How do you decide to push for more diagnosis? That is the question I face tonight. My 7 year old has been diagnosed with SPD ( 2 1/2 years ago) and has had OT and is doing way better than I ever thought he would. He attends a parochial school because we want him to have a Christian Education and it’s a smaller K-8 school, which is getting harder to find. He was evaluated at age 4 by the local public schools where we were basically told “we can’t help you”. Yes, that is what we were told.
He has a motor delay but not severe enough to get him an IEP. So with the help of some great friends we got him into private therapy which we now pay out of pocket for. I used to teach at the school my son attends and have an “in” with all of the teachers, or I like to think I do. His birthday was 6 weeks before the cut-off and is now the second oldest in his class. He is an awesome reader, and catches onto math like no ones business. I have worked with him at great length on social cues and what is and is not acceptable as he doesn’t seem to learn this through osmosis. However, he does great with these skills once they are taught.
This post really has nothing to do with his school. It has everything to do with him still being odd; different; and whatever other word you want to use. He is socially immature for his age, but does okay, for now….the thought of him being picked on or bullied scares me. It’s about him STILL having toileting issues…tonight he pooped in his underwear, second time since Friday. He won’t poop away from home, and we were visiting family this weekend. We use fiber powder and Miralax to keep him going on a regular basis.
And again this post isn’t only about our bathroom issues. This post is about when do you decide to peruse another diagnosis? When do you realize that this isn’t all of the pieces to this puzzle? I have a good friend who is a pediatric nurse practitioner who worked for a child psych doctor a few years ago. And she and I have discussed it and we are both pretty sure he is actually a high functioning autistic. My dilemma is in having the diagnosis there, forever…so to speak…. What does this mean for him in college or getting a job? I am not a big fan of our pediatrician, but with medicaid I am not sure I would encounter a different mindset many other places. They are always amazed at how healthy my kids are; yes, I am college educated and with an Early Childhood degree, I know to feed them good food and make them wash their hands.
Do I go through him? Do I try the local school again? What are they actually going to do for him? He does well in the school he is in, my husband and I really aren’t looking to change that.
I just get this feeling that SPD is only the tip of this iceberg….and just when we thought we had it all mapped out, we are beginning to discover there is a lot more beneath the water. Advice is totally welcome here!
Comments
Rachel
This is alot like our story. It took 5 years of fighting to get an initial dx. The dev. ped. said SPD, but that didn’t feel complete, so I fought more. We ended up moving states, and the school in our new state didn’t/wouldn’t accept SPD for his IEP and had their psychologist test him. He came back with Aspergers and recommended an outside eval. We went forward with the recommendation, and again the psychologist determined Aspergers. With this dx I feel relieved and like we’ve now got answers.
I always say if it doesn’t feel right keep following that instinct, something will fit. We know our kids better than anyone!
Cande
We are going through the same thing. My dd is 7, and her psychiatrist thinks she may have PDD, but admits she doesn’t get to spend enough time with her. I think dd was almost 5 when dx with SPD. Are pediatrian agreed to getting another eval and told us to find a developmental pedi, but the closest one (not much to choose from on Medicaid and we live in dfw) is over 70 miles one way. So we went with the first person to call us back, a psychotherapist. But not sure if she has studied high functioning autism much. The new social worker at psyc office said I should still get her into a place that specializes in it. So I called one, got no answer and waiting to her back. I know I will probably have to harasse them to just get an appt. and then wait 6 mo to a yr for the appt. if you don’t spend a lot of time with dd she seems “normal” but she does all the little things that are odd or developmentally behind for her age… It is so frusterating. I have been fighting for her since she was born… Dr and nurses “oh she’s fine, totally normal for that to happen… All kids do (fill in the blank) at diff stages”… Ugh!
Lelah
The developmental pedi here won’t talk to the parents without a pedi having first referred them. We had to switch Dr to get a referral because the first just kept telling me that he wanted to wait and see because of other things. #3 was a premature, so a lot of his issues could have been from that (but so was #2). After the pedi referral, I received a bunch of paperwork to see if they’d put #3 on the waitlist. They did and the preliminary testing began. It was over a year and we are just finishing evaluations now–two years later. This is not a quick process.
Molly
It still might just be the SPD. Has anyone talked to you about the interoceptive sense? It’s the body’s ability to recognize what the brain is telling other parts of the body. Recognizing the “need to go” is part of that. I have a friend with an 8 year old still in that same boat as you. This SPD stuff is so tricky!!
I understand what you are saying on looking for a diagnosis and knowing when you feel like the puzzle pieces have fallen together…if it doesn’t feel like you have gotten to that point, keep going. These are our kids and we have to be their champions.
Lisa
Our 2nd born had a SPD dx first, followed by an autism dx almost 3 yrs later. My oldest was dx with sensory issues in 2010, and we just finished an eval with our pediatric neuropsych because we feel more is going on there. As hard as a dx can be to hear,it can help in many ways…hang in there and good luck!
Jennifer
Our Psych put it pretty simply… when do you seek DX? When you can gain services or understanding. Don’t label to label, but instead it needs to be meaningful and beneficial. Our daughter was labeled with SPD, motor delay disorder, and anxiety. We finally received a diagnosis of Asperger Syndrome, which encapsulates all the other symptoms. THe issue is due to all the awesome and thorough early intervention and a small bit of medication, she no longer “appears” to be an Aspie. Sometimes it’s hard for others to understand the amount of hard work that goes on to keep that going. Hope our story helps you in some way!
Heather Finnegan
He was originally diagnosed with Sensory Defensive Disorder by his first OT, so it’s possible that this is still just working through the SPD. He didn’t potty train until 4, and didn’t start having BMs in the toilet until age 5. Some things I noticed as he grew were, late-end-of-normal speech. Talking more with the TV than people. Not clapping. Not doing “joint attention” as a toddler. He spoke mostly in quotes and phrases from TV. He played with his Thomas trains the right way, but they HAD to be in a certain order, and he was OBSESSED with them. He can branch out now, but can still get fixated one one thing at a time. With 2 1/2 years of OT (with a 4 month hiatus when my husband lost his job) he is a much different child.
Yes, I am aware of interoception. I pretty much devoted the first year after his dx to learning all I could about SPD, I read at least 7 books, and spent likely 100s of hours looking things up. I actually have a presentation that I will be giving for the 2nd year in a row at the Early Childhood Conference at Concordia University Chicago in 11 days (oh I had better review my presentation and get my handout ready).
Even with all of that knowledge, I still don’t know for sure. My son has a doctor’s appointment next Monday for the BM problem and I plan to ask about perusing an Autism dx. We’ll see what he says about it and go from there.
Thank you all for your stories and advice. They are much appreciated!
Tricia Callahan
There was an interesting article posted awhile ago that perhaps, SPD is the tip of the iceberg that the other diagnosis then branch off of. Perhaps that is what is going on, although as another person noted, I would look at the introceptive sense and see if there is any sensory issues going on with the potty issue.
here is a link to the article:
http://www.boston.com/lifestyle/health/childinmind/2012/05/could_sensory_integration_diso.html
joyce
HI Heather
I dont know too much about miralax but at a quick look is it like our laxative here that my foster boy was on (tube fed formula with very little fibre and so constipated because of that). I found that that laxative made him loose his bowel control. He is now eating and so has flax every morning and that is enough to get him under control. Not wanting to butt in, and I dont know your child, but just wanted to share.
All the best
Joyce
Bek
Hi Heather!
Your questions mirror my own. At this point ds has the SPD dx and an assurance from the school system psychologist that “much to my relief as I hate to give bad news to parents,he is the most decidedly not autistic child we have ever had the pleasure of testing.” All the things she pointed out as a means of determining he was not as Aspie were things we have been teaching him how to do since infancy (like pretend, joint attention, looking us in the eyes, self-regulation). I too have a background in Early Childhood (Ph.D) and have lived in the books for the last 3 years. I attended an autism conference and gleaned the following useful info:
Some researchers are beginning to describe a “broader pheno-type” of problems that are not severe enough to be labeled autism but that clearly the child is not “typical” either. These include sensory differences, hyperactivity, etc. I wonder if we are not seeing more kids in this gap area (the broader phenotype) and if our kids are not some of these kids. Husband and I are treating our son “as if” he has HFA/AS. For instance, our son processes jokes cognitively and doesn’t get them so we are teaching him about jokes and idioms. In the end, I think it is what we give to our children that prepares them best to deal with life outside the home. Oh! And BTW, about 1/3 of individuals on the autism spectrum go to college and live fulfilled lives. And I am constantly told that no one is required to reveal that they are on the spectrum unless they are seeking accommodations.
Heather Finnegan
Thanks Bek, I wonder that too. I think at age 2 or 3, he might have qualified for an Autism dx, but now we have “taught” him enough that when I look at the current qualifications he doesn’t qualify. He was evaluated by the public schools at age 4 and we were told his delay wasn’t significant enough to qualify for an IEP, he could go to the “high risk” class, but that had almost a 1 year wait. This was in Feb before he was able to enter Kindergarten. We did 2 years of Kindergarten (he made the cutoff by 6 weeks) and now at age 7 is preparing for 1st grade.
beans_mom_1
Bek,
I wonder this as well. We definitely have sensory issues here as well as hyperactivity as well as other things, but we are finally in the process of getting his sensory issues looked at more than just the “school” ones like fine motor. Even though some things are better than before, it’s the onslaught of the days where things are just “not right” where he will meltdown over us not knowing what he is saying or when he cannot do something the same way he did the last time. He has a great memory, but it’s like some of these things are just being dismissed?
The “broader phenotype” is interesting. He is social and his eye contact is better than before. Whenever he is tired or stressed, he starts to repeat everything people are saying around him and he will have these long dialogues with himself (but he says he’s talking to us) and go on tangents about experiences he’s had, but it will almost always off topic. Not in a “spacey” way, but more of a “oh, i forgot to stop talking about what was in my head” kind of conversation.
Genevieve
Your son sounds very much like my son. He has been developmentally delayed since birth. I talked to different doctors but got no where until he started preschool at age 3. They recommended we start the rounds of geneticists, neurologists, psychologist, etc. It was overwhelming. After being seen by Knights of Columbus and they saying “Um, he meets a lot of the diagnosis of autism, but he looked at the blue balloon and congratulated himself so he can’t have autism” we went for a second opinion. The neurologist looked at the tests and said that he did meet a lot of the criteria for Pervasive Developmental Disorder – Not otherwise specified. He went ahead and gave us the diagnosis, not to put a label on our son, but to give him the chance for services! He also has SPD as part of his PDD-NOS, as well as receptive/expressive language disorder. He tested to high for an IEP using his PDD-NOS diagnosis, but had recently been diagnosed with ADHD – where all of a sudden he now gets an IEP (Because SPD doesn’t work for IEP either). It has been a tough road, but he is finally getting the help he needs and one of the great things about a diagnosis – it doesn’t have to follow them their entire life. If he gets early intervention the world really becomes his oyster!
Carrie
Wow, I’m exactly in your shoes! It’s nice to know I’m not the only one. My son is 6, has a diagnosis of SPD, Tourette Syndrome, ADHD, speech and processing issues, and anxiety. My older twin boys have this same diagnosis, along with Bipolar Disorder. For years, I’ve been doing everything I can for my 6 yr old, trying to stay away from meds and help him in other ways. Therapies, diet, you name it, we’ve tried it. Things just keep getting worse. So today I’m meeting with the counselor who knows our family and sees my older boys, and tomorrow I’m taking my 6 yr old to the psychiatrist. I know he has a mood disorder too, it’s just so hard to decide whether/when to push for that diagnosis. With all my boys, it’s gotten to the point where it’s really difficult to deal with their behaviors, and everything I’ve tried aside from meds isn’t working, and it’s impacting their lives in a negative way. That’s when I know it’s time to get a diagnosis and some help. In my experience, my kids’ diagnoses have only helped them, never hurt them. It’s hard as the parent to know that your child’s future, and diagnosis, rests largely on you. I think you have to look at all the issues, and just listen to your Mama Heart, and know that whatever you do it will help your child. You would never hurt him intentionally, so whatever you do will help him become the amazing person he is destined to be in the future. You’re a great mom for pondering all these questions and concerns! You have to trust that you’ll do the best thing for your son.
Susan S.
Lots of good advice here. Just a note that we had to get my son a 504 plan based on his diagnosis of SPD. This gave him accommodations in the classroom of having more time to take tests, sitting on a therapy ball instead of a chair, being able to use a fidget, and the like. After 3 years of very difficult times in school, my son finally qualified for an IEP recently.
If you feel there is more going on with your child, where he might benefit from further diagnosis, keep going in that direction. It has taken me years, but I now feel like we just now fully understand what is going on with our son, after getting an evaluation from a neuropsychologist for dyslexia and ADHD. Good luck, push on, and keep listening to your mommy intuition!
Lelah
I knew something was different, really different, since #3 was 6 months old. I accepted what I was told until #3 was 3 years old and then I put my foot down. I knew there was more. And I wasn’t willing to overlook it. Every day that passed was a day lost at early intervention. Every day that passed was a day that, while we worked on symptoms on our own, was a day lost working on the problem. I, too, was told there was no help for my son through the school district–he just too darn smart and passed on the other issues (although barely). I looked at the girl and said, “Seriously?” in such a way she took me to the side and told me that off the record, we both know something is off. That we won’t be able to perform in kindergarten and then they will be unable to deny him help. She told me to find a good, private preschool with a developmental program and get him in in the mean time. And she was right. The school asked to do a full AU evaluation by the end of the first week of school of kindergarten. His IEP was finally in place by January, although we tweak it all the time. Until we get it right.
You keep pushing until the puzzle is solved. You keep treating symptoms and looking for a cause. You keep working on the cause the rest of your life. Because that is your job as a parent–to make sure your children have the best possible chances or being a responsible, independent, well-adjusted adult as possible. That is the job of all parents.
It does not matter if you have a label. Or what it is. #3 started with SPD and has added HFA. It matters that your child gets the help he/she needs to be who he/she needs to be in life. We embrace our label. I don’t care. It’s not shameful to be autistic. My son is not defective, he’s different. And the more we know, the more others around us can know, and understand, and accept. It’s the same as being tall, having brown eyes, curly hair, olive skin, blonde, funny, etc. It’s just a piece of him. It does not define him.
My brother is on the spectrum. He went to a top college. Has a very good job. Has lived independently. A good friend of #1 has a father who is on the spectrum. Went to college. Has a job. Got married and had his own children (obviously). The label does not hinder you. It helps you get what you need. Know what you need.
Lelah
I should add, that while it is scary, it’s the best thing you can do for your child. And if you didn’t know that, you wouldn’t be where you are. You are a good parent. Your just scared to take the next step. We are all there at one time or another.
Heather Finnegan
Lelah, that is what I was wondering if it had to be reported. And I don’t mean to say that people with ASD are in any way less. I truly believe, as you do that it’s the same as needing glasses or braces. We all need different things. However, there are those who still don’t get it…who judge…who are ignorant. And while I know, those types of people will be there, and even there are teachers who are ignorant, those are the people that scare me as far as my son having a label.
Though, truth be told, it’s a pretty sad measure of my faith in God, to worry about it. If he has ASD then God will watch over him, and denying it isn’t going to keep people from judging…
Heather Finnegan
And a part of it too, with each diagnosis there is a bit of mourning going on. Not that you love your child less or that he or she is less, but they aren’t going to be who you imagined them to be.
Forgotten
Heather, I bet if you asked your parents if you turned out exactly as they imagined, they’d say no. But I bet they’d also say you turned out better than they ever could have imagined. Don’t fret over that lost child you thought you were having, he was only a dream. The real one is much better.
Heather Finnegan
Very true
Jenny from the Block
Just wanted to offer hugs and support. I was out of state when thus posted. That is a tough call. Like the one poster said, it is going to change meaning and services, go for it. I would also add that if it gives you some sort of peace of mind,also pursue it. He is still going to be your sweet boy (I do not live with him of course and see what you see, but he has always been so sweet and kind to Belle!), but perhaps you will delve into new ways to support him. Hugs and prayers!
Heather Finnegan
Thanks! He has a pretty kind heart for others…which has be question it a bit….maybe not ASD, PDD-NOS? I don’t know. For now we are getting nothing as the ped, kinda brushed me off. Whatever. I know how to work with him and the teachers at his school are SUPER awesome in working with us! I am so excited about this school year for him!
Jenny from the Block
Oh, and I second that it MIGHT be worth exploring the flax and a break from Miralax to see if it could make any difference. I say Might because only you truly know of course. Belle was on Miralax for a while, and after a while it seemed to make things worse for her. She is pretty regular now with no supplements, though I do sprinkle flax in her food a few times a week and avoid too much dairy.
Good luck with your presentation! Or did you already have it? You are awesome!
Heather Finnegan
I did the presentation last week
Had 100 teachers come 
It was awesome! I love doing it!
Heather Finnegan
UPDATE:: The pediatrician blew me off about the ASD, saying we don’t need to label for the sake of labeling. I still don’t know that it’s just SPD, but we will move along as usual. My son’s school is awesome right now and are so willing to work with us!
He had an AWESOME first day of 1st grade. We got to see a pediatric GI specialist about the BM issue. We did a “cleanse” on Wed, and are upping the Miralax for the next 9-12 months…the pediatric GI was not good with kids (how can you want to be a pediatric GI specialist and not be good with kids is beyond me?). Hopefully, we can “fix” that problem. Only time will tell, as it does with everything.
EHCMom
My daughter recently had her annual evaluation at the children’s hospital in our state for a mild cleft palate. This involves her seeing seven doctors from different fields, such as dentist, speech pathologist, developmental pediatrician, etc. I told the developmental ped that she was recently diagnosed with SPD, and she made a note on the chart, smiled and left. The last doctor was the speech pathologist, who asked me if I thought she should see any of the other doctors. I asked if she should see a neurologist in light of her recent SPD diagnosis. She responded that I would likely not get a very positive response from a neurologist. But, she said after age six it would benefit her greatly to be evaluated by a neuropsychologist. Perhaps this would be a good next step for your child. I don’t know anything about neuropsychologists, but I got the impression from this doctor that she was hinting that after age six, it would be something that would help my daughter maneuver the system.