Once upon a time I wrote this blog. I wrote this blog under the guise of wanting to help parents of children with special needs. Most specifically sensory processing disorder, but also tic disorders, severe food allergies, environmental allergies and asthma. I also included spectrum disorders, because “They” were trying to place my child there.
I say “under the guise” because my true intent was not only to share information, but also to shake some sense into parents. I was completely blown away by the lack of advocacy I saw by other parents towards their children. I was bombarded by questions like these: “Well what if the pediatrician doesn’t think he needs to be tested?” “Well what if the school doesn’t think he needs an IEP” “My child is exhibiting this behavior but my friend says that’s normal” “Well do you really think he needs to take his epi-pens with him everywhere?” I just wanted to shake these people and yell “IF YOU WON’T STICK UP FOR YOUR KID WHO WILL??” My feeling was and has always been, no one knows a child better than his mom. If you think there is an issue, than don’t shut-up until somebody does something!
Then there was the flip-side, the parents who had the diagnosis, complete with instructions and didn’t do any of the work at home that the therapists asked them to 
do. Your child is SUFFERING and you hold the key! Get off of your lazy butt and help your child. My son’s therapist said he needed to do Therapeutic Listening that involved special headphones that cost $250 and he needed to listen 20 minutes 2x a day, I did it. The therapist said he needed to do heavy work, I did it. The therapist said you need to do the Wilbarger Brushing Technique at least 4 times a day, I did it. The therapist said, he really seems to be benefiting from this platform swing, I bought one. They said, wrap him, let him be in closed spaces, desensitize him by having him play in rice, or beans, have him finger paint, continue to introduce new foods. I DID IT!
I don’t want your applause, I don’t need it. I have every single ounce of congratulations I need by looking at my son now. He was diagnosed at 2 1/2, because I advocated for him. He is 7 and shows very little symptoms now. He is a success story because I did what I was told.
Then there’s the middle. The parents who are TERRIFIED by this diagnosis. They are frozen – like a deer in headlights. My purpose for them was two-fold, I wanted them to see it could be done, and that they would see results if they followed the instructions from their therapist. I also wanted to shake them and say, “It is not about you. Stop feeling sorry for yourself and get moving, the sooner you wake up and start the process, the sooner you will see results.”
So that was it. That was why I started this blog. Admittedly, I write less and less about actual SPD now, because we are not in the throws of it, the entertainment factor of a gifted child with special needs is more interesting.
The last addition to the list of issues was a Large Movement Tic Disorder. This by far was the scariest thing we have dealt with. It was so scary I barely blogged about it. I didn’t want to think about it more than I had to, BUT I did advocate for him. I was told by his pediatrician, when this appeared at 4 1/2, that tic disorders were common in boys from 6-10 so I shouldn’t worry. I said OK, but he’s 4! He said “don’t worry”. That was not an acceptable statement to me. My son had a very uncommon type of tic, one that is more commonly associated with Tourette’s, although it wasn’t Tourette’s, called dystonia. I was freaked out, so I advocated and 
found the right doctor, someone who would advocate for me. Although there was a 7 month waiting list to see the head of pediatric neurology, he pulled strings and got me in in 2 months. All because I would not let up. This doctor said to me “When a mom think’s there is something wrong, I always listen.” If your doctor doesn’t feel like that, get a new doctor.
He still has this tic, we now see a neurologist every 6 months. I am lucky, Isaiah loves him, they both wear bow ties. I picked the Dr’s brain, it turns out there is a short-circuit in Isaiah’s basal ganglia, the most mysterious part of the brain. You know what? I didn’t just accept that; I researched the heck out of it, and asked a million questions before accepting it. BECAUSE I AM HIS ONLY ADVOCATE. Does the tic still scare me? Yes. Do I hide from Isaiah that I’m scared? Yes. Technically should I be scared? No. The basal ganglia is the least understood part of the brain, and because of that they know very little about tics. Just enough to know it might go away, it might not, it might be worse sometimes and gone for long periods of 
time, then come back. They also know it won’t kill him and he doesn’t have a brain tumor. That’s enough for me.
And now to the fun.
All of these things make him who he is. I always hear: You’re such a great mom, I could never do that, I’d be worried and scared all the time, or how do you do it? You could all do it. Because all it takes is love.
When Isaiah was little we used to call him “Monk” like the TV show about the OCD detective. He exhibited signs of OCD, “they” wanted to diagnosis him with OCD. It turned out it was just a manifestation of his Sensory Processing Disorder (SPD). Anyway, like Monk used to say, “It’s a blessing……and a curse.” I think it’s more like a blessing. This kid is unique to the core. He is anything but boring, or typical. He doesn’t like anything other kids like, he has no problem carrying on conversations with adults, his vocabulary is bigger than most adults, his imagination is so extreme that I wouldn’t be surprised if he actually takes over the world.
Everyone who meets him is so impressed by him that the most frequent comment I hear is “he is definitely going to be famous one day.” He has no desire to be famous. Unless it’s for taking over the world.
That’s the other thing. Life is funny now. Sometimes there’s still some hard parts. Sometimes he gets so wound up he can’t wind down, it’s infrequent, but there are still those rare moments that I have to hold him down and remind him to be still. Sometimes he doesn’t want to touch something “icky” but he will at least try. Maybe he doesn’t want to eat something slimy, but he’ll at least touch it with his tongue. And more than sometimes he is much louder than he should be. Apparently the hardest part of SPD to tackle is the Auditory part. I post about that here. But for the most part, he’s funny all day long. Not funny silly, more the funny that comes because I am incredulous that those words just came out of his mouth. Even before blogging I kept a notebook of everything he said. I had people who followed me on Facebook just to see his comments and videos. There are videos people.
I don’t know if I made my point, but I know what it was. The point is, I am more likely to post now about my amazing, funny, smart boy who now has only mild SPD that will probably be with him the rest of his life. But that’s OK. He is awesome, he was taught the coping skills he needs to get through most things that hold him up. I learned skills to help
him when he get’s tied up too. So now I get to tell the funny side of life, and if your child has any of the issues that Isaiah has, or if they’re different, the reason why this blog is still a good place for you is because through it, you will see that you can have hope, that life will change, adjust, be wacky and it will all be OK. So continue to join me on this journey, and remember, this kid creating potions to destroy the world wouldn’t have gone near those potions 3 years ago, or walked in the grass, or sand. He wouldn’t have made a mud pie. He wouldn’t have eaten chicken nuggets or Annie’s gummy bunnies and most of the time he was naked, or only wearing his under-wear because his clothes bothered him so much. So take heart. This is still a blog about a boy with Sensory Processing Disorder, but it’s a boy who has learned the skills he needs to function and get through every day with a smile!
Jen Kehl 
Beautiful! Thanks for sharing. 🙂
Thank you 🙂
This is my first visit to your blog; I came from the Honest Mom link-up. What a fantastic post this is! I love your honesty about how much Work has been involved in your son’s therapy, work done by you, because you are the one who is with him day-in, day-out. I hope your blog encourages more moms to trust their instincts about seeking help, but, more than that, about being fully committed to the treatment process. Just getting a label isn’t enough.
Thank you so much! That is exactly what I hope too 🙂
I am a former early intervention teacher of students with special needs. I would have given my left kidney for some more moms like you. I love success stories. I love everything about this. Thank you for sharing, Erin
Thank you! That’s why I am so bossy about it! I get very upset when I see parents just stand by when they could be really making a difference!
You know my son (13) has struggles of his own that aren’t even in the ballpark of your sweet baby, but a mother with a struggling child is a mother with a struggling child, only I can’t share it with my regular readers because when I let his bio dad go to be with his girlfriend I eventually remarried and he adopted my sweet boy and my ex knows my name and I don’t want HIM to know about any of Noah’s problems. Does that make sense? He has no right to know anything; what he looks like, how he sounds, what sports he plays or most of all what he inherited and probably will inherit from me. I’m a little jealous of you.
Awesome post. And WE ADVOCATE.
I’m sorry about your past yuckiness, but I am glad you’re son has you!! We are mom’s first, cause if we didn’t want to be, we shouldn’t have had children, am I right?? Thanks for the love!
Such an honest post. As loving moms, we got to bat for our children, because, hey, that’s what we do. My oldest child was diagnosed with “acute seizures”, something that I my mom said I had when I was younger. And when the doctor said that if she did this and took this, then she would be okay. So, I did. I love your tenacity and spirit. Continue doing what you do. Your son has a wonderful mother in his corner.
It’s so true. When my son’s eczema was so sever he couldn’t sleep unless my husband and I slept on either side of him holding his arms down (so he wouldn’t scratch) my doctor put him on a ton of meds. I was the all natural hippie mom, and I had sworn I would never touch all of these drugs. He looked me in the eye and said “your son is suffering.” That was it. I did it. We are moms.
Hi Jen, just replied to your comment over at my blog. Thanks for sharing your experience with SPD. It looks like your son is doing well and having lots of fun. So important to remember that the diagnosis is part of what makes them who they are, and who they are, is really awesome.
IT is so true. The tic disorder is still really scary, watching your child’s body doing things he can’t control, and then having to pretend you don’t see it, is tough. But he is so awesome, sometimes when he does something annoying, like bang the dog with the remote, he says “it was my tic”. Wacko.
Ha ha. My son blames things on our dog! Like the painting he stepped in and tracked all over the carpet. Yes, the tic stuff must be scary. Josh has a lot of sensory behaviors that are strange looking to others, but I know he is trying to feel regulated, can be tough to see how others look at it though, especially if it makes other kids uneasy because they don’t understand why he is doing it. Glad to have found your blog!
I am constantly surprised by the similarities I have found in special needs kids. I know I shouldn’t be surprised, but I am raising Isaiah in a vacuum, not the blogosphere. If only there were as many people who understood out in the real world! Ironically Isaiah’s tic has come back full force, yesterday he kept holding his fists up to his chest at the grocery store, at first I didn’t notice, I thought he was fixing his jacket. Then I asked if it was his tic, and he said “yes, but I like it way better than the one that makes me look at everything.” It was really cute, and kind of sad. I felt bad that he had “tic preferences” but that he couldn’t control which one reared it’s ugly head. The admiration is mutual btw!
I loved reading your story here. My son has trouble processing sensory input. Although it’s very mild, we are working hard on getting him to cope better. He definitely hates walking on sand and grass still, but we’ve gotten him to finger paint! A victory to say the least. It was hard to explain to random people in the street, when they said things like, “He should be wearing his hat and gloves!” that they bother him too much. I consistently feel judged for being a bad mother, and it’s frustrating because I shouldn’t have to explain my son’s health issues to strangers. Thank you for sharing this post because parents need to do every activity, buy every toy and advocate fully for their children. It hurts me that there are children who are behind because their parents just don’t care enough.
I completely agree with you. I am ashamed to say, before having children, I often thought, why can’t that mom control her child! After my son was born I knew/swore I would never judge another mother again. You just don’t know what struggles that mom is facing. BUT I do judge the mother who has the help and doesn’t use it, the damage she will do to her child is irrevocable. They say there is a window of opportunity to deal with sensory issues, once you pass that window your only options are to help them cope. p.s. you and my brother-in-law have the same last name!
I read your post earlier today and came back to read it to my husband when he made it home for the day. I little let out a whoop whoop when you wrote, “don’t want your applause, I don’t need it. I have every single ounce of congratulations I need by looking at my son now.” I am so tired of people telling us how amazing we are for not taking no for an answer and being so in tune with our youngest son. It takes so much for me to not ask what in the heck would we do?!!! We made the decision to be parents and I wouldn’t change it for anything. I wish more people could understand where we are coming from….sigh. Anyways, you post was refreshing. Thanks for sharing!
Thank you so much!! I read your post too, we are very alike. I actually do often say “what choice do I have?” when people ask that question, I don’t want to sound callous but really? What do they think I would do? I just can’t resist pushing those parents who are so close to doing the right thing, but somehow get in their own way. So even though I have my funny mom posts, I still have to get back to why I started this blog every once in a while, to remind everyone, not every kid is typical, but that doesn’t make them “different”. Thank you for commenting!
DUDE! You are so bloody awesome (see I already learned swearing here is bad news)! First, I really appreciate you summarizing all of the work you’ve done with Isaiah is really helpful for somebody like me to read. My son is 3 1/2 and we have no clue what’s wrong. SPD? Yes. Severe speech and language delays? Yes. Some stimming? Yes. But classic autism? No. He’s been seen by developmental pediatricians and ITC and Child Find and blah blah blah and nobody knows what to tell us. We were rejected last year for a full neuropsych evaluation and you know what? I’d recently decided to say F them and pay for it myself.
Your post reminds me that I’m his biggest advocate and that if I have to pay $3K to get a freaking eval??? TOTALLY worth it.
By the way, we’re doing a lot of the sensory integration therapy too, and it really seems to help. Like, a lot. Although, my kid still gags every time and vomits sometimes when we brush his teeth. Bah.
And I haven’t heard of the brush thing. What’s that? He brushes stuff or you brush him? We do a thing where we roll a ball on my son pretty hard to calm him. Then, I “tickle” his back (very lightly scratch it) and he melts.
Awesome awesome post. Like always. You totally rock. Seriously. And Isaiah is adorable beyond belief. I think you should pat yourself on the back and pour yourself a huge glass of wine right now because even though you don’t want people to say that you’re bloody awesome and all that jazz (and yes I’d do it to but that’s not the point), still, you ARE awesome. So have some wine. Have a pat on the back. And know that you’ve written on that little boy’s heart in a way that he’ll remember forever. ❤
Oh Obi-wan we are forever linked by our lunacy + special needs + plus our own personal brand of ridiculousness. Thank you. I am glad it helps, please research the Wilbarger Brushing Technique. Click the link and google it some more. It made such an amazing difference. You do the brushing, you use basically a corn scrubbing brush, it’s super soft, and you brush their limbs and their back, hands and feet. No stomach no face. Seriously my kid WOULD NOT SLEEP and he slept the first night I did it. They say you have to do it every 90 minutes, maybe for some kids, I did it 3 or 4 times a day. Any therapist worth their salt should know about it. I found out that some therapists don’t recommend it because it is so labor intensive they don’t think the parent will do it. What a load! But….that being said, that is what my post is about. So check it out. I almost did a video myself, I am sure I did another post on it, but I can’t remember….. oh wait a parent contacted me and I sent her a detailed email. I’ll look for it.
GET THE EVAL! Luckily our insurance did cover it, but the first pediatrician (who was my 3rd pediatrician) didn’t think we needed to do anything!
Here’s the shortlist pediatrician one didn’t believe me when I came in saying I thought he had food allergies at 9 months, later that day he was projectile vomiting and covered head to toe in hives, we wound up at Children’s Memorial with a laundry list of food allergies.
Pediatrician 2 did not believe he had sensory issues even though he vomited every time I tried to feed him anything more substantial than level 1 baby food at 24 months.
Pediatrician 3 did not believe his tic was a problem
Pediatrician 4 rocks like woodstock 🙂
ADVOCATE! Do what you think is right. My deal was, I never accepted “we don’t know” as an answer. I know it’s hard, your situation seems extremely difficult, and for that I am sorry. But of course I still think my way is the right way. Don’t accept we don’t know, see every specialist, neurologist whomever. Get the answers you need! I know it’s expensive, to be honest, and honestly this all brought us to financial ruin. BUT I would do it all over again.
Now for the Sangria. Isaiah was playing waiter tonight (with himself as waiter and patron) as waiter he said “here is your sangria sir, I know you always take it with your dinner.” I WISH!
Hahahah to the awesome waiter you’ve created. Now if he can serve real sangria, or even something stronger, I say you’re developing life skills. And I totally get what you’re saying about the allergies. My son is VERY allergic to cashews and probably peanuts and probably all tree nuts. The allergist explained that at a young age (I think he was 18 months when hubs fed him a cashew and he blew up on the spot) that histamines increase and so other allergies wouldn’t become apparent until later. Regardless, we carry epi-pens everywhere and his school has instructions to use them if questioned at all. It’s because of him that his classes are nut-free. With that said, he still has some unknown allergy that is much worse when he’s sick. He gets these awful rashes on his face and nobody knows what they’re from. Again, total advocacy here because his doctor, the allergist and everybody else told us to wait and see. Sorry, but I don’t want him dead to find out what he was allergic to. So about 2 weeks ago, I put in the forms (x100 papers x gagillion) to get him the full blood test. A no brainer if you ask me. Doh.
Okay, I’m sure I’m forgetting stuff but you are RIGHT we do need answers. And you are right that this blog can’t always be about about your sweet son’s issues. You have to just be you. And make it what it already is times a million. People will come. All of them.
retrieved you from the spam filter. again. yes my son can be quite an entertainer, he also wakes up yelling at me EVERY morning, and says he wouldn’t do it if I would be nicer to him. Oh sweetie, should I have gotten down on my hands and knees when asking if you wanted some chocolate milk? maybe brought you a silver tea service?
YES on the testing. By the time they are 2 you should test for EVERYTHING food and environmental. They are doing both right? We actually have our order on the fridge, because we get it done yearly now. Some go up, some go down. Well actually only egg is going down, but that’s something. Watch out for sesame, it’s the newest big one. He had a reaction last year, when we tested him his levels were off the charts. Apparently peanuts + treenuts = 80% greater chance of sesame. Who knew? Also Isaiah get’s rashy from being sick, I think it’s more the eczema than anything. But he also get’s hives when he’s too warm and hives when he’s too cold (that is called cold urticaria, it can also be deadly and requires epi-pens).
So, thanks for the constant encouragement, glad you’re on my side 🙂 And if you need anyone to remind you who’s butt to kick to get some answers, you come to me!
I was a teacher of students with special needs, and I’ve met ALL of the parents you have described! The most disheartening ones were the ones who blamed their kids for their issues and then wouldn’t “do the work” (like you described)….”he just won’t listen”, or “she’s just lazy”. I wanted to pull my hair out. The truth is that there are solutions! It’s impossible to make them happen without parents on board!
I remember after reading “The Out-of-sync Child” I just started sobbing, I thought of all the times I got angry at him when he wouldn’t walk in the mall, and made me carry him, or when he wouldn’t participate at a birthday party or a music class and just stood in the corner, so many things. I never realized he was suffering, and I thank God that I figured it out while he was still young and we could do something about it. He still won’t participate at most birthday parties, unless he has plenty of time to warm up, and most moms just don’t get it. They see him one on one and his is the MOST outgoing, active, wacky child. But add a little noise and commotion and he just shuts down. But now I have compassion and I know it’s not his fault.
Great post! I feel the same way. My son doesn’t have SPD, but he does have ADD & what doctors call global delays. But don’t be fooled. He is the absolute smartest, funniest kid I know. He had a lot of catching up to do when he came home at 3 & 1/2 from Russia. And he did it. He is now in General Education w/ his peers in his grade. But I was the one to meet with every freaking doctor & specialist & school early intervention program. I was the one that fought the school and found resources. I was the one to take him for private testing when I didn’t believe the school’s assessment. I was the one doing speech homework & PT homework & running a little summer school for him. I was the one who fought to get him into special ed. & then fought to get him out when I realized it was no more than romper room. And whenever anyone says you’re a good mom I think, “yes, I am, but who wouldn’t do this for their kid?” The sad thing is a lot of ppl. But I felt as you did, if I don’t advocate for him who will? (Oh, and I voted for you too!)
I love to hear that! I am seriously blown away by the amount of parents that think it’s the schools responsibility to “fix” their child. First of all their child doesn’t need to fixed, and second of all WHO’S THE PARENT? Who can your kids count on, if not you!
Thank you for sharing, LOVE IT!
(Sorry if this shows up twice. I couldn’t tell if it posted.)
“I just wanted to shake these people and yell ‘IF YOU WON’T STICK UP FOR YOUR KID WHO WILL??’”
“If you think there is an issue, than don’t shut-up until somebody does something!”
YES, YES, AND YES, although I’d like you to know that I’m more than willing to stick up for anyone who needs it, whether I know a darn thing about them or not! 😀 If only more people were like that.
“Your child is SUFFERING and you hold the key! Get off of your lazy butt and help your child.”
SO true. Unfortunately, my mom had several problems (SPD, ADHD, and some others) standing in her way of doing that quite sufficiently enough, but she sure did try her best and accomplish ten times more than ten average parents without neurological problems combined. I’m eternally grateful for all she did manage, which was a whole lot. If she could do that despite having a lot of the same things that were causing my problems, what on earth are other parents’ excuses!? In a lot of cases, it seems to go beyond laziness to downright callousness or even sadism!
I am SO happy for your son that he got diagnosed so young. He is a lucky, lucky boy, both for the diagnosis and for having such a bold, proactive, ACCEPTING mother.
Sure, society might write people like my mom, you, and me off as loud, bossy, and obnoxious, but very little progress would me made without us!
Never lose your spunk!
Thank you for your awesome comments! Please come back again!
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