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Lost mother hoping for guidance/advice - mamarae - 05-15-2013
Hello! My 6-year-old son may possibly have SPD. I know I will not get definitive answers here or anywhere else, but any advice or info would be very much appreciated. I'll give you a background of what has lead up to this point....
As a baby:
-He would get so upset at loud gatherings/events, that I would have to remove him from the noise and bring him somewhere quiet to calm down.
-He would drool so much that he would soak through his clothes and mine when holding him.
-He would overeat to the point of constant spit-up or vomiting.
-Chronic diarrhea (gritty/light in color/acidic-smelling)
As a toddler:
-He knew his ABC's at 18 mos., would always look for letters while out/almost obsessive about it
-He would line his cars up behind his back often
-He would organize his blocks by color
-He would get so angry at times that he would automatically pick up the closest object and throw it at me/dad/sister.
-When angry, he would also bang his head on the floor
-Only spoke 5 words at 2 years, I had to insist on speech therapy (he had therapy for a year, successful)
-At age 3, chronic diarrhea changed to chronic constipation that we are still battling. He sees a GI specialist for this ( that I also had to request referral for)
-Around 2.5-3 years started this "pill rolling" with his hands that dad and I just thought he did to stimulate himself. Sometimes when he was playing alone, other times during computer time.
-Still drooling and now sticks his tongue out to the side when playing alone or using hand motions.
As a pre-schooler:
-Pre-k teachers had concerns about his fine motor skills. This was brought up to his pediatrician.
-Every time he dressed himself, his clothes were on backwards (every item) or upside down (socks with grey heels would on top of his foot).
-Tried soccer. No focus, would do the pill rolling on the field. Happy to just kick the ball around & cheer on teammates. We did this for spring/fall season & decided not
to enroll him this spring : (
-Would get VERY angry when hungry & still does. Always seems to be hungry.
Now, we are up to kindergarten. His teacher had concerns about the hand motions and how he would "zone" out sometimes while he was doing this. She had the school psychologist come in and observe him. They then called me in. It was decided to bring this up to his pediatrician with the concern of seizure activity. We had a 1.5 hr. EEG performed that incidentally found the trait for nocturnal benign rolandic epilepsy. No cause for concern. A lot of kids have this without ever knowing & outgrow by tween years. Ok. We did get a diagnosis of ADD ( not hyperactive). Then, after Christmas break, teacher notices these "spells" are getting longer & now he is regressing in some skills. Another meeting. We now get set up for a 24-he EEG (no seizures found) & an MRI (neg). I'm just so overwhelmed at this point, but I also feel relief as the school psychologist brings up the possibility of PDD. We agreed to have an IEP set up as he qualified for services under "other medical" due to ADD dx. The IEP has been set up to where he's going to receive OT for his fine motor issues, PT for his coordination problems (i have to watch him consistently or he will walk into/off things), & 1:1 special ed help to keep him focused.
I have been a mother since the age of 18. I had 2 children before this little guy. As a mother, you know when something is not right. Upon reading up on PDD, I learned about SPD. Mind you, my son sometimes sucks/chews on his clothes. He says he does it when he's nervous. He's typically home when he does this. He also had major issues with going to school for the first 4 months. He kept saying he wanted to go back to pre-k & he hated kindergarten. Didn't make for good mornings.
Here's (finally) my question to you: There is a center here locally that i can have him evaluated at. The wait time is 6-9 months. I just read SPD is not being recognized in the new DSM-V. Does he seem like a kid with SPD? Should I push on? I feel like the only person(finally) that agrees and sees what I'm seeing is the school psychologist. Not the pediatrician and not my husband.
I'm sorry about the long post but i'm at a loss and don't know if i'm fighting an imaginary battle. I welcome any insight on this.
Thank You!
RE: Lost mother hoping for guidance/advice - LAC1961 - 05-15-2013
Welcome. Some of your son's symptoms sound like SPD, but not all of them. Have you ever done an SPD checklist? It may be worthwhile to do one to put your own mind at ease. You're right that it is not an approved diagnosis, but some of the symptoms of SPD are diagnoses in and of themselves (see my daughter's diagnosis below). Perhaps it would be a good idea to have him evaluated by a developmental pediatrician, who would be able to identify symptoms that may indicate a diagnosis other than SPD or in addition to SPD. Here's a link to the symptom checklist on this site: http://spdsupport.org/resources/symptoms.shtml
It isn't unusual for kids with SPD to have other diagnoses. My 5 y.o. daughter has an SPD diagnosis of dyspraxia. She also has ADD and speech apraxia. All these diagnoses are related to her neurological system. She was also tested for some genetic disorders than can produce similar symptoms as SPD, but they were negative. A developmental ped could determine if he's a candidate for genetic or other testing.
There are lots of things that could cause the chronic diarrhea. A friend I met online has a son with this problem, and he has fructose malabsorption. Others I know are gluten intolerant or dairy intolerant. The diarrhea problem should likely be evaluated by a gastroenterologist.
I know this can be overwhelming, but you will find a lot of support and encouragement here. Keep at it.
RE: Lost mother hoping for guidance/advice - heather40 - 05-16-2013
Good for you! You are on the right track! group sports, I say fergitaboutit! lol Not going to happen! lol Push, and push! Is there anywhere else yo ucan go for OT eval? In the meantime treat him as though it is SPD, start the sensory diet, look that up and gear yourself towards that. Pediatricians do not know much, believe me! that is not their thing. If you are worried about fine motor, start with tings like picking up toys with large tweezers, playdough, wringing out dishrags, tearing paper, cutting, things to build up the hand muscles. These are things you can incorporate at home. It will also be a mindless activity that will help to calm him.
My son has banged his head on things a few times and that was just when he was SO frustrated he could not take it anymore. I have gotten that to stop by getting him on a sensory diet. My son used to line up his cars over and over again because they were never perfect to him. The OT made me stop him from doing that immediately! Not by taking them away but showing him how to "play" with them. You will find that each year going into a different classroom there will be challenges. They like structure and things to be the same, well now here we are in a new room, new kids, and a new routine. What I do every year is take my son to school before school starts. We meet the teacher, he sees the room, he gets to pick his desk ( which is usually by the door so he is not stuck in the middle of the mix of stimulation) . Routine is so very important to their exsistance, I have to discuss everything that will happen before it does, I have to give a 5 minute warning before something will end because he CANNOT transition very well. The teacher does it too. I do let him know that sometimes things happen when we don't want them to that is life. Things cannot always be planned out. SPD is not I the DSM-IV , but if you have speech therapy it can be placed under that "umbrella" that is what they did for my son. Never stop being an advocate for your child. If you can volunteer at school and get known, the principal at my son's school has done more for him then the Special Ed department. NEVER allow them to say he is a behavorial problem, he has a problem that causes his behaviors. They can make accomidations for him. Start working on tings that you see, look them up, find out what is setting him off to hit his head or throw stuff and teach a coping skill. You can do this. Then when you get him evaluated you will have a better idea as to what to do and what resources to look into. In the meantime treat it as though it is SPD, is what I say, what will it hurt?
RE: Lost mother hoping for guidance/advice - Amyc03 - 05-16-2013
My son has many of the same challenges. Anywhere that has large crowds can be a challenge. Whenever we go to the store I put him in the cart for a little while to let him adjust. Whenever he is deeply focused he chews on his shirt(not even realizing he is). Adjusting to school was huge. We realized that in K there is sooo much activity in the classroom that he couldn't handle it. He was put in a desk near the class, but in his own space. This helped. During recess he would be settled in a place to play and could move onto the playground when he chose. He began speech therapy and behavioral IEP. This has also helped. He can communicate where more people can understand him. In first grade it was an adjustment period. The teacher set up a quiet spot where he could go at any time he felt a meltdown coming on. There are also other teachers who will allow him to come to their class to keep routine( substitutes there or drastic change in routine). It helps a lot to have a relationship with your child's teacher and others that are in contact with your child. It makes a huge difference. I have found a natural supplement called Focus for kids that helps him. He tells me it feels like it helps with his control. He has violent meltdowns with yelling and stopping and throwing. During these times I make sure not to yell. I give him a few minutes so that he will hear me, then tell him to go to his room in his cocoon. This is a blanket that he wraps himself in to block all stimuli from him. After a little while he will ask me for a very tight hug which he says helps him calm down. It's not always that simple and at times I have had him go in and out of a meltdown. I always remind myself that he is not a bad child, but a very unique special gift. That he is my constant challenge to be a better mom and person. I am constantly learning with him. I wish you well in your adventure and discovery. Pre plan all things you can. And communicate with him.
RE: Lost mother hoping for guidance/advice - Tuttleturtle - 05-16-2013
How are his people skills?
I know they mentioned PDD to you as a place to look and that lead to you SPD, but really, reading that list of traits, it really said to me to look into the social part of it, because that list of traits looks closer to what I'd expect from someone with an ASD than someone with SPD.
SPD is a possibility, but from what I've read SPD doesn't look quite the same as ASDs without the social parts mentioned and that looks more like the ASD without the social parts mentioned to me.
An OT evaluation would probably be a good idea, but I'd want an evaluation for an ASD first personally if he's not normal developmentally on the social parts.
RE: Lost mother hoping for guidance/advice - mamarae - 05-17-2013
(05-16-2013, 04:24 PM)Tuttleturtle Wrote: How are his people skills?
I know they mentioned PDD to you as a place to look and that lead to you SPD, but really, reading that list of traits, it really said to me to look into the social part of it, because that list of traits looks closer to what I'd expect from someone with an ASD than someone with SPD.
SPD is a possibility, but from what I've read SPD doesn't look quite the same as ASDs without the social parts mentioned and that looks more like the ASD without the social parts mentioned to me.
An OT evaluation would probably be a good idea, but I'd want an evaluation for an ASD first personally if he's not normal developmentally on the social parts.
His social skills are actually very good. He has an easy time making friends. That's why I'm reallly thinking it's more (if anything) SPD. He does go to play therapy (we pay out of pocket for an intern) and she has mentioned she noticed some sensory issues. She was going to videotape him yesterday, but couldn't get the camera to work. So, I'm hoping she and her supervisor will make observations that could be helpful. Thank you for your advice, I really appreciate it : )
(05-16-2013, 03:54 PM)Amyc03 Wrote: My son has many of the same challenges. Anywhere that has large crowds can be a challenge. Whenever we go to the store I put him in the cart for a little while to let him adjust. Whenever he is deeply focused he chews on his shirt(not even realizing he is). Adjusting to school was huge. We realized that in K there is sooo much activity in the classroom that he couldn't handle it. He was put in a desk near the class, but in his own space. This helped. During recess he would be settled in a place to play and could move onto the playground when he chose. He began speech therapy and behavioral IEP. This has also helped. He can communicate where more people can understand him. In first grade it was an adjustment period. The teacher set up a quiet spot where he could go at any time he felt a meltdown coming on. There are also other teachers who will allow him to come to their class to keep routine( substitutes there or drastic change in routine). It helps a lot to have a relationship with your child's teacher and others that are in contact with your child. It makes a huge difference. I have found a natural supplement called Focus for kids that helps him. He tells me it feels like it helps with his control. He has violent meltdowns with yelling and stopping and throwing. During these times I make sure not to yell. I give him a few minutes so that he will hear me, then tell him to go to his room in his cocoon. This is a blanket that he wraps himself in to block all stimuli from him. After a little while he will ask me for a very tight hug which he says helps him calm down. It's not always that simple and at times I have had him go in and out of a meltdown. I always remind myself that he is not a bad child, but a very unique special gift. That he is my constant challenge to be a better mom and person. I am constantly learning with him. I wish you well in your adventure and discovery. Pre plan all things you can. And communicate with him.We have been trying to be more patient as we are becoming more aware of how different he is than other kids. We also are trying not to "feed into" his meltdowns. That's my biggest challenge with him right now. You offered some great tips already. I'm going to try some things you've mentioned doing with your child. I will definitely check out the Focus supplement. I can tell you that his Kindergarten teacher is soooo amazing. She's young, a new teacher, but she really cares about her students and has been so patient with us and our son's situation. Thank you for your help. I feel so much better getting this advice from other parents who really understand what I'm talking about.
(05-15-2013, 10:15 PM)LAC1961 Wrote: Welcome. Some of your son's symptoms sound like SPD, but not all of them. Have you ever done an SPD checklist? It may be worthwhile to do one to put your own mind at ease. You're right that it is not an approved diagnosis, but some of the symptoms of SPD are diagnoses in and of themselves (see my daughter's diagnosis below). Perhaps it would be a good idea to have him evaluated by a developmental pediatrician, who would be able to identify symptoms that may indicate a diagnosis other than SPD or in addition to SPD. Here's a link to the symptom checklist on this site: http://spdsupport.org/resources/symptoms.shtmlThank you! We have tried going GF and dairy free for a while with him with no success. I've never heard of the fructose malasorption and he LOVES fruit. We'll have to read up on that. I have checked out the SPD checklist and he has alot of the symptoms, but not all.
It isn't unusual for kids with SPD to have other diagnoses. My 5 y.o. daughter has an SPD diagnosis of dyspraxia. She also has ADD and speech apraxia. All these diagnoses are related to her neurological system. She was also tested for some genetic disorders than can produce similar symptoms as SPD, but they were negative. A developmental ped could determine if he's a candidate for genetic or other testing.
There are lots of things that could cause the chronic diarrhea. A friend I met online has a son with this problem, and he has fructose malabsorption. Others I know are gluten intolerant or dairy intolerant. The diarrhea problem should likely be evaluated by a gastroenterologist.
I know this can be overwhelming, but you will find a lot of support and encouragement here. Keep at it.