Well hello there internet

Long time no see, ey?

This post has absolutely nothing do to with crafting or sewing, but hey…it’s my blog and I can post what I want, right?  Plus, it’s what’s consuming my thoughts these days…

DSC_0488

See that kid?

I adore him.  He makes me laugh ‘til I cry most days.  But he’s hard.  Like really, really hard.  He’s made me question every ounce of my mothering ability.

I KNEW something wasn’t right, pretty much from birth, even though I got laughed at and brushed off whenever I brought it up.  He was meeting all his developmental milestones.  He was obviously fine, right?

Wrong.

It  looks like he has SPD (Sensory Processing Disorder) or SID (Sensory Integration Disorder).  I don’t even know what the difference between the two is yet.  Maybe there’s not one?  I suppose I’ll learn in time.

Basically, as I understand it, his brain can’t differentiate between the things it needs to pay attention to and the things it doesn’t.  Everything comes through full blast and he gets overloaded.

And then he loses it.  And he can’t really help it.  And the staring starts.

(I’m talking to YOU, mean lady at the fabric store who came over and asked me if I was finding everything all right no less than FIVE times whilst I was trying to get him calmed down.  Believe me, I wanted to be in your store even less than you wanted me there.  And your interrupting was NOT helping.  Try living with it all day every day for 4 years.  I went in my car and cried.  I’ll go somewhere else next time.)

It’s not because I’m a bad parent and I need to be more strict or on a better schedule or have more of a routine.

It’s just how he is.

And we’re working on it.

Unfortunately, there’s a several month wait for therapy (and this is therapy that we’ll be paying for, not free, which is another rant on its own)….longer for a different type that we’re considering.

So, on the off chance that any of you have dealt with this and you managed to make it through all my rambling…

Any book recommendations?
Any websites?
Any experience with TLP?

Thanks.

Comments

  1. I have no clue of helpful tips, but I wanted to tell you you guys will be in our prayers…it's hard being a mom and I bet even more hard not being in control!

  2. Life in Rehab says:

    Just a little note of encouragement…if you've ever been to my blog, you know I have three great teenagers. The first two are boys. The oldest is graduating from high school with straight A's. The younger one has B's and is a Junior. They both do demolition and construction, the younger one has a cooking segment on my blog, and the older is a partner in a production company making short and feature length films which he also writes and acts in.

    Why is any of that interesting?

    They're both Autistic.

    You have your diagnosis now, so you know what you're dealing with. The rest of it is remembering that your primary job is to get him to a successful adulthood and out into the world with all the skills anyone else would have, just maybe at different levels. And don't believe "them" when they give him limits. They have no idea the magic you created when you became a mother.

    Did I ramble too much?

  3. Oh honey! I'm so sorry that you have to deal with inconsiderate people! I'm constantly trying to educate people on the fact that "everyone has their own set of issues and problems – they may not look like it – but they do – cut them some slack and mind your own business!"

    A friend of mine has a son with Epidermolysis Bullosa – he has sores and blister and a trac tube – she gets stared at all the time. She had some business cards made up with her website, the disease, a brief explaination and another website to get more information. She said it has made a world of difference in how she feels after one of "those" encounters.

    I don't know anything about your son's condition but I really hope that you find the answers and treatment that you are looking for.

    Janel
    mackenziescraftymom.blogspot.com

  4. Krafty Like A Fox says:

    I have a friend who has SPD, but he wasn't diagnosed until high school. If you want, I can ask him if he'd be up for opening a conversation with you. He's a very nice guy who is a active participant in the discussions about the neurodiverse community and gives thoughtful responses to questions.

  5. Resweater says:

    I am going to be following these comments, because my son is in the process of being diagnosed with the same thing. I wish I had some advice for you, but we are in the same boat.

  6. Allison @ House of Hepworths says:

    My son doesn't have SPD or SID, but I really feel for you. Really. My heart hurts for you! My 8 year old son was (finally) diagnosed with ADHD in September, and what a miracle it has been for me to get him on medication. (I know there are so many people who debate medication, but this is what we've chosen to do so please don't flame me.)
    I'm not suggesting your son needs medication – he has a different issue, I'm just trying to say I can relate to how you are feeling. My son was totally out of control for the first 7 years. I cried in my car countless times. I cried in my pillow more times than that. I should have known something was up when he crawled on top of my 5 foot tall upright piano at 11 months old (before he could even walk!). He learned how to do monkey bars at 2 and a half. He never would play on the playground the *right* way and had other mothers in a fit of panic that he was going to fall and kill himself.
    He would bolt at stores, I had to put him on a kid leash. He acted like a complete spaz most of the time, and I dreaded taking him in public with me because he was just SO HARD on me. I've left Wal-Mart in tears or fuming angry more times than I can count.
    I resisted having him checked for ADHD for a long time. I kinda thought he might have it so I read lots of books and tried all sorts of behavior modification techniques like changing his diet, cutting out sugar, setting up routines and charts, etc.
    Finally he was diagnosed with ADHD and was put on medication. He's on the lowest dose (I think he needs a little more actually) but OMG the difference in this child. I can take him in public. He actually stays on Green or Yellow at school now. I hardly get calls any more from his teacher (he's never bad, he just wont shut the hell up or stay in his seat!). He's calm. He'll sit and play now.
    He thanks me for his pill because he says he likes feeling like he's in control of himself. Without it he feels so stressed out and wild and like he just can't control himself. Now he feels like he's the one in control of himself.
    It was a really long fight for me and I literally cried 4x a week for the first 5 years of his life.
    But there is light at the end of the tunnel. A pot of gold at the end of the rainbow. Hang in there. Keep being a great mom. Work with him. You'll figure out what solution works best for him eventually. Hy heart goes out to you.

  7. Life in Rehab says:

    Allison,

    We chose meds for the oldest because they were right for him, and then weaned him off two years later when he had a better sense of self control. You made a tough decision, and it was the right one for you, period.

  8. I read your sweet post today and I want you to know that you are NOT alone! You can see my blog and the post I put on it about Tolerance. I will be thinking and praying for you and your son! I really do understand how frustrating things can be and you have a lot of support and love out here in the blog world. :)
    Take care!

    Heidi

  9. Allison @ House of Hepworths says:

    Life in Rehab,

    Thank you! It was the best thing for him for sure.

  10. I forgot to mention one other thing. My son had sensory issues when he was younger…he couldn't stand to have his fingers and toes touched or his teeth brushed and through some occupational therapy we discovered some "sensory..brush" techniques and worked with some amazing therapists. It is something for you to look into that might help.

  11. Hi. My mom is a follower of your blog and she forwarded your entry to me because she knew I could relate.

    My son is 11 now and he was diagosed with ADHD, SID, and CAPD when he was 4. They also suspected autism, but they ruled that out because he had a desire to speak to others although he showed several of the signs for the disorder.

    It's been a long haul. I followed him to school for several years and shadowed him while we waited for the school to get their act together to get him help. When we finally did get help, nothing really helped him at all. He was constantly acting out, getting frustrated, hurting himself, etc. We tried several rounds of meds and none gave him any relief.

    I totally know where you are because I've been there. I was treated for depression in the beginning of our search to find answers. I've fought battle after battle for him, read books, taken classes, been kicked, punched, and yelled at by my son over the years.

    He is much better now. Maturity has helped. He still withdraws and acts out movies. He stlk has trouble focusing… He is distracted constantly. But it's better than it was. Plead know it will get better. It's a continuous road of getting answers, dealing with setbacks, making progress, etc.

    This year I pulled him from the school system and now I homeschool him. The progress he had made excellent progress but we still have far to go.

    Do not be discouraged. Be strong. You can do this.

  12. Kris {The Freestyle Mom} says:

    I have no experience to share, but I'm glad you've trusted your mother's instinct!

    With a great mother, it will all work out beautifully in the end.

  13. Kermit~the~Frog says:

    Interesting reaction, me wanting to punch the person who made you cry. I don't like the idea or visual of you crying, because you're one tough woman and I need to hold onto that. I'm going to to give that some more thought.

    I have no resources for SPD or SID, though check back in a few years when Sweetums starts therapy for OCD. It's coming.

    Anyway, I have no doubt that you've got this one in the bag. There is nothing you can't handle, because you're not alone. And not in the Doctor Who way of being not alone, because that way sucked. [Oops, nerd tangent.]

  14. Aunt LoLo says:

    No real experience to share…but HANG IN THERE! And go check out Our Little Tongginator. It's a blog, written by a friend of mine. She has SPD…and so does her (adopted) daughter. They have opposite kinds…because the universe has a sense of humor. She'll DEFINITELY be able to help!!!!

    http://www.ourlittletongginator.blogspot.com

  15. Sweet Fuchsia says:

    What a cutie, that kid is!

    My Crappy Recommendations (hee hee): Sometimes I think it helps (as a mother) to remind ourselves how blessed we are. I'm not saying you aren't feeling blessed…I'm saying, that's what I have done…and it helps…believe it or not. :0) I remind myself we are all where we are meant to be…that everything happens according to a greater purpose…blah, blah, blah.

    There are 'issues' kids deal with, where there are no 'quick fixes,' such as medication, diet, therapy, etc.

    Just so ya know, I also have four kids…mine are 21 years, 19 years, 17 years and 22 months. Woo hooo…I have over a double decades worth of experince! :0)

    I love your blog, by the way…been following for a little bit now. :0)

    Everything is going to be fine…for realz…it is! :0)

  16. Hang in there! I've worked with kids with sensory integration issues, and sometimes they just need lack of stimulation. I know, easier said than done, especially when you're trying to get things accomplished. Like, oh shopping, or making dinner. One of the boys that I worked with was older (11) and he would sit down, curl up, and put his hands over his ears. I would wait for him to stop rocking, a sign I knew meant he was getting some control, and then start rubbing him gently on the back. It seemed to help 'bring him back' and help him make the transition to sound and light. It looks a little crazy, but it worked for him. You may try making a dark, cool, quiet space for him that he can go into when he gets overwhelmed. Over time, he'll learn when he needs to withdraw and it will become more manageable for both of you.

    I also know parents who used a massage technique that involves using a soft bristle brush and brushing the entire body with gentle strokes. I think the idea is that by introducing repetitive stimulation–that a child can anticipate (read: control)–it helps calm the brain, thus calming the child. I had a massage therapist suggest it for me once when I couldn't get rid of a cold. It's supposed to move lymphatic fluid around (? I think), but I also found it quite soothing. Start at the feet and work your way up the body, encouraging your son to relax as much as possible. You may want to do this at a time of day that is already his calmest time.

    Okay, last thing: when I was a psychology student, I remember learning that scientists suspect that our senses aren't as differentiated in childhood as they are when we're adults. So that means that infants may have a visual component to sounds–imagine a visual disturbance to go with sounds. Or smelling something (good or bad) when you get touched. Yikes. There are some adults who continue to have sensory integration concerns, including people who associate smells, colors, or tastes with letters. Not a big deal I realize, but still interesting as we think about how different brains process information.

    So all this to say that he's going to grow up perfectly fine and healthy. Especially if you think about the fact that the brain is always developing; maybe his senses are just taking a little longer to differentiate. So he gets overwhelmed more easily than other kids or he's more easily distracted. And then loses his stuff. I bet he's going to be super smart and super sensitive as a result of this experience.

    And you're going to learn how to give the mental finger to intrusive, unhelpful women at the fabric store.

    I wish you the best of luck,
    Amy

  17. Life in Rehab says:

    At the very least, you have a lot of empathy and support.

  18. brown paper packages says:

    I wish I had more information, but I did want you to know that I am thinking of you. Way to go, for trusting and sticking to your instincts. You are such a great mom, and I'm hoping you will be able to find answers and help very soon.

    -k

    p.s. I hate mean ladies.

  19. I wish I had some good advice to give. I have no personal experience with this and don't know anyone who does. I understand, though, that while, with autism, there is a lack of social understanding, there is also an issue of how the brain perceives and becoming overwhelmed with perceptual information. And so I thought some of these might interest you.

    This is from William Stillman's website. He is an Aspie who does autism research and a variety of other public relations things about autism. http://www.williamstillman.com/archive.html

    These are his archived articles. They are absolutely fascinating, and I think you'll see that some of them relate to your situation. I particularly would love to make this one required reading for people like all those morons that make people feel uncomfortable in the store when their child gets overwhelmed.

    Anyway, I could go on, but I'll let these speak for themselves. And it's obvious that all of us believe in you and your abilities as a mother. And I know that your son will thank you one day for being there when he needed you most. ((((hugs))))

  20. twrightgirl says:

    hello, i do not have a child with this but have been following another blogger that has a son that sounds similar. This is the link to the post: http://www.thewellroundedmama.com/2008/09/my-out-of-sync-child.html

    she has a book and website listed there that helped her get started and i thought maybe they could help you.

  21. I'm glad you guys are starting to get some answers for him, and validating what you've known all along. I'd offer hugs if you liked them, or pancakes. Instead just know i really admire you, as a mom in addition to much more. And that Campbell is one tough kid. Just ask Seth. Good luck and let me know if you need anything.

  22. Seasons Boutique says:

    His letters are perfect :) love you!

  23. First of all, what a great community of support! I have been reading your blog for a while now, and I have to say- I am so glad you trusted your instincts. I have a ten year old daughter who was diagnosed with CAPD three years ago. I KNEW something was wrong, we had a horrible time learning to read, she miscoded words, but no one could really tell me what it was. Even when she was a baby- I could tell that she would get overstimulated. When we were given the diagnosis- it just clicked. I knew they were right. I am a teacher, and see lots of issues on a daily basis. I also see kids overcome them. The only advice I can give is think about how you picture him as an adult. What values do you want him to have? Do you want him to be successful (I know that you do, of course)? Then, remember that is what you are working for. It helps me remember not to sweat some of the small stuff that may seem like a mountain today, but is really just a bump in the road in the grand scheme of things. My thoughts are with you and your son. ;)

  24. Lisa Marie says:

    I completely understand how you feel.
    My nephew is severely autistic. At 7 years old he is much taller than most kids his age (his dad is 6'7") so he looks older, yet he can't talk and can't really communicate in any way other than shrieking or babble. He has learned some sign language, but mostly "I love you" and things like that.
    Taking him in public is a struggle for me, only because I lose my temper with the people staring at him in disgust as he carries his pacifiers around with him. Note I said "carries"… he doesn't use them, just having them in his hand sooths him and is one of his many "things" that he does. He is usually in his own world and cannot process things the way your or I do.
    I am always pointing out to people how ugly they look when they judge a little boy for something that he cannot help (as I tear up even typing this).
    Therapy takes a long time. It's a slow process and one that you must be patient with. I know that you have that capability because you've made it four years so far.
    I do know that my sister is my hero for putting up with the judgemental people EVERY… SINGLE… DAY. You would've probably laughed if you had seen me get in the face of a lady in Starbucks that more or less looked at and treated my nephew as if he was a disgrace to humanity.
    Kids with special needs or development issues are so severely underestimated and misunderstood it's just sad. They are bright. Brighter than most, even. They just have to be given a chance to find their purpose just like the rest of us.
    I wish I could just reach out and hug you.

  25. I wish that I had some great recommendations for you! I work with special needs pre-schoolers, primarily kids with developmental and cognitive delays. I can empathize with how you feel when he is screaming.

    Keep pursuing the therapy and whatever else you can to help him. I don't know what your local school district is like, but here in MN the school districts can be a HUGE resource for helping kids and parents learn how to manage needs.

    I couldn't agree more with Lisa Marie when she said, "Kids with special needs or development issues are so severely underestimated and misunderstood it's just sad. They are bright. Brighter than most, even. They just have to be given a chance to find their purpose just like the rest of us." I see this in my students everyday!

  26. I'm so sorry to hear that! 10 months ago my three oldest were diagnoses with Asperger. They all have lots of sensory issues as well. But while our kids have different issues I do know what it feels like to rock you world with a diagnosis. Relief that you finally have answers, sadness realizing it's a lifelong issues, etc.. And last month my husband received the same diagnosis (aspergers). Those same feelings came back. Relief that I know why he does certain things, and sad that I know it also means that he can't control lots of it and it means it won't change. But in the end answers and getting support and help is just wonderful! Finally having answers and advice and suggestions changes so much. Just seeing what you accomplish here I'm sure you'll do great (doesn't mean it's not hard though!).

  27. porter family says:

    wow! char, i had no idea you were dealing with this. i knew he could be a handful but didnt know that you suspected it was something more than that.

    i dont really have anything helpful to say except good luck! and when the whole situation makes you crazy, just remember how damn cute he is!!

  28. Hi, as expected a mother always knows, don't we? Each of my children have had sensory issues, none of them severe or even notable now. I think we all have some sensory issues to a certain extent. But the only reason I became aware of them was through a occupational therapist friend to whom we would hang out with and she would explain things. My nephew who has cerebral palsy was also dealing with a few and I would quiz her. A good forum I like a lot is http://www.mothering.com, there is years and loads of information from other mother's on there from a wide variety of all issues including spd in the special needs. Also, http://www.theraproducts.com has a GREAT catalog for all sorts of therapautic things, toys and tools and books, great for any kids or adults- 20 + books alone on sensory issues – this will be good because home therapies will greatly help!. Lots of info too. Good luck in your pursuit of information and enjoy your lovely son:) -kari

  29. I unfortunately have no suggestion other than looking at some of the resources for Autism because it sounds similar but I don't know or Google.

    Please know that you and your family are in my prayers.

  30. Chrissy-teeny says:

    My sister in law follows your blog and told me to check out your post. My 3 year old son was diagnosed SPD about 2 months ago. I have a heap of information and I UNDERSTAND what you are going through!! (((((BIG HUGS)))))) We are, also, considering the possibility of Asperger's Syndrome with my son, something I never related with my son. Big changes have been happening for us and I am very happy to pass on my information to you. It would have helped me a lot of someone could have pointed me in the right direction to what was available. I am, also, a freelance writer and I regularly publish articles about ASD and SPD. Please feel free to email me!! [email protected]

  31. If you are in an area that has an occupational therapy school look into if they have a clinic there for treatment.
    Also look into The Listening Program, it's a great program that helps children the sensory processing disorders.
    Good luck to you, he looks like a keeper! ;)

  32. I don't have any advice but I feel for you. You are a WONDERFUL mother.

  33. My son was diagnosed with it 1 1/2 year ago. 2 things that helped him 150%. PRESCHOOL< PRESCHOOL< PRESCHOOL and Occupational Therapy. I can't say both of those enough, seriously he has come leaps and bounds. We recently went back to Ot for some more therapy. "The Out of Sync Child" is a great book.
    E-mail me if you have further questions my email is [email protected]. It feels good to have a answer.

  34. Chrissy-teeny says:

    I emailed you. :)

  35. Never doubt a mothers intuition! You seem like an amazing Mom and you will figure this out! Good luck!

  36. Our Family says:

    After reading your post this morning, I found this in my reader in the afternoon. I truly hope this helps your family and connects you with a network of people living a similar life. : ) http://montessoritraining.blogspot.com/2010/04/montessori-education-sensory-processing.html

  37. Other than encouragement, I have little to offer, but DANG! Look at this support network you have! You are one lucky lady.

  38. Courtney Price ~ Vintage Ginger Peaches says:

    YES, I know what you're talking about and we've been dealing with it for 7 years. My dd "is not bad enough" (according to who? yeah.) to really be considered for any programs, but when you mentioned your fabric store experience. I was like "been there!" I would absolutely love to talk to you about it. It makes me tear up just thinking about it because it is SO HARD to figure out what things are helpful and which aren't. If it gives you any hope, my dd has grown in ways I never thought possible over the last 3 years. At age 4, it was a constant source of frustration, anger, stress, sadness… so many emotions!

  39. Courtney Price ~ Vintage Ginger Peaches says:

    Oh, PS, my email is on my site.

  40. Long time reader (non commenter) of your blog.

    My son also has SID/SPD. He's 5. He's starting kindergarten next year. I took him to the roundup and cried. I am praying and hoping it works out but we've been a homeschooling family in the past so I know we can do that if we need to. Can I admit – I want him there. 3 glorious hours with my 2 little ones. It sounds horrible. It was something I promised I would never say. I am looking forward to those moments though. I am stressed and tired all.the.time.

    What works for us – Feingold diet. Good pediatricians who understand (are you in Utah? Healing Solutions Pediatrics in SLC is phenomenal). We couldn't afford the occupational therapy. $150 an hour multiple times a week. I studied speech therapy and did it on my own. The Out of Sync Child books were heaven sent. The Out of Sync Child Has Fun has been great to get those "therapies" in that my son needs.

    Those people that look or comment? If I speak to them at all I tell them he has an autism spectrum disorder and that we need a minute to ourselves. I try to have the nervous breakdowns later. At home. With chocolate :)

    Good luck.

  41. You are describing my daughter! We do TLP, and I love it. Also we did Interactive Metronome. Unbelievable program. It took years to get someone to listen to us that something wasn't right, and finally when we moved, we found a great place. Is bedtime a problem? We were trying to give no simulation, and found that she needed a certain amount. my email is armybloggerwife @ gmail DOT com.

    We have also done LENS, but I won't write about that here.

    Oh, and my daughter got kicked out of VBS. They blamed me of course.

  42. Oh, and we also do "brushing" which has helped with a lot of problems that Abs had with clothing, tags, etc. It will also calm them down immensely.

  43. altarflame says:

    I've been dealing with an SID/SPD (same thing, name is changing from former to latter) son for a long time. He's the second of five closely spaced kids. We do all of his therapy at home and always have, and it's made a HUGE difference over the years. My immediate advice to you would be to buy a trampoline; start giving him really firm massages and/or even laying flat on top of him when he's super-hyper-nutty; try to have one on one conversations in dim light when everyone else is asleep; stop expecting him to hear you because you're calling him, when other things are going on – he's not ignoring you – and start making physical contact, crouching for eye contact, and so on before you begin whatever you have to say; and google the ALERT program.

    I hope this doesn't sound bossy or condescending; someone anonymously pointed me towards your post because they lurk on both of our blogs and I don't have a lot of time today. I'd be happy to elaborate another time if you want me to, though – my email is altarflame @ yahoo.

    Good luck! Our biggest challenges definitely came BEFORE we understood SID. Knowing has only given us tools, and they really have made a huge difference. My son was way behind on milestones before we started (at 3.5) and caught up within 6 months once we did. So hopefully this is the beginning of good things for you.

  44. HUGE HUGS! My 3 year old was just diagnosed Autism and SPD. A great book for you is The Out Of Sync Child. It will give you a better understanding of how his body takes in information. Get everyone to read it. You will also learn things you can do at home to help him, while waiting on OT.
    Its not the end of the world, you will learn to help him and love him all the more because of these things. You are a great mom!

  45. There are too many comments for me to read thru right now.. but jic no one else mentioned it read "the out of sych child" LIFE SAVER!!! I have to kids that are ASD..one has aspergers, and teh other is ADHD/aspie..it's hard also find yourself something like this.. i print something like this *http://www.tacanow.com/store/product.php?productid=16156&cat=258&page=1* off my computer and hand them out to people like you mentioned..Hugs, and know that with time…it gets easier it just takes time!

  46. Knowing you and seeing you parent in action I just want to assure you that you're one of the best parents I know. I know nothing- but a very good friend of mine is the top OT in Nevada. I am going to forward her this link and your email. Hugs all around.

  47. My son is 29. He was diagnosed with severe learning disabilities when he was in 1st grade. Back then, they didn't classify it as "SPD", but I remember one of his doctors telling us what it was like to be our son, sitting in a classroom at school. She said "He feels the clothes on his body, his body in the chair. Any noise in the hallway – someone sneezing or walking by, or a noise outside and he hears it. He can't filter out anything so everything comes in and he gets distracted easily."
    All I can tell you is to hang in there….the therapy does help and your son will develop coping skills as he gets a little older. It will be a rough road at time, for your son and for you…but you'll get through it and be stronger for it. {Hugs} to you all!

  48. Sending you bug hugs. I know you have a good support system and that's so important!

    Thanks for your comment on my silverware project. I am going to track yours down and add it to the post. I must have missed that one and the magazine article. I am sure it is cute!

    XOXO
    Jen

  49. My mom didn't recognize it in my sister until she was in college. For years they just thought she had ADD. After learning about it, they both read several books(those mentioned in comments) and everything in them described her. It didn't really change anything except that she now knows why she was "different" all these years and had quirks like being unable to tolerate people that made smacking noises when they talk or eat and why she wouldn't wear socks or panties when she was 5. And I guess we're more understanding of current things that affect her. Regardless, she's been successful, developed her own coping strategies without even knowing that she needed to, and came out of it all pretty great in the end now that she's all grown up. Without any therapy or acknowledgement of what was affecting her, it was a bit of a struggle for her and my parents all through school. Be excited that you can address this so early!

  50. I don't personally have any experience with SPD but I have several friends who deal with it on a daily basis. Their recommendation – patience. Its hard but with time and patience, you'll find what works for you and your son. Here's a link I shared with one of those friends:
    http://www.our-kids.org/Archives/Holland.html – Its an essay called "Welcome to Holland" by Emily Perl Kingsley. It made me think of her and how she deals with her son. Reading it made her and her husband cry. I think its a good perspective when anything in life doesn't turn out exactly as you expected, especially when its your child. Anyway, thought you might enjoy reading it.

  51. Rugrats & Royalty says:

    No advice just heartfelt thoughts & prayers to you. And to let you know that the fabric-store-clerk-who-can't-mind-her-own-business is the one with the problem! You're a *fabulous* mom & this post is a testament to that!

  52. Rugrats & Royalty says:

    No advice just heartfelt thoughts & prayers to you. And to let you know that the fabric-store-clerk-who-can't-mind-her-own-business is the one with the problem! You're a *fabulous* mom & this post is a testament to that!

  53. I don't have experience with that, though I do have a VERY difficult child (he's 6 now). Many a times I have left the store crying…even the other day! I thought we'd grown out of the trips from hell:). So I feel for you, even though he doesn't have that…sometimes I wonder if there is something though. Good luck Char.

  54. Glad to add an amen to the Out of Sync Child books, they are wonderful!

  55. Mormishmom says:

    I just read posts about this on another blog I love to read and maybe something she has written will help

    http://beachbrights.blogspot.com/2010/04/this-is-gabriel-making-sense-of-school.html

    http://beachbrights.blogspot.com/2010/02/stopping-to-smell-rosesmy-sensory.html

  56. madebymegs says:

    I know exactly how you feel. My son was almost two months premature and is mentally and physically behind where he should be. People just stare at him and make me feel like crap.

    Hang in there…eventually it will become a bit easier for you. People can be so ignorant and act like idiots when it comes to children. Seriously, I bet there children had meltdowns at one time or another too. I hope it becomes a bit easier for you :)

  57. I'm sorry I can't relate, but I just wanted to say that you and BC are some of the most amazing people I know. I'm certain it has been and will continue to be challenging for your family, but I know you have the strength to be wonderful parents to all of your children and that he is fortunate to have parents that will do all they can to help him through this.

  58. Hi,

    It looks like many people are giving you support, but as the mom of a SPD kiddo, SPD author, and blogger, I wanted to say, YOU ARE NOT ALONE!! : )

    And just so you know, SID and SPD are the same — they have moved to using the term SPD with the inclusion attempt at the DSM-V.

    I am HAPPY to answer any questions you may have, and please check out my blog — lots of good info for SPD parents.

    Take care — and hang in there,
    Hartley
    Author of This is Gabriel Making Sense of School
    http://www.hartleysboys.com

  59. The Overdramatic Girls says:

    My cousin's little girl has the same thing, and she's about the same age. I'd be happy to ask her anything you want. I'll ask her for any books or other recommendations. Good luck. And I hope somehow the lady at the fabric store sees this…

  60. My son has a mild form of this along with add. Please know that you are not alone and there is help out there. Until you get the help he needs please know that you are not alone and that we will be praying for you.

  61. Sarah or someone like her says:

    I could have written your post. Minus the having to wait several months for therapy. Well – and the rude lady at the fabric store, but we've had our fair share of public breakdowns as well. I wish more people knew about SPD. Good luck on your journey!

  62. Char – I read through the comments and it looks like you are getting some great advice. My oldest son, who is now 13, has been dealing with SPD since he was very young. He has come a very long way, but some things are still difficult. I have gotten a lot out of The Out of Sync Child, and Interactive Metronome therapy helps him a lot. We also did hippotherapy (occupational therapy on horseback) for quite a few years, and it was awesome! Have you checked with the school district for services? Legally, if you have concerns, they *have* to evaluate him and make sure that he is meeting his milestones (sometimes, even when the kiddos seem fine as far as development goes, there can be some delays), and will be ready to function in a classroom. It might be worth checking into!
    Good luck, Mama!

  63. Girl from Pennsylvania says:

    I haven't been reading for long, but I wanted to pass along an awesome blog. http://www.amalah.com She is absolutely hilarious and her four year old son has SPD and a few other things that I am not completely sure about. She has blogged so openly and honestly about it and I am sure that there are probably dozens of posts that may help you. I hope that this helps.

  64. Goodwin Family says:

    So I didn't read through a;; 62 comments before me, so maybe I'm being redundant, but there's lots of good sensory books out there. "The Out of Sync Child" is one I recommend to families I work with. There's also another one called "Too loud, too bright, too…" something like that anyway. Is he sensory defensive? Or does he seek sensations? Have you looked into private occupational therapy? Check to see if your insurance would help. An OT can help set up a "sensory diet" (no not food diet, a diet to "feed" his sensory system) so that his sensory needs are getting met and he can be at a comfortable equilibrium. Feel free to email me if you have any more questions. kimbersuu at yahoo dot com

  65. Goodwin Family says:

    http://www.beyondplay.com is a catalog that has LOTS of sensory type toys and activities you can order…some luck pretty fun! :)

  66. valentinegirl says:

    My son has autism and has some sensory quirks as well. There is no way that you should have to wait long to get an evaluation. Any pediatric occupational therapy group should be able to get an eval done and start doing sensory based OT. I would google pediatric OT and your town and see what you come up with. Best wishes and hang in there. Also, have you seen a developmental pediatrician. Not to be too nosey, but if your child has any language or social problems, you may want to consider that your child has an Autism spectrum disorder(ASD). Even if your son is not on the spectrum, local Autism support groups may be able to help you find resources for evaluation and therapy—again google it for your town.

    Also google sensory diet–a sensory diet is just a series of sensory input things that can help your child regulate himself. Things like jumping on a mini-tramp, wearing pressure garments, weighted blankets, ect…

  67. Dorrie says:

    What everyone above has said is true early intervention will be both your and his saving grace. I too have a son who falls on the Autistic Spectrum and emotional breakdowns were very much a part of his young years~he's 11 now and the outburst have all but stopped. It takes work, time, more love than you can muster, and dedication to the wonderful child you brought into this world. There is help available~call your local school district for referrals, pediatrician, and check through the support group listing~attend a meeting you'll find a great deal of help there. I'm so sorry for the mean lady in the store, there needs to be more empathy in the world. Hugs and my best thoughts are with you.

  68. Lesley says:

    Hi, I stumbled across your blog (because I like all the 'crap you make', haha) and I saw this post. I have a 4 year old who has a significant hearing loss and is also in a constant state of testing for everything else out there from Autism to diagnosis I have never even heard of. It seems there is always something going on with him. The comment of how he makes you laugh until you cry is the exact same way I feel about my sweet Collin! So I kept reading and I was able to relate to most of what you said. I also started a blog a couple years ago about him, mostly it was cheap therapy, :) but two I felt I needed people to understand "this is just how he is". On the outside you wouldn't know anything is going on, unless you witness an 'over stimulated' moment in the store and then I too get the looks and comments about a better schedule or more routine or yada yada yada. I have spent many moments crying in my car too!!! Anyhow, I don't have any advice or words of wisdom for you but I sure want to tell you that I understand and there is someone out there praying for you and won't ever judge you!!! Enjoy your sweet boy, he is one blessed little boy to have you as his mother.

  69. ringmaster says:

    hi my son is 9 and has asperger's but long before he was diagnosed with it his was diagnosed with SPD. we have done a listening program by vital links and it did wonders but you really have to stick to it. i would recommend it. the school provides my son with occupational therapy. have you tried taking him to the school district to be evaluated he may qualify for services. i know how expensive therapy can be. we bought a trampoline and have 2 different swings. we have also done the brushing. we try everything and if it doesn't work move on to the next. but what has worked best for us is to follow the same routine in the morning and it gets the day started out right. my son is in gymnastics because it is a cheaper version of OT and swimming….anything that involves deep pressure is very calming to my son. as he gets older he knows what he needs to do to calm himself down or organize his system. we also did something called how does your engine run. they have a website for it if you google it. sorry for the ramble but trying to type before i need to feed these 3 kids of mine. leave me a message if you want anymore info i would be happy to share!!!
    heather

  70. Wow, you really sparked something in all these people to get such responses. I hope they helped. I will never say Paige is a nightmare again..(even though she is)!

    You are the perfect Mom to handle him. You find the humor in everything! GOOD LUCK…we are thinking about you!

  71. hazelmitziandme says:

    You will be stunned at how much the will therapy help. Two years ago my then 6 year old saw an OT for SID. We both grew so much. She learned how to manage herself better, we learned how to help her manage herself better. I personally have been pushed to limits of patience that I never knew I had….You will, as a family grow in the most amazing way because of this…really!

  72. All I wanted to tell you is this: I've been there and (still am) know how it is… and love is what makes it all worth it/better/count/etc… :) Share the love :)

  73. ((((HUG)))) Don't give up hope. My daughter had SID since she was 1and with therapy and working through the out of sync child books she has come so far. She's now in 1st grade and has very little problems. Hang in there and take it one day at a time.

  74. Stefan says:

    There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training – AIT).

    Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.

  75. Mom of three says:

    When my son was 10 months old I knew something was wrong. He was my first (of 3). Everyone told me he was fine. Even the pediatrician. At 19 months old he was put into a county special ed early intervention program for autistic children. Turns out he was not autistic or on the spectrum… he is blind! The reason I had to comment is that through all the programs my son was involved in I met some absolutely wonderful women with special needs children. My best friend has an autistic son the same age as my blind son and we a quite the circus when we went go out shopping with all four of our kids! It really helped when either of our children had a "meltdown" in a store to have that kind of support. You are brave (and smart) to open up in your blog. I wish I had been writing and reading blogs back then. Meet other moms locally that are dealing with this (there are many more than you could imagine out there) and network!!! I cannot stress this enough. You will learn valuable info on local info regarding OT and Speech and all the other services (including the not so good therapists). I went from crying everyday to being the mom that will approach other moms in the park that may have a child with different needs. I can honestly say I haven't cried about my sons disability in over a year! I even printed up business cards (calling cards, whatever you call them)to hand out. I've made such amazing connections. Oh gosh… I have gone on and on. I hope this helps. Oh, and I love making crap too!

    a friend, Sascha

  76. I have found the book, The Highly Sensitive Child by Elaine Aron very very helpful. : )

  77. Rachelle says:

    You have my hugs! You know that my sweet Camden has the same thing. He too has not been treated by the school district because he is too "educationally advanced." We haven't sought treatment because we are too poor. LOL! So we just do research and create a sensory diet of our own. If you want somebody to talk to or information on what we have found works for Cam, let me know. Prayers to your family.

  78. Cory Jill Syd and Brenna says:

    A friend sent me a link to this post. My little girl is 4 (5 this summer) and has SPD and anxiety. She was diagnosed just as she turned 3. She had a summer FULL of OT including the listening program at home. Both were lifesavers. Then she started preschool. Also life-changing for her. I wrote a long letter to her teachers explaining what we knew, offering suggestions for potential trouble spots and was very involved in her classroom. She did great. She is now at the end of her 2nd year of preschool and is reading. Kindergarten scares the crap out of me, for next year, but I know that with her mom to advocate for her, she will go places in life. Hang in there! IT's a wild, but ultimately fulfilling ride.
    My blog is http://www.bloomon.net I've had quite a few posts much like yours over the last couple of years.
    Hope all this helps. Hugs,
    Jill

    Here are some good links…
    http://www.sensorysmarts.com
    http://www.sensory-processing-disorder.com
    www. spdfoundation.net

    Books –
    Raising A Sensory Smart Child by Biel and Peske
    Out of Sync Child
    Out of Sync Child Has Fun
    Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Jane Miller and Doris Fuller
    Answers to Questions Teachers ask about Sensory INtegration by Jane Koomar
    Parenting a Child with Sensory Processing Disorder by Christopher Auer

  79. The Schaefers says:

    Our son was diagnosed with SPD at 18 months. We did the local Birth-3 program for occupational therapy and other therapies he needed. He has since been diagnosed with PDD-NOS and is very high functioning, but now that is he almost 3, he will not be in the birth-3 program. We had he referred for preschool through the school district where he'll receive all of his services for free. I would look into your school district for preschool to see what services he'd qualify for.
    Also, the OT did the brushing technique, the sensory toothbrush, the deep compressions as mentioned above. She also makes him wear weights around his arms and legs for an hour on and off all day, especially if we go somewhere in public to help him focus. We also have to swing him upside down and like an airplane (which he hates!) since he can't process in those positions. She does a "sensory sandbox" full of noodles and fun toys to play with. Play-Doh is also great, shaving cream, etc.
    Books we liked are the "Out of Sync Child" and "Raising a Sensory Smart Child." They give good tips to do your own therapy while you are waiting.
    Good luck! Boys are tough to focus anyway, especially with SPD! Just be consistant with what works for him.

  80. Josh, Lindsie, and Ava says:

    My daughter was never diagnosed with a specific sensory disorder, but she was diagnosed with low muscle tone and with that came A LOT of sensory issues. We have done two separate listening programs multiple times and have LOVED them and seen a lot of success in using them. She also has an occupational therapist who taught us brushing techniques and joint compressions. She also encouraged us to use a sensory box as well as having her wear a back pack with weight in it to help her understand where she is in space. It has been an amazing experience and we have also learned that there are just some things that will always really bother her and that is just part of who she is and rather than changing it we just go with it. She hates socks so she rarely wears them and we just decided its not worth the fight. Thank you for asking this question. I have loved reading all of the responses and have a few new things I am excited to look into as well.

  81. Spiral Dyed Downunder says:

    Hi, just found your blog and read about your little boy. I have a 9yr old girl with a similar condition, but not the same. Hers is an anxiety that prevents her from eating when it is bad. We spent part of last yr in hospital just medically stabilizing her weight. Some babies are born with ultra sensitive neural pathways, and filters that don't filter out the 'junk'. This my daughter's problem, and your little boys. His world will be scarey and overwhelming I am sure. So no wonder he is challenged just living in our world. We have been in therapy for over 18 months, but the best help Belle has received was from my own self education. I highly recommend
    The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (James H. Silberman Books) by Norman Doidge. It explains the function of that part of the brain that doesn't filter and also gives you the most up to date treatments. You have a computer program called Fast Forward developed in the US for purchase which has had amazing results on kids the same as your son. Check it out. The main thing I learned is to ask for help, because I couldn't manage Belle with out others chipping in. Most days now are good, some are awful, but most are good and I believe that these kids will ultimately be stronger because they have faced challenges early in life and they do overcome.

  82. Great site you have got here.. It’s difficult to find quality writing like yours these days. I truly appreciate people like you! Take care!!

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