. My passion on this issue of special needs kids is real and true. It's an issue close to my heart. I also see a lot of special needs children in my line of work. It pains me dearly when parents do not act to help their kids out more.

Lets NOT make this an issue of money, because it really doesn't have to be an issue of money. As I mentioned before and I'll say it again - one does not need to dish out the big bucks for a psychiatrist for therapists...books are not that expensive. Greenspan's ICDL articles are, in fact, FREE. All you need to do is google them. We started our floortime and home therapy 6 months before we ever saw any professional when DC was merely 2 years old. So doing therapy at home is the way to go if money is the issue and especially in these economically hard times. It's also the best approach because therapy with parents is the best thing for children.

[Anonymous]

Note to the particular poster who is intent on "outing" my identity. She'd probably post my name if she could too!:

I'm that poster who is always absolute!

Considering that home therapy is fun and free, I am beginning to wonder if there's some other reason why some parents are averse to doing it...other than cost. Home therapy does not reshape personality, it actually brings out a childs true personality minus the quirks in many cases.

[Anonymous]

OP, I just read your second post and see that your DC hasn't been evaluated by the county team yet--it sounds like the person who brought up SPD was the intake coordinator who does the initial assessment in your home?
Another reason not to put too much weight on the SPD diagnosis. I still think you should take a step back...continue to engage in the therapies your child needs but don't even worry about a diagnosis at this point. 20 months is just so young and you're not describing any major red flags to me--and this is coming from a parent of a child who has some developmental delays.

[Anonymous]

Anonymous wrote:Note to the particular poster who is intent on "outing" my identity. She'd probably post my name if she could too!:

I'm that poster who is always absolute!

Considering that home therapy is fun and free, I am beginning to wonder if there's some other reason why some parents are averse to doing it...other than cost. Home therapy does not reshape personality, it actually brings out a childs true personality minus the quirks in many cases.

I don't have anything to say to you but I did want to go on record that I'm not 17:46 but I am the poster from the social skills group that recognized you from the stimming thread. http://www.dcurbanmom.com/jforum/posts/list/60368.page. I, again, am sorry that your child has challenges and I congratulate you on your efforts. But, you have no idea how alienating your posts are. Someone used the term "uber-mom' in the General Parenting thread and I'm starting to think you fall in that category. You twist what other people say (who said you shouldn't do home therapy?) and are so bombastic. It's so unnecessary. I'm not feeding the troll anymore.

[Anonymous]

You actually dug up the old thread? I haven't even checked it to see if that was something I responded on. But that is really lame and says quite a bit about your intent and objective here. This has become personal for you now hasn't it?
Because you don't like my view and I speak in absolute terms I am now a TROLL also!?? God forbid people who have strong opinions on DCUM. Half of DCUM would be shut down if you rejected opinions that were strongly expressed.

[Anonymous]

Anonymous wrote:You actually dug up the old thread? I haven't even checked it to see if that was something I responded on. But that is really lame and says quite a bit about your intent and objective here. This has become personal for you now hasn't it?
Because you don't like my view and I speak in absolute terms I am now a TROLL also!?? God forbid people who have strong opinions on DCUM. Half of DCUM would be shut down if you rejected opinions that were strongly expressed.

17:46 here. I read the stimming thread and I can understand why the PP posted it and why your posts remind her of General Parenting. People are just looking for some information yet you blast people who disagree with you and hijack the threads. What are usually normal, helpful discussions have become inflammatory and disruptive. Of course, I guess everyone forum has to have one but I, too, am not feeding the troll.

[Anonymous]

NP here. I frequently post here about my two special needs kids, so I am sure by now some people know who I am Anyway, I agree with some of the others that it doesn't sound like your son has any pervasive developmental delays or other alarming signs that would indicate SPD. Nonetheless, I understand how difficult it is to make a judgement call on early intervention. I myself am a huge advocat of early intervention, but in your case, I would recommend to hold off until he is at least turning 2 years old. You say that words are emerging so it doesn't sound like he is on a stand still, which is very encouraging.

And about OT and other interventions: OT, floortime, ABA etc. are NEVER that effective if the parents don't adopt the strategies at home. My autistic 4 year old has gotten OT since he was 26 months old, and it made a ton of difference for him. But the 2 hours/week of therapy alone wouldn't have worked as well if we hadn't actually implemented many of the strategies our OP used. He is now only getting OT at school, but I still provide the sensory diet to both of my kids. It's the only way for us to actually make it through some of the daily transitions.

Unfortunately we cannot afford private OT anymore either, especially since my daughter needs it as well, but there are indeed many things I can do at home now that I learned from our great OT.

I think the bottom line is that if you suspect your child may fall a little behind on milestone or may present with mild SPD, you should take matters in your own hands and try to intervene at home first. As one of the PPs said the educational material is out there. If you suspect something like autism, however, I would ALWAYS recommend to seek professional help, because those early years are crucial to a child's prognosis.