He squints constantly. Especially when he's talking. Like blinking to the extreme.
He's eating all forms of paper. Paper, cardboard, his flash cards, books. Eating it. As in shitting paper, eating it. His pediatrician and speech therapist suggest "firmly reminding him that it's not food." Really?! Like I wouldn't have thought of that on my own or already be doing that...because after four kids and 14 years of mothering, I would have NEVER guessed to try that idea. Fucking idiots. NOT WORKING.
Food is a challenge. "PICKY" is a super understatement. He eats the following: chocolate milk, orange juice, apple juice, waffles, pancakes, chicken, potatoes (mashed, fried, baked), rice, chicken noodle soup, yogurt, pudding, bananas, apples, and bread. Sometimes... cheese. Rarely--oreos, vanilla ice cream, popsicle, teddy grahams (honey). He's a food Nazi. I supplement with Pedia-sure and liquid vitamins to make sure that he's not undernourished.
He refuses to wear shoes. About 98% of the time. And then...only crocs, which is FINE! But it's a fucking war to convince him to put those on. He doesn't like socks either. HATES them.
He hates any clothing but what is made out of knit cotton jersey and it better be soft and tagless and SOFT. Did I say soft? Because he will let you know in a heartbeat. It's itchy. Or makes him sweaty. Or it hurts.
Getting a haircut hurts him. What. The. Fuck.
Normal sounds hurt him. As in the sound of people talking... if there are more than 2 people in the room. He curls up in the fetal position, puts his fingers in his ears and screams bloody murder.
When he's nervous or worked up, he chews on his lips until he's bleeding and even then doesn't stop.
He scratches and claws at his own skin until it's red and sometimes bloody.
He sleeps sporadically and not on a normal schedule.
The only way to calm him if he's worked up is to put him in the water. Bath, shower, pool, ocean, even washing his hands...water soothes him. There are times when he stays in the bath or shower for and hour and a half but it works. There have been nights, we've gotten in the bath together at midnight, just to calm him down when the pajamas or sheets and blankets or the bed or something didn't feel right and he got worked up, so I could "reset" him.
I am so tired. And frustrated and angry and sad and grieving. A year ago, I had a beautiful little boy who didn't go through all of this shit and he just couldn't talk. Now I have a 4 year old little boy who is still heartbreakingly beautiful but his body fucking hates the environment around him and I don't know what to do.
I'm angry. So angry. I don't want this. I don't. I just don't.
I don't know what to do now.
How do I help him?
Logging you in...
MOMmetime · 728 weeks ago
Not only is it difficult to set-up therapies but its even more difficult to find a doctor who understands or has the experience to help (like the suggestion made by your son's pediatrician and speech therapist to firmly suggest... oh okay) this has been a major problem for me as well. I've fired doctors, screamed, written complaint letters, made demands, borderline harassed until finally I was able to find 2 therapist that I LOVE and a GI Doctor (yep, believe it a Pediatric GI Doctor that has helped my daughter and helps me to help her! To say that It is painful, tiring, push you to your fucking limit just to kick you one more time... is an UNDERSTATEMENT!
Here are a few things that have helped us (just a side note IT is not easy in the beginning but not as painful as the alternative ~well most days anyway) The good news: after doing this stuff our lives improved!
1. I had to let go of the food stuff...HARD.HARD.HARD. I focused on preparing her foods that she liked or physically able to tolerate and *slowly introduced foods that caused her trauma. In the past, I thought if I 'FIRMLY' suggested, continued feeding up to 10x's, begging, pleading, that magically doing the same thing over and over again would make her 'change'. I finally accepted it and moved on!
*the only time I introduced what I refer to as trauma food was in front of the TV while she watched her favorite show. Her main issue was with wet foods so I would put foods she liked on a plate along with soup, ice-cream or whatever other trauma food and then put a very small amount of it on her lip, if she was so preoccupied with her favorite show I would let it set there on her lip until she either had a fit or I was able to move a bite into her mouth. It took awhile and a lot of TV but today she will eat just about anything. She will let me brush her teeth without problems (even floss) and go to the dentist...this is nothing short of a MIRACLE!
2. I try to only buy brands that do not put tags in the clothes. I use detergent for sensitive skin and softener (and remind myself regularly that this is one of her necessities and try to the best of my ability to accept it ~but I don't like it dammit and when she demands tag removal of all things that might come into contact with her skin I just do it).
3. Physical Therapist, Occupational Therapist and Speech Therapist. Some States (like the one I'm in Georgia - I presume you're in the States) will offer Public School resources as early as 4 years old. Check with you local Elementary School and find out if you can use there resources. If not email me @ mommetime@ymail.com and I will ask my daughters OT for some printouts that may help you until you are able to get a fucking appointment (that drove me bonkers!!)
4. I was about to say I'm shocked your Pediatrician did not inquire more into the 'eating paper', but very little shocks me... the first thing I thought about was maybe his body is craving a nutrient and he eats paper and continues to eat it...not that paper has any nutrients but maybe. So, I googled it ~yep, not as uncommon as you might think...Have the Pediatrician check his blood for iron deficiency...also check this out: http://kidshealth.org/parent/emotions/behavior/pi...
Okay, now I'm tired...I think if I was to continue I would probably start speaking gibberish. I hope you can make sense of all this. I was going to wait until later in the day to respond but felt compelled to do it NOW...Oh, part of me just wants to track you down and give you a hug! Sigh. (((hugs))). deep breath. Please contact me if you have any questions... and if I think of anything else I will let you know. Take care of yourself...
My recent post A boy name KYLE
RussellisNLQ 72p · 728 weeks ago
My recent post She- Or the other half of the coin
Claire · 728 weeks ago
My recent post Inclusion in schoolsa perspective
Amanda · 728 weeks ago
As for the Crocs, I'd just go with it, and for cold weather, get the fuzzy lined ones if he'll wear them. Crocs are our bestest friends. I used to DREAD gym days when my kid NEEDED to wear sneakers (before dx and accomodations).
I'm probably the wrong parent to ask about the food thing. My 9yo was a lot like you son. I just went with it. I had too many friends that ended up with eating disorders from being forced to eat when we were kids. I was so afraid that's what would happen to mine. By the time he was 8, he started branching out and trying new stuff. At one point, we went 9 months where all he ate was Gerber baby oatmeal, bananas, and applesauce. We've also been through other food phases, and I assure you he's perfectly healthy now. What I do is make the kids what they like, but I always offer what we're eating. Sometimes they try it and sometimes they even like it. Food just isn't one of my battles as long as they're growing and thriving.
Sleep - we've found that the melatonin with vitamin B from GNC works better than straight melatonin. Our 4yo needed a script to sleep, but melatonin has been enough for my 9yo.
For the sounds, maybe one of those tiny ipods with headphones so he can listen to sounds he likes set to a volume he likes?
That's all I've got. I wish I had more to offer. (((HUGS))) And don't forget to take time for YOU.
My recent post Back to Our Regular Programming
Michel · 728 weeks ago
The food is a battle for another day.
The clothes thing. Could it be the seams in the clothes that are bothering him especially in socks? There are special clothing for kids with SPD. FunandFunction.com has some and there are other websites you can search for tagless and seamless clothing that might help. You might have to wash the clothes a bunch of times to get it to the level that he wants too.
The sounds of people talking, he might benefit from noise reducing headphones. I know there are days when my daughter doesn't want anyone talking to her because our voices are like nails on a chalk board. In those instances we refrain from talking closely to her.
I don't know about the clawing his skin, but maybe his soap he uses makes it difficult for him. Kids with sensory issues can be highly effected by smells, tastes, changes in the barometric pressure. So many things we wouldn't even think of and it stresses them out and thats how they can deal with it.
Our OT just suggested swim lessons for our daughter because the pressure of the water is soothing to kids with sensory issues. It calms them down. So water therapy might just help your son.
I think at your son's age he should qualify for early childhood preschool in your school district. If you've had him evaluated and he qualified they had to provide services to him even if you don't send him to the public school. * This is how it is in my state of IL. I don't know where you live. In our state it starts at 3, once the kids age out of the Early Intervention system here.
This blog might be able to help you: http://www.spdbloggernetwork.com/
I hope some of us have been able to help you.
My recent post Hot Sweaty Shamrock Shuffle
Michel · 728 weeks ago
My recent post Hot Sweaty Shamrock Shuffle
Heidi · 728 weeks ago
My only other suggestion is to work on one thing at a time (until you see the OT and they suggest other ideas). Try not to change too much in one go. Figure out what is most important to you and work only on that until you are happy to add more.
Rachel · 728 weeks ago
Don't forget us autistic people -- especially those of us with SPD. We have first-hand knowledge, from the inside out, and some of us have lived with this stuff for decades and managed to work around it.
Here are some ideas:
1) Someone else has already suggested a weighted blanket; I second that suggestion wholeheartedly.
2) Joint compressions are a good thing for your child to do, especially when he is dysregulated -- pushing his palms against each other, grasping his hands together and pulling, etc. Joint compressions are very, very calming, and it's why people will autism/SPD toe walk and hand flap.
3) He may be chewing paper in order to create joint compressions with his jaw; the mouth is the most powerful place to do joint compressions, because the relaxation effect is communicated most easily throughout the body. I find that when I am really overstimulated, I will eat something that I have to chew a lot in order to break down. I've never eaten paper, but I can relate to why someone might.
4) In general, sensory sensitivities increase anxiety, which in turn increases the sensitivities, and you get a feedback loop. So anything you can do to give his senses a rest, do it. My auditory system is especially godawful sensitive, so I wear earplugs a lot, and I will even wear noiseblocking headphones if the environment is particularly loud. Since I've started doing that, my anxiety has gone down considerably, and my other senses are far more regulated, because I'm not completely exhausting myself trying to process sound, and I'm not in a constant state of anxiety about what is going to assault my senses next. If you reduce the amount of sensory stimulation, your child may stop scratching his face and biting his lip out of anxiety.
5) Therapeutic brushing can work for some kids, but not for others. I would be careful about trying it on your own; it can sometimes inflame sensitivities if it's not done correctly.
6) Consider using melatonin to help your child sleep. My sleep has always been terrible, and the melatonin is a gentle way to help regulate my sleep without the use of pharmaceuticals, some of which can interfere with sensory processing.
7) If you're having difficulty finding an OT at the moment, consider signing your child up for horse-assisted therapy. It can have a major impact on sensory issues, and builds trust and confidence as well.
8) I wouldn't get too concerned about the food thing. My NT daughter was extremely picky and ate very little in her early years. Trust me when I say that when she was your son's age, he would look like a gourmand next to her. She's now 18 and perfectly healthy -- and still a picky eater. It's just how some kids are.
Feel free to email me at rachel@journeyswithautism.com if you want to ask any questions or get support. I'm happy to help.
My recent post Guest Post Series- Widening the Disability Perspective
jillsmo 103p · 728 weeks ago
Rachel · 728 weeks ago
Whatever you need. I'm here for you. :-)
My recent post Guest Post Series- Widening the Disability Perspective
jillsmo 103p · 728 weeks ago
nuttydingo 56p · 728 weeks ago
My recent post Flat Flannery
Brayden's Mom · 728 weeks ago
So sorry to hear about your little guy! I know it can be difficult for us mommies too when we want to help our kiddos and just can't seem to find a way to do it. My son is 6 and autistic, but his sensory issues are rough for him too, though they have greatly improved since diagnosis. Here are a few thoughts/suggestions I wanted to share:
1. Blinking - would he be able to tolerate sunglasses? Sometimes light can just seem to be too much, or even many bright colors. Maybe sunglasses would help him.
(long message - had to break it up into multiple posts)
Brayden's Mom · 728 weeks ago
continued below
Brayden's Mom · 728 weeks ago
4. Chewing on his lip - maybe he has an oral sensory need that isn't being met and uses his lip. My son has chewing needs from time to time and we use this little thing called a z-vibe. It has a chewy end and also vibrates. Of course there are several different types of oral sensory items. Here's a link to some: https://store.schoolspecialtyonline.net/OA_HTML/i...
continued below
Brayden's Mom · 728 weeks ago
continued below
Brayden's Mom · 728 weeks ago
I hope that you find some of this information helpful. I know it can seem overwhelming, but just as Heidi mentioned, work on one thing at a time. ((HUGS))
lhand0124 49p · 728 weeks ago
1) Food thing: I agree with everyone else. Supplement with PediaSure like you're doing and let it go. It's not a winnable battle, and study after study has shown that, generally speaking it'll all be just fine.
2) The paper thing: For me it was iron deficiency, so the commenter that suggested that might be on the right path. On the other hand, my son has always chewed and eaten all kinds of crazy shit. Most notably, strings and lint. I don't fucking know why, but if I'd known about chewable jewelry back then, I'd have tried it. He fucking chewed and ate everything. Ugh!
3) The clothes. That sucks when it's so tough for them like that. My daughter has to have tagless and soft as well, but it doesn't sound like she's AS affected as your son. Old Navy, and also there's a place online called Teres Kids that makes a line of clothing specifically for Sensory Sensitive Kids. No tags..and I believe mostly cotton jersey material.
3) Shoes and socks. That's a tough one. My daughter and I both prefer to be barefoot, but I hate having cold feet more. Yeah, I think I'm useless on this one.
4) Sound. My daughter and I both have sound issues. For me it's a frequency (how hight/low) and volume . For my daughter it's more sudden and volume. We've done noise canceling headphones, ear muffs, and sometimes just removing her from the situation if possible. This will take work with a professional. Is he still non-verbal? Because I think some of the fetal position thing is not knowing how to help himself in the situation, which I think comes with age. But I'm not a doctor and I don't play one on TV.
5) The hair thing? My daughter has NEVER in 6 + years of life had a haircut. She hates to have it brushed, or washed. And the washing it's a combination of not liking the feeling of the water running over her head, and not liking the sound of water running into her ears. SHE LOVES THE WATER, just not coming over her head. I know he's a boy and all, but since he's only 4 and there are other "more pressing" matters. I would let this go. Most boys have long hair now-a-days anyway, and like I said. Bigger fish to fry right now, we can come back to this one.
6) I chew my lips to the point of bleeding still to this day. So fucking bad. The chewable jewelry might help with this one too.
7) Squinting. My son is SUPER sensitive to light, and always has been. We call him Cave Boy. Have you tried having him rock the "Sunglasses At Night" look, or inside or whatever. Also, it could be, as opposed to light sensitivity, visual perception. A lot of Aspies/Auties blink, side glance, flick their fingers in front of their eyes etc. My daughter used to squint while flicking her fingers in front of her eyes. I don't get it, she just did it. Something about the way things look.
8) Scratching and clawing at his skin. Coleman used to do that too. But it was usually in frustration. At those moments, we would put him in the water if possible. Joint pressure, and weighted blankets might help with this. I'm pretty useless here too.
9) Water play is a commonly soothing thing for Aspies/Auties. Coleman used to go in the bathroom and turn the faucet on and let the water just run through his fingers. I will stay in the shower until I'm OUT of hot water. And I like the water MUCH hotter than the average bear. IDK..it just feels good.
10) Sleeping is a problem for a lot of us. My daughter still pretty much comes in our bed every night. Both of the kids get Melatonin to help them get to sleep. I never tried combining it with Vitamin B. I might try that to see if it'll help Julia sleep through. Weighted blankets help a LOT of kids sleeping issues. Definitely worth a try. Along with Melatonin or medication to help him get to sleep.
11) Finally, if you haven't read it yet, I recommend reading The Out of Sync Child.. very helpful...also there's a LOT of help to be had over at the SPD Blogger Network. www.spdbloggernetwork.com ... and if you're in GA or TN I can recommend the world's best Developmental Pediatrician to help coordinate what he needs and whom will provide it.
That's really long. But I hope it helps. (((hugs))) It doesn't seem like it now, but it really, really does get easier. And weirder. definitely weirder. :-)
My recent post Getting Unstuck…
Dani G · 728 weeks ago
The work we've done in occupational therapy, especially therapeutic listening has helped a lot. Also, as her system matures (with time), I see a lot of improvement. Hang in there!
My recent post Nothing Gold Can Stay
akbutler 65p · 728 weeks ago
Everyone has great suggestions above, including checking out the www.spdbloggernetwork.com. There are resources and tips and info and a community of parents going through just what you are.
I'll go quickly through what we do, but know that EVERY child with SPD is different and will react differently. Don't give up just because one thing didn't work.
Sleep - an issue for us from day one. Melatonin saved our lives and sanity. He also sleeps with a weighted blanket and 5 covers.
Clothing - I have let it go. My son sleeps in soft long sleeve cotton pjs even in the middle of summer. Soft Clothing and places like that have great clothes for kids like ours. They make seamless socks too.
Haircut - it took us a long time for my son to not be afraid of the clippers. Our school told many of us to take it slow. One day, just turn them on, no haircut. Next time (a few days later), let them hold it (the vibrating is calming). Next time, just hold it to his head, no cutting. It seems like an extraordinairly long process, but it worked.
Food - we just let it go. My son eats 5 things. Total. He likes yogurt so I let him eat as much of that as he wants. But if it doesn't look right or smell right, forget it. Our pedi told us that as long as he was growing (which he is...slowly) not to worry about it. If you can stand it, you might want to have allergy testing done. Somewhere along the road we discovered that our son can't digest ANY corn products. So if he has anything with corn syrup, corn starch, etc, his behavior is off the charts. It's because he feels like crap.. So you might want to make sure there isn't something bothering him that he's eating.
Sounds - we have noise canceling headphones in the car and in the house. Sometimes we parents use them.
And now...for you. You are NOT alone. I am angry too. I have been angry from the first moment I realized that the so called "normal" things that all the other kids do bother my son. BUT...we have learned to get into his world and things are so much better. I gave his teachers a copy of "The Out-of-Sync" child and "The Guide to Sensory Processing Disorder" and they see his troubles and take him out for sensory breaks. I can see the meltdowns before they occur and have learned to redirect his sensory sensitivities into activities he does enjoy. And I have learned that we ALL have sensory issues. But some people have a harder time coping with them than others do. That's your son. And mine. But with time and at the age that they are, they will learn coping strategies to get them through the day.
Keep fighting to get in to see an OT. But most of all, keep being the amazing parent that you are. You will learn from each other. And it will get better.
Feel free to contact me if you want to chat more.
Alysia
My recent post Defying Gravity- volume one
manyhatsmommy 29p · 728 weeks ago
1. My son was greatly helped by a gluten and casein(milk)-free diet. It does NOT work for everyone. In my book it was worth a try. The book I recommend for beginners is "The Kid-Friendly ADHD/Autism Cookbook" because it's by a nutritionist and an MD so it's balanced. AND it explains the biology (why kids have issues), how to do various diets, and recipes. It helped my sons sensory issues calm down, among other things. You can read about it on my blog way back in 2009. Look for "autism" and then go all the way to the back. He also started eating more foods. He's still picky, but he eats more than he did. That's very much the short version.
2. I became good at hiding things in foods. You could hide pureed sweet potatoes in the pancakes, add an extra egg for more protein. Start w/just a TB if he's really sensitive. I usually add 1/4 to 1/3 c. in something like that. Up to 1/2 c. in cookies. Summer squash is also easy to hide--bland. You can hide pureed broccoli and spinach in brownies and spaghetti sauce. Jessica Seinfeld's cookbook was great for ideas.
3. My son was wearing sunglasses inside. Not sure if yours needs that, but maybe it will help. Only occasionally now, but hey, whatever helps!
4. Since your son likes baths, I would get some epsom salts and use them any time he's in the bath. They are calming.
5. A lot of kids benefit from magnesium, and it helps at bedtime. A friend of mine has had success w/Peter Gillingham's kids supplement. We have no money right now (about $30/month), but some day I want my son on it.
6. Can you get him something else to chew on? They make necklaces w/cords and discs that are safe for chewing. Or, another friend of mine got her daughter to squeeze something instead of ravaging her fingernails til they were bleeding. She keeps it in her pocket.
It looks like you have a lot of experts here helping you. I hope you find relief! I remember those days. Oh, and I wrote a post about haircuts, too. Can you find someone to come to your home? Or a friendly person that will do it at their home? That would ease some of the anxiety. Mine will still not wear the cape. i wear it, and he sits on my lap.
My recent post Treatment Tuesday–ABA Therapy
Lori, YCT · 728 weeks ago
Goddamnit...I HATE waiting lists. And I say that and I am sometimes the person people are waiting FOR. Still hate them.
I read through the comments of the people above me. Brilliant, brilliant stuff there.
And about the food and the clothes - people are right. Let go of whatever you can. You need to make your life and his less angstified and if he's eating enough and gaining weight, good. You're already getting supplements in him, so good again. One trick a dietician taught me is Carnation Instant Breakfast. Way better than chocolate milk nutritionally, basically just as good as Pedia-sure and way cheaper. For the clothing, accommodate as best as you can to make sure he's not naked or unsafe. The rest will have to wait until some desensitization training can happen.
Re: The paper chewing. I am *guessing* that this is a sensory seeking activity. Something about the effortful chewing is calming his frazzled sensory system, but..yeah, paper is not food and the risk that something toxic would be there is NOT good, not to mention losing an important piece of paper like a paycheck or a tax notice. Best plan - substitutes and crazy supervision for a while to interrupt him EVERY time he does it. Will he eat fruit leathers? Someone mentioned chew sticks. Beef jerky? (not too much of that though - NOT a healthy thing, maybe Whole Foods has a healthier alternative). Reminding him it's not food is silly - he can't care about that yet. Replacing it with something is the only way to go, and then - again - once actual treatment starts you can work on eliminating the behavior.
Sounds: This takes both accommodation and desensitization. Noise canceling headphones are great, especially when you're trying to de-escalate him. But I would also start a slow system of getting him more tolerant of sound. Starting with turning something loud on in a room he ISN'T in and letting him approach. You need to be with him, coaxing and encouraging. Start with music he likes, or a TV show he likes. Same thing with sound variety - music toys, things that bang. let him explore and control as much as he wants, but push him just a little bit. Play back-and-forth sound games where YOU get a little louder each time. And remember, when he tolerates a little more, or recovers quickly, lots of love and praise.
The biggest thing to remember is that he's NOT doing this to manipulate or control. He has almost no control over what's going in. It's like everything is at full volume, scratchy, painful, sharp, too bright, too intense....too much everything. Maybe you know what already? Sorry to sound patronizing if you do - and I hope it didn't come off that way. But sometimes I find that parents feel anger because they feel like they're being manipulated by a child, and that's just not what's happening.
But anger over him having to deal with it all, with all the work and relentless need...that I totally get. And send good thoughts as much as I can.
My recent post When you don’t say “Say”
Eden · 728 weeks ago
During the day you need to get his sensory system back on track as much as you can. Have him wheelbarrow walk by holding up his legs, get a mini trampoline and have him jump, buy a large piece of stretchy fabric, wrap him inside and swing. It will take some experimentation to see if he benefits more from side to side or circular swings. Find a cheap ball pit at Wal-Mart or Target for jumping in.
Don't have much experience with severe sound /light sensitivities but the sunglasses and headphones sound like good ideas.
Buy and read The Out-of-Sync Child and The Out-of-Sync Child Has Fun.
Remember that none of this is your fault. Good Luck.
solodialogue 73p · 728 weeks ago
My recent post The Innocence Flowers
Louise · 728 weeks ago
Food - my son eats very few things and some items have to be a specific brand (margarine) and he can blind test if we try another one! Makes eating away from home tricky but we have chosen to go with his very limited diet for nowas it does include some fruit and protein and hope he may try more things as he gets older.
Hair cuts - we used to have 2 people holding him down as our very understanding home hairdresser did the best she could. As he got bigger we realised we could not do this for much longer. We tried taking photos of her cutting his brothers hair (front, side & back) and let him choose which she did first by looking at the photos. He also touched the clippers and comb and (closed!) scissors. It took a long time but he now sits better than his older brothers but still has to be in control by choosing which bit she does next.
My friends Aspie son told her that when he was young he thought a hair cut would hurt and that his hair would bleed (it makes sense - it is part of him and everything else on his body would hurt and bleed if cut) so she showed him by cutting her own hair that no blood came out!
Marijan Jett · 728 weeks ago
My recent post Movie Review “Soul Surfer” by Harry Haddock
Amy (LLA_Princess) · 728 weeks ago
So i have two boys ages 8 and 9 both diagnosed PDD NOS and polar opposites in every way of presentation. Bryan presents like and ADHD Aspergers kid that is really verbal and hates a heavy touch. Cant stand too loud of noises. He hates tags and will literally gag and throw up at the site of things. He has really done well on meds and so we have eased up our focus on him even though his struggle now is perseverating over things and social skills, to turn more of the financial focus to Sean.FYI it sucks to have to pick and chose between them but I digress.
Amy LLA_Princess · 728 weeks ago
@pugariffic73 · 728 weeks ago
@pugariffic73 · 728 weeks ago
flyingqueenb 38p · 728 weeks ago
First off...THANK YOU SO MUCH!!!
You have no way of knowing this, but my computer hates Jill's comment system so I can't shit that you say while at her site, so she's been amazing enough to email me your commments throughout the day. I have felt completely overcome with love and support from a network of amazing parents. I can't tell you how much that means to me.
Also...please, PLEASE feel free to email me if you guys think of anything else. I'll try and keep everyone up to date as I navigate this. My email is dysfunctionalsupermom@gmail.com and I'm going to go now and sort through all of the good stuff that you've sent that Jill has forwarded to me.
Jill...I love you. Thank you, thank you, thank you...and that will never be enough for this.
My recent post I don’t want to…
Another Suburban Mom · 728 weeks ago
It he is eating paper, could you shave everythiing really thin and make it soft so it has that paper look? Maybe he would eat stuff on tortillas since they are flat and paper covered.
I hope you find some good solutions to the eating and dressing. And if the water soothes him, would one of those waterfall white noise things help him calm down, or does he need the feel of the water on him.
RGMama · 728 weeks ago
We also love the book "The Out of Sync Child Has Fun" and the Soft Clothing line http://www.softclothing.net/ for my almost 5yo girl with SPD and hyperlexia.
wantapeanut 47p · 728 weeks ago
I would start by figuring out what activities are calming for him, and what are stimulating. Then you can use those things throughout the day to help with regulation. It isn't always easy, and can change. Water can be both calming or stimulating for my son depending on factors that I have no idea about.
Heavy work is great too, like lifting or pushing things. Also jumping and swinging. My son is always crashing into walls - his way of providing himself joint compressions. The brushing technique isn't hard, but it can be stimulating so don't do it close to bed time. Weighted lap pads are great for calming during the day.
Find yourself an OT as soon as possible to help guide you (I know you are trying), but also know that there will still be some trial and error. And when one things works for a while, it may stop and you'll have to try some thing else as the kids grow and change. Good luck.
My recent post Focus On Speech
Susan · 728 weeks ago
1. The squinting/blinking...he used to do this frequently and seemed to happen more when he was in a stressful situation or somewhere he didnt want to be. I worried about this a great deal and was told to try not to make a big thing of it and not to point it out to him. As he got older it slowly got less frequent and now he hardly ever does it.
2. Fussy eating..sorry dont have any answers for that one, my son is still very restricted in what he will eat. Again we dont make a big thing of it and he is very very slowly adding new foods to his diet..at his own pace. I have him on vitamins so I know he is getting all he needs.
3. Haircut...I used to have to hold him down, while someone else cut..would close the windows as people must have thought we were killing him with the screams he used to make. He now tolerates the hairdressers...but not without thinking up excuses for reasons that day is a bad day..but the screaming has stopped. He also says it hurts.
4.Shoes and socks...he never used to like wearing shoes, but refused to take off his socks..he was seriously ill when he was 4 and in the A&E didnt even flinch when they put in drips etc (he normally hates anyone touching him)..that is till he was sick and the nurse went to take his socks off..they had to leave them on till they found a clean pair as he was getting that stressed. He is not as bad with shoes now, but has to have plain ones and ones that dont have any rough bits inside.
5. Sleeping...my sons sleeping patterns were horrendous..was lucky if he was asleep before 12,midnight and he would be up again any time from between 2am and 6am in the morning. This has also gradually improved although he is still up by 6am...not heard of normally in teenagers.
I could go on and on...looks like you have been given a lot of advice, but just thought it would help to know that things can improve..i look back at when my son was 4 and cant believe how much he has come on.
Good luck and try to make sure you get time to yourself, even if it is only a few minutes a day.
Ps if anyone has any tips about baths and hair washing would really appreciate it...my son still hates both and have never been able to get him in a paddling pool, never mind a swimming pool
sockmommy 19p · 728 weeks ago
Our problem was that he saw a SpongeBob Episode where Spongebob pulls the "main drain" and the whole town disappears through the drain. He isn't verbal enough to understand how that is impossible, or for me to show him how a toy WON'T go down.
Maddy is only almost 4 so he is still little enough that I can put him in the sink some nights. He is fine with that for some reason.