Feedback Please Does My Son Have SPD?

C.,
I know how all consuming this must be for you, I went through this also. In my humble opinion, it sounds like there may be some SPD characteristics going on. My daughter was evaluated through a private pediatric practice w/sensory issues & lateral lisp. Through awesome therapy & home "sensory diet" activities, she's so much better. Once in a while, she needs a little tweaking but it's no longer a big deal. Swimming and other prescribed activities help calm-focus and regulate the body.
Just to let you know though, I did all of this research and requested the evaluation. My pediatrician was not helpful in this area at all. Good luck with whatever you decide.

C.,

I just joined this group today and found your post by chance.

Where do I start........you are right on in you're discovery! Pat your self on the back for this. My son is almost 9. This WAS HIM AT 3.I could have written what you wrote (and probably did on some other site looking for the same help you are) We took him to CDS they said he was gifted. Nothing with our Ped at the time. he also said giftend and to go to the internet ( I had already spent endless hours there) I spent the almost the next 3 years researching everything. I finally found Pediatric Development Specialist-now in Portland owned by Kim Wing. Kim is an OT and she herself has SPD, as does her adult daughter. I had my son evaluated at 5 1/ 2 and again last year at almost 8. I'm just a mom who has been dug into this since my son's birth (I knew the moment he was born he was different) but....from my experience with my son and all the research I've done I would say hands down your son has tactile hypo-sensitivity, meaning he is under responsive. It is described as feeling like having gloves on. That is why he touches everything, he is not getting the input he needs. That is another reason why he seems to have no boundaries. Children with tactile issues need constant limit setting as they can not set their own limits as they don't know where things begin and end.

I could write for HOURS on this. I want to offer you as much support as I can. I was so so so alone in this process. It can be a lonely place to be but you are not alone. Almost 9 years later we still feel alone in this and it's a topic and language that Dr's and people are now aware of. It wasn't easy to find info on 9 yrs ago.

My son has been involved in Waldorf Eduction since 2.5 yrs. of age. I strongly recommend it for the early years as the preschool/K program works directly with the senses to integrate them in a very whole body way. We have done a lot with our son but have never had OT as it was never as whole body as we feel it needs to be. We actually found the therapy appointments to overstimulate him even more!

Oh, also something I've been meaning to look into is actually a parent at our school who is an OT and just had advanced training related to the whole body approach. She is right in Freeport. If you want I can also give you her name and number as I have friends who have used her and love her.

Here is what I would recommend. I hope you have an amazing Pediatrician. We see Dr. Jeffery Peterson at Intermed in Yarmouth. He is wonderful.Don't let your Dr. tell you your son has ADHD. Our ped said that literally only 3% of kids really have it that he could give drugs to our son and he would improve but it would help anyone focus. SDP symptoms cross over to many many areas and is OFTEN misdiagnosed.

I would call Kim Wing at Pediatric Development Center check out their web site; http://www.pediatricdevelopmentcenter.com/Therapists.asp

Our son saw Kim twice last year she came to our house for the follow up meeting after his test as we had just had a baby. She also came to his school and talked with his teacher. Granted we paid for all this but it was very helpful. The only thing I would say about her is that she is EXCELLENT in testing but in open conversation she often, in our opinion, spends too much time relating everything back to her family. This bothered my husband who felt he was paying to hear about his son's evaluation and not her how SPD effected her family. I liked how Kim related it to practical family life because it does have a HUGE impact on the emotional health of your family and I needed my husband to hear that we're not going crazy.

If you do end up getting Occupational Therapy for your son make sure you get therapy from and OT who has been trained in sensory integration-NOT ALL OF THEM HAVE!

This is a great web site I found it very helpful.Written by a mom who is also an OT with a severely SP dysfunctional daughter: http://www.sensory-processing-disorder.com

Feed your son well, make sure he gets his sleep. Kids like this get overtired very easily. Manage to your best ability his input(meaning overstimulating venues). We found that the more time outside the better. Is there much in nature that can't be explored!??It's perfect for tactile input. Let him touch touch touch touch. Hot rags, ice, snow, sand, stones, branches, clay. TOUCH TOUCH TOUCH. Give him deep pressure hand massages every night.

Most importantly take care of YOU! I want to offer you hope, but I want to be clear that raising a child of this nature is very very challenging. My son is AMAZING-so beautiful, musical, reading at 3, super creative.....but so so challenging. Even tonight getting him to bed was a nightmare. Almost every moment of every day is difficult for him. Meaning everything is an irritant of some nature and when he's tired his behavior is off the charts. I've read a million books seen a tons of Dr.'s and alternative care providers. It is an ongoing process.Just today we started with a DO getting cranial sacral manipulation. The Dr. will call me tomorrow to tell me what she found. It should be interesting. She briefly said I know exactly what's going on but I don't know how much I'll be able to help-- It's ongoing. Just remember to trust your gut. I loved how you said "Again, we don't really think he is playing dumb and he knows the rules but it was as if he just couldn't help it."

You're right. And remember he's only 3 he's really still so so so little. One of our mistakes was treating our very verbal seemingly mature intellectually son at 3 like he was 6. Even now at almost 9 he still believes in Santa, the tooth fairy and takes his stuffed animal to bed. Let your little one be little. It takes until a child is almost 5 or 6 to really understand their actions. Young children under 7 are all about integrating their body in movement.

We'll I apologize for writing so much.I'm very passionate about my son's challenges and want (like all mom's) a healthy life for him where he can feel good about being in his own skin.

I wish you all the luck a mom could wish, your son is blessed to have YOU as his mom.
Warmly, C.

Hi C.,
Wow, you have your hands full with this active and not-easily settled cutie. I think you are doing a good job of listing specific difficulties he is having, which you should bring to the doctor's.
I suggest that you request a full evaluation through your public school system (free of charge). This way you will have a comprehensive evaluation of all his strengths and needs. If he is receiving speech through the school system he may have already have had an eval, but I am suggesting a full evaluation. While I know you are looking for an "answer", in my experience, the best answer is not a diagnosis, but rather an evalution of needed services. The reason I say this is that children this young change quickly, and what presents as a sensory issue now, may present as a language or learning disabily later (or not). The key is keeping evaluations and services current with his developing skills and needs. Also, you will be able to work with the system on ways to coordinate your routines at home with things that work for other young children they have serviced. So, please talk to your pediatrician and your school system. Please write to me if you need follow-up suggestions.

Hi C.,

I think it is worth having your son evalated for SPD. His behavior does sound like there might be something going on other than a mischievous high-energy kid. It would be best to figure out if he does have SPD, ADHD, both or something else sooner rather than later. The earlier he gets intervention the better. Otherwise, kids will avoid him, teachers may misunderstand him and his self-esteem will suffer. My 12 year old daughter received occupation therapy for SPD when she was in 2nd grade. Since then she has been diagnosed with ADD. My pediatrician was not at all informed about SPD and unfortunately it was up to me to figure it out. I ended up having her evaluated at Occupational Therapy Associates in Watertown, MA. They did a comprehensive evaluation and follow up therapy.I also had her tested through the school system but the OT she received was inadequate. If that location is not convenient it would be worth calling them and asking if they know about an OT in your area. Also, you could check resources at www.spdfoundation.net. Her ADD was diagnosed via a neuropsych test by a local practitioner. Children's Hospital may be helpful as well. Good luck.

Hi C., I don't have any answers for you but am very interested in what ever you find out. I do daycare and have a three year old that I care for who you have described to a T except that he does not have accidents in his pants. I was leaning towards ADHD but he loves to do crafts and projects but has every other symptom you described. Good luck. Oh and thank you for being one of the few parents who listens to your care givers and takes action about your childs behavior.

B. G.

Hi C.- First, as a former preschool teacher/director and Mom of 2, I think the bathroom issue is separate from his other issues. That being said, my son at that age was highly impulsive, doing things without thinking of consequences, couldn't sit still EVER, would be put in time-out and not realize what he did wrong, would hurt friends but feel bad afterwards...couldn't really explain or understand why he did those things. I went to Yale Child Study Clinic and went through Behavioral Studies with him for behavior modification for 6 months before they realized this wasn't a choice he was making, he was highly impulsive. He finally got diagnosed at Yale as being ADHD (not surprising to me since his father also has it). He might be too young to be diagnosed but my son was at 4, and after some trials and patience, he got on medication at 5 and gradually became the child I knew he always was inside. Once he had that "stop and think" button, everything improved behaviorally (we worked on one behavior at a time to break habits) and academically. His self-esteem bounced back (no more time-outs for "bad" behavior). Now he is 12 and doing great in school and socially. It was a hard road but keep searching for answers. There is no magic pill but with the right meds and help, we got everything under control and he was happier for it! Best of luck.

I am NOT a doctor and am not qualified to diagnosis anything but with that said I am a teacher and a mother and this sounds to me like he has sensory intergration issues. This is very common and really easy to work with. Most often the treatment is occupational therapy and finding ways to help your son become more aware of his body in its surroundings. Talk to your doctor or have an elvaluation done by an occupational therapist who work with children and sensory intergration issues (SI).
Good Luck!

Hi C.
Wow- does that sound like my Nathan is so many ways.
My son Nathan who is 5.. has lots of issues.. sensory issues are huge, as well as communication, etc.
All over the place for sure!!
He is very much into plugs and fans.. things that light up and play music.
Socially has alot of issues.
We are having him evaluated by Easter Seals on April 1st for an official diagnosis.. which we are pretty confident will be on the Autism or PDD spectrums or a Sensory disorder.
Since april 08.. he has had sleep issues.
And in the last 5 wks.. has hit a wall.. digressing in so many areas.
I would love to talk to you more.
Email is: ____@____.com

He does sound like he has a lot of characteristics of a child with a Sensory Processing Disorder as you described. Maybe you could set up an evaluation with an Occupational Therapist at an oupatient rehab clinic through your insurance - if your pediatrician agrees, he/she can refer you. Does your child have any difficulties following directions or understanding language as well? I think the book you bought might answer a lot of questions for you. You sound like a very observant and supportive mom!!

This definitely sounds like Sensory Processing Disorder. My son has been diagnosed with it. He is in kindergarten now, and seems to be learning how to cope with his surroundings a better now, but it was hard at the beginning of school.

Here are some of his characteristics:
He has always been afraid of stairs, he used to bang his head a lot, he touches other kids at circle time and shouts out answers, he shows remorse, yet always seems to have a logical explanation in his mind about why he did something he wasn't supposed to do, he used to fall asleep only when we rubbed his back and still loves to cuddle, he has to wear socks to bed and sleep with a fan on, he does not like loud sounds or busy places, he gets totally bent out of shape when something doesn't go his way or when he has to make a choice between two things he wants, he (sometimes) hits kids when they make fun of him or do something he didn't have planned, he does not transition particularly well and needs to be redirected many times to both begin and finish his work (yet he works way above grade level in every subject), he is obsessed with trains- beyond what seems like a normal childhood interest, and probably many other things that I just can't think of right now.

It will be important to work closely with the schools and set up plans to help him succeed in school. My son is part of a social group through special ed. where kids talk about how to treat other kids during different scenarios and learn anger management skills. His teacher is fabulous and has set up a behavior chart for him and alternative places and activities for him. He has come a long way since August and no longer feels like school is a place where he gets in trouble. Special education programs are so customized these days. They do sensory breaks, OT, brushing, weighted vests, and so many other things, so don't feel discouraged (though I know it's easy to worry). We want our children's lives to be smooth and successful, and SPD can definitely interfere with the vision we have of how we hope our children will grow up. But there is hope. If I were you, I would try to set up some routines, rules, and consequences that support him now in preschool. That way you when it comes time to enroll him in Kindergarten, you'll have a toolbox of some strategies that help him learn AND enjoy school.

Also, in brief response to a previous posting about over-labeling and drugging. I agree that we are quick to label and "treat" disorders with drugs in the U.S., but being proactive is better than ignoring the tell-tale signs of SPD. Not one of these posts mentioned drugs. Most of the treatment options are natural, holistic, and healthy. A mom usually knows what is "normal" childhood behavior and what is not. As a teacher, I have many examples to compare my son to, and I know that there is something unique about him, but I wouldn't change him for anything. He is loving and sensitive, smart and perceptive. A few challenges are worth the overwhelming joy he brings us.

Goodluck!

Before I begin, please know that I write this with all due respect. I don't know your son, only what you write about. When and why is it so customary for society to label small children? I find it alarming. Alot of what you described sounds like normal 3 year old behavior, but we have drug companies and doctors stuffing OCD/ADD/ADHD/hyper this hyper that down our throats. It's a wonder everyone is not on something. If you can track down a documentary by the name of Making a Killing (the untold story of psychotropic drugging) please do, and watch it...with a notepad.
I think if you are looking for SPD, you will find it. If you are looking for a bright, curious, mischevious child...you just might find that. Good luck.

It sounds like your son does display many of the SPD characteristics. While at your doctor's appointment I would make sure you ask for a referral to a pediatric OT. They specialize in SPD and sensory integration therapy. (I am an OT). The OT can evaluate him and offer information and suggestions for home and provide SI therapy (if needed). You are already doing many of the things that will benefit him by rubbing him, hugging him etc. . .Sounds like you know what he needs to calm down.

Also after reading the other responses I want to add that this is VERY common. . .just about any pediatric OT will be able to treat him. Every OT is trained in SI (as long as they have graduated in the last 15 years), but some have gone on to specialize or enhance their knowledge further through special training. School system OTs (are also trained in SI) but are very limited in what kind of SI they can provide in the school system. They often do not have the equipment they need, but I would not rule out going to the public school OT for additional help and resources. They can definitely supplement what you are getting from an outside clinic as long as it is educationally relevant. Even though he's only 3, he does qualify for special ed within the public schools. I'm not sure where you live, but if you are near the Cape, I know several pediatric OTs who can help you out. Good luck!

The public school system has resources for you, but sometimes you must demand them and tell them that his behavior is interferring with his learning. Sometimes that is the only way you can get the help you need. If he is evaluated you may get a special occupational therapist who can work with you and your son perhaps twice a week. It would be like going to a speech therapist, where they do special lessons, games, etc. Also, they may help you with different disciplinary techniques, as well. Don't just wait to see what your doctor says, talk to your school system and get the help now. doctors might just say, oh he will grow out of it... but if you get the help now, you will be able to help your child and you will be armed with the knowledge and resources that will help your child succeed in the school environment and at home. I wish you must success. .... Also, make sure he is not eating anything with artificial colors or ingredients, sometimes this causes kids to act up. I know blue dye makes my nephew act like a different child, some kids are affected by red dye. I just wanted to add that I am so glad Caron wrote you such a detailed letter. I'm sure it is not only appreciated by me, but by others on the site! Thank you Caron!!

Hi C.,
It certainly sounds like SPD could be a viable daignosis but it could be other things as well. I am a Special Needs teacher and without meeting with your son there is really no way to diagnose him. If you think your pediatrician will sweep your concerns under the rug I would recommend seeing a child psychologist who could observe and asses your child properly so you and he could get a more proper diagnosis. Whatever the diagnosis, early intervention would help greatly. If I were you I wold request a referral from your pediatrician for a child psychologist and if he/she doesn't feel it is warranted I would press the issue either with the doctor or through your son's school system. Parents can always request a preschool screening from the public schools if there are concerns. If a diagnosis is made, the school system would/should have to pay for any educational related services which would certainly be helpful to you. I find most of the time that parents need to fight to get servies for their child. Don't be afraid to be the squeaky wheel. :o)

Hi C.,

I have a friend with a an almost 3 yr son who sounds very, very much like your son. After much investigation and visits with her pediatrician, psychologist and several therapists, her son has been diagnosed as being "on the autism spectrum". However, at first they did think that it was SPD. The important thing is that now he now gets the help he needs and has made HUGE progress. He meets with an occupational therapist and speech therapist several times a week and goes to a special ed preschool program through the public school. By the time kindergarden comes, he's expected to be able to just integrate into a typical class.

Just for the record, my friend was initially skeptical about the autism diagnosis because she really thought it was SPD and never considered autism as a possibility (and even the pedi thought it might be SPD at first too). However, she went to several other doctors within Children's Hospital and they really thought that it was more of a milder case of autism. Now she doesn't care what they label is that they've given him as long as it enables him to get the help he needs - and it has.

Good luck to you and as all of the mothers on here will say, just keep trusting your instincts and don't let the issue drop until you feel that you've got solutions and exhausted all of the possibilities.

You could be describing my 12-year-old when he was 3, 6, etc.!

You've gotten some great input here that I hope is helpful. It's certainly been helpful to me! I would encourage you to address things earlier than later. My husband is old-school and is convinced it's all just something our son, David, will grow out of. True, but at what cost? I have gotten stronger in getting him help in latter years. A day late, but still helpful.

Our son has definitely had kids back away from him, challenges with teachers, and his psyche and self-confidence are delicate at times because he doesn't understand why people don't like him or some of his behavior. He is coming into his own finally, at 12, but it has been a LONG haul and probably always will be.

Our son has had some amazing teachers who have connected well with him through the years, and we've tried to be as supportive and honest with him as we can to help him understand what's going on. Plus, he has developed some strong friendships, with some friends in the last couple of years, that have profoundly warmed his life and how he sees the world.

But he's one of these kids that tends toward ADHD but doesn't fully fit it. (We and his teachers assessed him but he was borderline ADHD.) SPD might be his thing as well, but again, he's not enough to be diagnosed with it. He is like many kids, I suspect, who fall on the periphery of several labels. No one term fully describes him, but they all describe aspects of him. It's enough to be a challenge, but not enough for services. It's maddening!

That being said, loads of love and hugs and talking at bedtime do wonders for him. At bedtime, he loves to have his scalp scratched from front to back or his temples rubbed, or for me to stay with him as he falls asleep. These techniques help him get in the right frame of mind for sleeping. He also does well with classical music at bedtime to lull him to sleep. (He also likes "The River" (WXRV), but sometimes that keeps him up. If there are too many songs he likes, he sings long into the night, which can be counterproductive.)

At 12, he still LIVES for his stuffed animals and still reaches for his satin tags on his clothes for comfort. I used to get a little weirded out about this, but he knows best what helps to soothe him.

Perhaps because he is an only child, his stuffed animals have become larger than life for our family. They are his siblings, his confidants, etc. But, hey, whatever works, run with it! Fortunately, he has a great group of friends, and us, in real life to keep him grounded.

Children like ours are a delight and a challenge. Books like the Out of Sync Child and Your Spirited Child have been helpful through the years. Children like ours are true gifts of empathy and wonder, along with the hard stuff. Be there for him and don't give up. You may find answers that help you earlier than I did. And if so, Brava!

Best of luck and be persistent. Like someone said, don't be afraid to be the squeaky wheel!

Peace and good humor to you! They will carry you through the tough spots.

C.,

it actually does sound like your son has sensory issues, which is not the end of the world. You will want to get him evaluated by a reputable neuropsychologist.

I would also recommend a child/family therapist to help him focus and to help the family (parents) learn how to communicate with him so he can "hear". Sometimes sensory issues appear more substantial than they are due to increased anxiety as a result poor sensory integration. Sensory dis-regulation often co-exhists with emotional dis-regulation. Play therapy can help in this area.

Occupational therapy is also a wonderful intervention which I highly recommend starting early.

If you would like some help finding people in these areas, let me know.

C.

i'm not sure where you are located. check out www.buildingblocksct.org or call ###-###-#### ask for Jolen. if u are not in southeastern ct, they would know where you could speak to someone about your concerns. it makes a world of difference!

I know you may not agree but it sounds like your son could have ADHD. Often times children with ADHD also have sensory issues (including wanting to snuggle often) and have difficulty understanding the space around them. Overstimulation in any environment can aggravate this. For example being in a classroom with too many expectations (even the most minimal expectation like sitting through circle time) can seem overwhelming to a child with ADHD. These are some of the things that I find useful when working with children like this 1. a clear concise schedule of the day 2. a behavior program with clear rules and consequences (ie timeout). It is important that these rules be clear so that after taking a time out he can identify from this list of rules as to which one he broke. 3. Visual Cues throughout the day (ie pictures of children behaving appropriately and inappropriately). 4. The use of Occupational Therapy strategies (ie a move and sit cushion to sit on during school, weight vests, cacoon swings, and a whole host of other things that could be useful to your son). I'm sure once you consult with your doctor he'll be able to give you more information about these things. Do not get discouraged your son can be successful in any environment and it sounds like you are willing to do whatever it takes to ensure he is happy.