Summer + Routine Changes = Trouble!

Ahh...summer! It's here! Which for anyone with a child suffering from SPD or autism knows summer requires a schedule change. Little Miss does not do well with any sort of change, so the past two weeks have proved pretty difficult. It is going to take time I'm sure and then just as soon as we all get used to it it's going to be school time again and another schedule to get used to all over again. Great!

The past two weeks have been filled with tantrums, meltdowns, restless nights/naps and decrease in appetite for Little Miss. The meltdowns and tantrums I can handle...or at least try to, however, the restless nights/naps and lack of appetite worries me. Little Miss and Little Man both have enzyme deficiencies in their GI tracks (they were both born without the sucrase enzyme in their GI tracks) which means that they need a special diet to stay healthy, strong and keep them growing and stop them from loosing weight. Since the schedule has changed (or slightly before it changed) Little Miss has been barely eating. I haven't noticed her loosing weight though but I might if I was weighing her everyday...I don't know.



Since Little Miss is so difficult most of the time and obviously doesn't do well with changes I have yet to start her on this special diet of no sugar, no juice, no fruit, no high fructose corn syrup and so on. It sounds selfish of me (ok it is) but I am just picking my battles at the moment. We had her IFSP on Friday and decided that since I have all three therapists here three days (1 day each) a week then we need to start this diet. And let me tell ya, I'm nervous and IT'S.GOING.TO.SUCK!!! We're going to have tantrums and meltdowns times 4 (breakfast, lunch, snack and dinner), she is more than likely going to be eating and drinking less than she already is and I wouldn't be surprised one bit if she gets admitted to the hospital like Little Man did because of a surprising weight loss and dehydration. We'll see!



It's bad enough having three semi special needs children, having them all at home with different needs and wants, summer home schooling my oldest with her regular school work and her vision therapy, trying to keep them busy and happy while we wait for our new swing set and now to add on top of all that we're going to start something completely new to Little Miss. I'll be praying every night that I don't loose my mind...at least it would be a short trip though! ;)



We're going to be having family days all summer on Tuesdays which will be fun. BBQs, fun trips to local parks, museums and festivals and just being together as a family. It's usually pretty difficult to even go to Wal-Mart with Little Miss, although she has improved somewhat, so going out on these family days will be fun but probably more stressful then fun. Taking the kids to a big animal park last week was fun minus the tantrums, meltdowns, screaming and strange 'WTF?' looks from strangers. Although, as you can see in the above photo she did love feeding the goats! That 'my child has SPD' sign on her back is sounding better and better. Which brings me to my question in this post:



Question: When you go out in public and your child is having a serious meltdown and you're getting all kinds of looks from bystanders, what do you do? Do you tell people that your child has SPD (or whatever it is that they suffer from)? Do you ignore them and mutter, 'If you only knew' in your head? Or do you do something else? I would love some tips on how to save myself from embarrassment and stares.

Our experience with Therapeutic Listening!

A week or so ago I told you all about Therapeutic Listening and that children with SPD, among other things, can benefit from it. I also told you how it can make your child sick if not done properly. TL is very strong and should not be fooled around with. Well now I have my own proof to that.

Last week Little Man was at his weekly OT appointment. After about a half hour he and his therapist came out and she told me he had thrown up. He was white and when I say white I mean he was as white as rice! You could tell he didn't feel well. His therapist, who I really like, said that she thought it was because he was in the swing while doing the TL and was in it too long. I felt so bad for him and so did she. But after about 20 minutes, some water on his face, some water to drink and some down time he was back to his normal hyper self.

This past Monday Little Miss had an awful day! She was throwing tantrums, having major meltdowns and was very clingy, screaming and crying, etc. and so on. Nothing I did made any difference so I decided to sit her at the table with her TL headphones on and give her a sensory activity to do along with it. After about 10 minutes she was done. The strange thing was she was worse then she was before. I finally had to put her in her crib because I was afraid she was going to hurt herself (she bangs her head against things when she gets in one of these meltdowns.) After about 5 minutes I got her out of her crib and sat her down for dinner. She ate and ate and ate! All together she had about 4 kid sized plates of pasta, applesauce and cauliflower. She was an empty pit that wasn't getting full. She has been behind in communication but has been getting better with ST, OT and DT so she is saying some new words and new signs.

I spoke with her OT about it yesterday and she said that is was probably because she was so hungry and didn't know how to tell me and the music made her stomach hurt. Well then I just of course felt terrible! So now we are working on the "eat" sign! So my whole point is that even if your therapist helps you with TL and tells you what to do you need to be very observant of your child so that if they begin to feel sick you notice and stop the music. Having a child with sensory issues and having them not feel well equals major meltdowns!

This is my first hand experience with TL and my kids being overwhelmed by it. Please be careful when you do TL with your child(ren). Don't ever attempt TL on your own without the supervision and advice of your therapist!

For those of you that already do TL with your child(ren) here is a small list of things you can let your child do while listening to the music to give added input.

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Sensory play activities to pair with headphones and music:

~ Washing cars in a basin or bowl

~ washing babies in a basin or bowl

~ yogurt or pudding paint on paper, mat or themselves

~ magnets on a pan

~ sorting balls, cereal, etc in muffin tins

~ markers, crayons and paper

~ bingo dabbers

~ puzzles

~ necklaces made out of cereal

~ hide small beads in some playdoh and let your child go through and pick them out and sort them however you want.

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Do you have any more suggestions that we can add to this list? Please leave your suggestions in a comment!

Therapeutic Listening

If you have a child with SPD or any sensory issues then you probably already know about Therapeutic Listening and what it offers. But in case you don't know what I'm talking about then let me explain a little.

Therapeutic Listening is basically a therapy of music. The specially designed music works with your child on vestibular, sensory, auditory, etc. and is very powerful. The music goes really high pitched and low pitched. It's like a roller coaster of sounds and can make you dizzy or even sick if you listen to it too long and/or don't need it. To learn more please click here. Although TL is great, it is expensive and is not recommended for every child or every need. It is not something to mess around with and should only be done with the support and supervision of your Occupational or Developmental Therapist that is trained to work with it.

We are starting TL with Little Miss and today did a little extra. We (April & I) put her at the table with her headphones on and some sensory activities to play with. Doing both at the same time gives extra input and can really help their mood, behavior, spacial awareness and so on. Little Man does TL in a swing at his therapy sessions once a week too. Swinging while doing TL is another great way to give your child extra input.

We started with a very low CD for her called Rhythm & Rhymes. It is great for Little Miss because they're actually songs she will listen to and at some point start singing along with the music because they are toddler songs that every kid listens to and enjoys but redone in a way that works with certain issues. Little Miss did great with it today. She sat at the table, listened and played with a water activity and then some whip cream on a place mat. Those two activities are great for sensory play. After about 10 or 15 minutes she decided she was done and gave them back to me. Here are a couple pics of her this morning.

If your child has sensory issues and you're interested in learning more about Therapeutic Listening ask your OT or DT about it! Most therapists that are trained in it will have items that you can borrow. Like Little Miss' therapists; April (DT) gave us the headphones, travel pouch and a couple cds to start with. And Little Miss' OT gave us a kids therapeutic cd to work with. But please do not attempt to start Therapeutic Listening on your own. ALWAYS consult with your child's therapist(s) before starting any therapy.

I would also love some feedback from those of you that are or have used it with your kids. Did they like it? Did it help? Would you recommend it? What are your overall thoughts on it?

Edible Playdoh Recipe

If your kids are like my little one then they put *everything* in their mouths! And yes, I do mean everything!!! :roll: Playdoh is a great sensory item for kids to play with and if it's edible even better! Your kids can play with it at snack time and when they're done it is their snack! So here is a recipe for edible playdoh. FUN! :)

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Edible Playdoh Recipe:

3 1/2 cups peanut butter

4 cups powdered sugar

3 1/2 cups corn syrup or honey

4 cups powdered milk

chocolate chips (optional)

Mix the ingredients. Divide into 15 to 20 portions and refrigerate in plastic bags. After washing their hands, have children mold and shape the dough on waxed paper. Provide chocolate chips to be used as decorations if desired. Play with it and let them eat it!

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I am going to add another great sensory recipe this week so make sure to check back!

Therapy Thursday (Question/Answer)

Here it is, our first Therapy Thursday question. Shireen, our Speech Therapist, has answered your question. I hope this helps. If anyone has another question please email me at: bloggymommy3@yahoo.com

Question: I have a SPD question for you. My 7yo son is constantly playing with the baby toys. He always has. Tonight he was playing with this toy https://www.tinylove.com/toy.aspx?toyId=25 and I asked him why he liked it so much. He said he likes the gears that turn, the squeaky ball, the levers that go back and forth, the ball that spins, and the music. Is this a sensory thing? Are there more age appropriate things for him to play with that will meet those sensory needs? I'm pretty sure he's got a strong tactile sense. We have lots of clothing issues with him, and he has to constantly touch EVERYTHING. I'd get him some other toys geared at babies and toddlers, but with him being 7, and he's pretty rough on toys, I'd hate for him to break them. I guess what I'm asking is how can I constructively channel this need for touch and to play with the baby toys. We don't have many of the baby toys left as my youngest is now 2 and is on to bigger and better things.
Sincerely,
SPD Follower

Answer: You are right that that toy is not very age appropriate for him, but there are plenty of other toys that are. Some suggestions I have include Gearation or Gears Building Set, Light n' Chaser, Visual Tracking Ball Tower or other marble run, and the Light Up DNA ball or Window Ball. All of these toys can be found at www.beyondplay.com I have no affiliation with this company. I just think they have some great sensory toys. There are also things at home to give him more tactile input like playing with water, sand, playdoh and shaving cream. Hopefully this gives you some ideas of some more age appropriate toys for your son. A book I can recommend with many more ideas is "The Out of Sync Child Has Fun", by Carol Kranowitz. Thanks for your question and let me know if this helps!
Sincerely,
Shireen (Speech Therapist)

Vision Therapy

Update: My oldest daughter "Sassy Pants" has been dealing with many problems with school, her attention span, her ADD/ADHD and more. We took her in for an evaluation for SPD and they told us that yes, she does have sensory processing issues but they thought the main problem was with her eyes so they sent us in to have her eyes checked and for a vision evaluation. After completely both we found that her eyesight is perfect but she has problems with her focus and tracking. They told us that they recommend Vision Therapy but that most insurance companies don't cover this diagnosis. Great, huh? I've been so worried that even though she has a problem with her eyes that she wouldn't be able to receive help because we can't afford it if it's not covered under insurance. Well this past week I got a phone call and guess what??? The insurance company approved her for vision therapy! I'm so excited that she will be able to receive help. They recommend one day a week for 45 minutes for about 4-5 months to see a difference. So we start on Monday!

Her main problems in school were with reading, comprehension, math and spelling. It has been so frustrating that we could work and work with her on things and she would seem to get it and then the next problem or day later and it was all lost. She seems to have problems with her memory too. Hopefully after receiving the vision therapy for a while her school work and comprehension will improve. I am, for now, taking her out of Occupational Therapy until school is out for the summer and then I'll re-enroll her.

She is still on her ADD/ADHD medication but has been having problems sleeping lately. There are nights that she stays up until 11-12 and then has a hard time waking in the morning. This could also be part of her problem in school. So we are going to start giving her Melatonin to help her sleep at night. It's come highly recommended and comes in a chewable form. I will keep you all updated on how things are going and hopefully be able to come back and report after a while that she is doing better in school and the vision therapy is a success! Wish us luck!

Join us for Therapy Thursdays

Hello everyone and welcome back! I am here to tell everyone that now on Thursdays we are going to have something called Therapy Thursdays. All you have to do is email me or Michelle with any questions or comments that you want either heard or answered and we will put them in a post with the advice from one of our therapists on Thursdays.



We are bringing two therapists on board to help with questions, comments, new ideas and so on. They are Little Miss' Developmental Therapist, April (we will post her intro as soon as we can) and Little Miss' Speech Therapist, Shireen (who has already posted her intro). Please give them a warm welcome and have your questions and/or comments in by Tuesday of each week so they have time to answer all of them.



From time to time they may also post links to new places for you to check out, new ideas on different therapy ideas, at home recipes for you to try with your youngins and so on. I can't wait for our first Therapy Thursday which will start next week. So mark your calendars and submit your questions by Tuesday. See you all then!

Interview: Lori's Child

Ok everyone here is another new interview. Lori found us and asked to do an interview. She adopted her son from China and recently found out that he has SPD. Please give her a warm welcome and show her some support. Thanks!

My name is Lori and I am a 43 year old stay at home mom to one child, "M". Our family -- "M", and my husband and I -- live in the Ohio.

~ How old was your son when you adopted him?
"M" was 10 months old when we adopted him.


~ What was his life like before he was blessed with you?
"M" lived in an orphanage for the first 10 months of his life. We did not get to visit the orphanage, but we did see pictures of it and it appeared to be in good repair, well kept and clean. His primary caregiver had 7 children that she cared for at the orphanage. When we adopted him, his head was very flat on the backside indicating that he spent most of his time on his back in his crib. He also held his arms at an odd angle -- at 90 degree angles to his body, which is the only place he would be able to see his arms if he was lying down. The flat head has corrected itself and the odd arm holding disappeared after a couple of months with us.

~ How old is your son?
"M" is currently 28 months old.

~ When did you first notice that something just wasn't 100% with your son?
We always thought that something was different about "M". The adoption agencies always tell you that it takes about a year for these kids to catch up. At 10 months old, "M" could not sit up by himself or roll over. In the first few months he did catch on to lots of things pretty quickly. I remember the first night he rolled over he was about 11 months and he did it all night because it was so exciting to him. He did not sleep a wink that night.

After we had "M" home for a year, it just didn't seem like he was catching up anymore. In fact, in some respects it seemed like he was falling further behind. Also, he mastered things in very strange ways. For example, he would walk between my husband and I at about 13 months, but he completely stopped doing that after about a month. I attributed it to the fact that he had learned to crawl and that was good enough with him, but he did not attempt walking again until about 20 months. He mastered using a spoon at about 18 months. Over the last 10 months, he has regressed with respect to utensils. Sometimes he will use them like a champ for several weeks and then refuse to use them for several weeks. Right now, he is refusing to use any utensils or plates. He learns new words and then never uses them again. Occasionally, he will revert to crawling.

The biggest thing that clued me in to a potential problem was the fact that "M" did not "play" with toys. He just mouthed them and put them places -- even at 2 years old. When in a group play setting, "M" did not participate -- just fluttered around the edges doing his own thing. "M" does not like to crawl up on things, go down sliding boards, ride on riding toys or play with balls (he just hugs them and carries them around -- very sweet but concerning).

~ When was your son diagnosed? And how old was he?
"M" was just officially diagnosed this week, though I did my own diagnosis weeks ago. The way it all came about was very strange. We had been seeing an occupational therapist since October for help with "M's" fine motor skills. At one appointment in January, "M" was acting up, throwing tantrums, not wanting to participate. The OT suggested that "M" may benefit from a brushng protocol. She explained it to me and I thought it sounded very strange. I went home and did some on line research and discovered Sensory Processing Disorder. At this point, no one had told me anything about this disorder. I got several books and read them and knew that this is what afflicts "M". It was kind of like being told you need to have chemo for a liver problem, going home and looking on line to find out what chemo treats and finding out you had cancer -- strange! I knew I had to find a local "expert" to help us and I was able to do so. We met with her this week for an evaluation and she confirmed what I have known.

~ What kind of therapy (if any) does your child receive?
"M" currently receives Occupational Therapy once a week and Speech Therapy once a week. We are seeing the Physical Therapist who is the Sensory Processing Disorder expert twice a month and an Early Intervention Specialist twice a month.

~ Do you feel like the therapy is helping?
I have not had an overhelming feeling that any of our therapies are helping tremendously and I feel like it is because of a lack of focus on SPD thus far. Now that all therapists involved know about "M's" sensory issues, I feel like we are going to be getting more focused therapy and that we should see improvements.

~ What is your biggest challenge that you face with SPD?
I think "M" is so inhibited physically that it is affecting everything he does. That is "M's" biggest challenge. My biggest challenge is finding enough time in the day to get all of his therapies completed, get play time in, feed my family, get "M" to his multitudes of therapy appointments and still find time to clean my house! AND I'M A STAY AT HOME MOM! I really don't know how anyone who is working can keep up with it all.

~ What are some of the things you do with your son to help them during a meltdown or tantrum?
"M" responds well to giant bear hugs. Also, if I can get him to laugh, we are done with the tantrum. Tickling sometimes does it for him and I know that sounds strange as many children with SPD do not resond well to tickling. It seems to work for him. His latest thing is hitting and head butting -- that is a challenging one as I sometimes cannot get close enough to give him a hug without getting a head butt to the lip. In fact, I had a bloody lip just this morning.

~ What are some of your son's symptoms?
"M" has a very interesting way of eating. As I described above, he refuses utensils and plates but that isn't the only eating issue. He will put food in his mouth, chew it and then spit it out. He has done this since he started eating table food and we, of course, had hoped he would "outgrow" this lovely trait by now, but he hasn't. It makes for some very messy meals.

"M" has very distinct "good" days and "bad" days. On bad days, he just wants me to hold him and listen to music. He walks around crying alot. Thankfully, we have not had a full blown bad day since early January. Can that be because of brushing as that is when we started? I'm not sure. Good days are peppered with lots of giggling, lots of energy and lots of energetic head shaking and ear covering. We have tantrums on both kinds of days.

~ How do you deal with your stress?
I have discovered the awesome benefits of strenuous exercise. I get up at 5:20 to get to the gym by 6 and home before "M's" dad leaves for work. I know I'm going to be exhausted by "M's" naptime anyway, so since I'm going to nap at that time, I figured I might as well get up early. It is also of huge benefit in handling my stress to interact with other parents who have children with these same issues.

~ What is something you want all parents of children with SPD to know?
I don't really have enough knowledge to answer that question yet but there is something I want all parents of ALL children to consider. It seems to me like MOST learning disabilities are based in some way to sensory issues, and our local "expert" agrees. If parents don't address them properly then they may just end up on the ADHD/ADD drug bandwagon needlessly. Also, if you THINK that something isn't 100% about your child, you are probably right. Find out what it is because the younger your child is when these issues are brought to light, the easier they will be to remedy. It could mean the difference between 6 months of therapy vs. years of therapy. These aren't issues that children just "outgrow", they grow around them making it more difficult to get to the source.

Thank you for interviewing me! I hope I've been of some help to someone.

If you have any advice or kind words for Lori and her family please leave a comment. Let's all give her a big thank you for joining us and telling us about her and her family.

Thanks Lori!

Evaluation Update

This week we had my older kids' evaluations done for SPD. Finally! I took my oldest daughter (Sassy Pants) in on Tuesday and we went through and answered all the questions and they observed her for a while. They haven't said for sure that they think she has SPD but do think that she has sensory issues that need to be dealt with. They referred us to go see a Visual Therapist to get her eyesight checked out and to see if her eyes move correctly to read, understand and comprehend what she's looking at/reading. So we go in for that on Monday. (I'll update on that later after we get back.) So now she is going in to have Occupational Therapy once a week. And Sassy's teacher at school has offered to stay one day a week to help her out more in school on a one on one basis; she already stays after two days a week for extra help with a reading intervention teacher. So I am hoping that after a while she will start to improve in school. She was always so advanced in everything when she was younger so all this really took us by surprise. But we will do any and everything to help her and make sure her future is a bright one.

Today I took my son in for his evaluation and they said that he definitely has sensory processing issues that also need to be dealt with. I really didn't expect for them to say that; I really just thought that he had been through so much in his life that he just had weird quirks. But they said that SPD issues would explain his: never wanting to wear pants, shoes and socks, sensitivity to light, wind and touch, his constant loudness (he always talks really loud), his aggressiveness and frustrations, his constant need to touch objects and people and so on. So now he is going to go in once a week with my oldest daughter to get Occupational Therapy as well.

We will have to take all three in to get positive diagnosis's from a Neurologist but that takes a while to get in. So in the meantime they all three will all three be getting therapy. I'll keep you updated on what's going on and how they are doing.

Do any of you have multiple children with sensory issues? Do you have any advice or tips that you can give me?

Giving your SPD child more options

So far to help her throughout the day we have been doing yoga ball exercises (explained here). This is something she really enjoys and seems to really help her.

We are also getting her "control book" ready. I took pictures of all her things: things she eats, things she plays with, things that are in our schedule and so on. So starting, hopefully tomorrow, we will be able to let her have more control over what she wants. So tomorrow I will sit her at the table and give her two choices. I'll show her a picture of cereal and a picture of a bagel and let her pick which one she wants. Now this will be a little tricky because Little Miss doesn't point to things that she wants. She does, however, sometimes point to things that she wants us to look at but just not at whatever it is that she is trying to get.

Then at playtime I'll show her a picture of her little toy phone and a picture of her stuffed animal and let her choose which one she wants to play with. This lets her have more control over things throughout her day, which in turn will make her feel happy because she got to choose what *she* wants.

We will also show her pictures and explain what is going to happen next. Like a picture of the bathtub, "Ok Little Miss, now Mama is going to put you in the bathtub and (showing her a picture of her ducky) you get to play with your duck." Then at bedtime, "Little Miss now it's time for bed. Let's say goodnight." This lets her know what's coming, helps her put words with actions and routines *and* prepare herself for the next step.

Letting your child have more options is great. And after they get the idea that you show them the picture, they pick and you give it to them then you can move onto step two of the 'control book' process. If your child is like mine then helping them put words together and begin to form those words is a huge, very important step. So after she gets it I will then start to hold up two different pictures for her to choose from and ask her, "Little Miss, do you want the banana? Or do you want the apple?" but when I ask her I will hold the picture up close to my mouth and over-exaggerate the words. "...b-a-n-a-n-a?" or "...a-p-p-l-e?" and hopefully after a while she will start watching my mouth and start trying to say, instead of point, to which one she wants.

I am going to laminate my photos for her so that they will last a long time. You never know, maybe after she gets all this down we can figure out some new thing to do with them. But for right now this is enough. If you decide to do this with your child I highly recommend saving yourself some laminating sleeves and doing pics of foods on one side and pics of objects on the back. That way you can turn them over to do the next picture instead of having 100 pictures all one-sided.

What are some things you have made for your child that help in your everyday life?

Stefanie's Intro

Hello my name is Stefanie (aka Bloggymommy) and I am the founder and owner of the SPD Life. I am a 28 year old mother to three beautiful, special children. It is my youngest daughter (22 months) that has SPD (Sensory Processing Disorder). My oldest has ADHD and my son has numerous health issues. I am getting both my other children evaluated for SPD in the next month as well.

Michelle and I met through an online group of mom bloggers and found out early on that we had more in common than we originally thought. Both our youngest children have SPD. We are both from different states that became friends as we both learn and experience the ups and downs of SPD and what it does to our children everyday. We thought it would be a good idea to create a blog where we could vent on our frustrations, blog about new ideas, therapy appointments, strategies and help other parents that are going through the same things that we are.

It is hard at times dealing with people in public that have no idea why our children act the way that they do. From their standpoint, not knowing about their disorder, they think we have unruly, hyper, bratty children. When really what they are dealing with is an inability to express their frustrations appropriately so they lash out and throw fits, scream, hit themselves and so on. Children with SPD look completely normal so it is hard for others to understand unless they know about the disorder or are going through it themselves with either their child or themselves.

It can be so difficult to deal with our children and their disorder. We are still fairly new to this and are learning as we go. To see your child throwing fits, hitting themselves, screaming and crying, not being able to use words to communicate and being so frustrated that all they can do is melt down is so incredibly difficult. As mothers we feel like it is our responsibility and motherly instinct to know the difference between every cry and whimper and be able to understand the "words" that they use. When we can't we at times feel like failures because we don't know what they want or how to make them feel better.

So through this blog you will hear about our children's therapy appointments, melt downs, tantrums, doctors appointments, new found strategies and us just venting about a hard day. We will try to do our best to incorporate other online sites that offer tools and advice about this disorder as well. And hopefully at some point will be able to do giveaways for tools to help with children's SPD "diets".

I hope you will join us while we learn about this and learn how to help our children. If you have any advice or questions please feel free to email one of us. We hope that we can somehow make you feel better and be a place for you to vent and share as well.

*We have been working on this blog for some time now before opening and already have some posts on suggestions and stories here. So read through and drop us a comment or two and let us learn more about you and your situation.

We will have an interview post up in a few days on a new mother we found whose child also has SPD. We will from time to time do interviews on parents so they can share their thoughts, suggestions and stories. If you would like us to interview you or you have something you would like to share please email one of us @ bloggymommy3@yahoo.com or michwinter629@gmail.com with your story.

Michelle's Intro

My name is Michelle, and I am the 29 year old mother of 4 children, ages 13, 11, 4, and 2. For a little while, I had noticed that my 2 year old son had some issues that my other children never seemed to exhibit when they were that age. He always hated being dressed, and would take off his clothes or diapers, or complain about the tags in his clothes.. He didn't like to touch certain toys if they had a bumpy texture, and didn't like things like play dough, or anything with an overly soft texture. He just had a hard time with ANYTHING involving texture, senses, etc. He would get really overwhelmed in public places and just have a complete and total meltdown, and it would take him a few days until his body completely calmed down enough. I just knew something wasn't right.

At his 2 year old check up, his pediatrician suggested contacting Early Intervention in our state. I was so scared, because I had no idea what to expect. I had done some research on Sensory Processing Disorder, but just couldn't find a lot of information, and wasn't sure if my son had it or not.

The day of our evaluation came, and halfway through, the evaluator pulled me aside and said "He clearly has Sensory Processing Disorder. We'll do everything we can to help both of you work through this"

And that began our journey into Sensory Processing Disorder. It hasn't always been easy, and it hasn't always been pretty. It's been a journey of discovering new information, new resources, and new friends.

I was SO happy to meet Stefanie and to find out that we both have a child who has SPD. What are the chances?! We've helped each other through hard times with our children, and have listened to each other vent about the frustrations that SPD brings. We hope to be here to listen to you vent as well!

We hope you will find this to be a place where you can come for information, support, or place a place to come where you know you're not alone. I know sometimes when dealing with this, it feels like you're the ONLY one out there that has to go through this, but I promise -- there are others out there, and we're all in this together!

Tonight's tantrum.....

*Sigh* Tonight's tantrum was quite a doozy... It lasted for 25 minutes, and it was over chips. Yes, potato chips! Little Man has decided that he's on a hunger strike, and will only eat whatever junk food is laying around. Tonight he found the snack pack of individual chips -- dorito's, frito's, cheesies, etc. A little boy's dream!

So when we got home, I gave him a bag while I was getting everything ready for dinner. 45 minutes later, he grabbed another pack and kept shoving it in my face to get me to open it. He kept screaming "chips", "chips", over and over again. I tried ignoring him, but it just got worse.

He threw himself on the ground and started hitting his head on the floor. He rolled around and screamed, all the time yelling "chips". I tried picking him up to calm him down, and he hit me in the cheek.

Finally, after 25 minutes he calmed down. How did he calm down? I gave in and gave him the chips.....

YES, I know that was probably the wrong thing to do, but what was I supposed to do? I really saw NO end in sight of the tantrum. When he gets in those moods, I just feel helpless. I have no idea how to help him. The O.T. really can't offer any idea's, because she's never seen him like this... I just don't know what to do!!

Any suggestions?

Some suggestions from my O.T.

One of my little man's MAIN triggers come from when we're out in public. He hates noise, bright lights, extra. We're almost always guaranteed a melt down when he goes anywhere in public, and it's gotten to be pretty awful taking him out anywhere.

When I told his O.T. this last week, she had a good suggestion -- putting a hat on him to block out the bright lights, as well as putting either headphones, ear plugs, or a pair of ear muffs on him to block out the sound. I heard this, and I had to chuckle. While it *is* a good idea (and I know this sounds lame), but I'm worried about the looks he'll get from other parents and kids while we're out in public while he's dressed in his sensory blocking outfit! We get enough nasty looks as it is, when we're out and he's hitting or pinching me, and I just can't stand anymore nasty looks.

So Stefanie had a good idea -- a small Mp3 player that he can listen to! I think that's a wonderful idea, and I'm going to go out today and look for some that are cheap enough and durable enough for him. He likes to listen to his big brother's MP3 players, so I think he'd love to have one of his own.

AND, he can still wear a baseball cap in public without getting too many stares! I have noticed that when he gets overwhelmed, if he has his favorite Spongebob knit hat near him, he'll put that hat on and pull it down as far as he can, so it almost covers his eyes and covers his ears, and he'll go about playing with his toys. I guess that's his way of blocking out the 'scary stuff' around him.

Yoga ball therapy!

Sounds weird...I know, but man does it work! Our Speech Therapist recommended that we try using a yoga ball to help Little Miss. Every day, about five or so times, I lay her on her belly and roll her around on the ball for about 5 minutes. Then I change and lay her on her back on the ball and roll her around for five minutes. Then I sit her on the ball and bounce her for another five minutes. She loves it!!! She brings me the ball and tries to climb on top to start 'playing'. When I lay her down on it she lays her head down like she's gonna take a nap on it! The best part of it is that to her it's fun but to me it's therapy for less meltdowns!

So far I've noticed that she has had maybe one or two less meltdowns a day when we do this. Which is great!!! This will help her feel more relaxed and less frustrated throughout the day which in turn means that she will be a little more laid back to learn new things; new words, signs and so on. In the past two days she has started saying, "I KNOW!" in a really cute, happy voice and has even said "hot" to something when in fact it was hot. So now she knows the difference between hot and cold. Before she didn't really understand the difference. And it's great because now when I tell her something is hot she knows what I mean. Some months ago she got a hold of my coffee that I had just poured and tried to take a drink when I went to answer the phone. She ended up spilling it all down the front of her and since she doesn't feel pain correctly she didn't cry or even whimper. That scared me a lot! What happens if she really gets hurt one day and I don't know it? Well now I can rest assured that when I tell her something is hot she won't touch it!

So can I say all of this is due to exercising on the yoga ball? Well...no, but I think that it did play a small part in it. The rest I'm sure is her getting therapy, me working more with her and her getting a little older. But whatever it is I'm sure glad we're starting to see a little change for the better!

Suggestions for children with SPD

So yesterday was our appointment for Speech Therapy. I have to say that I *love* our Speech Therapist! She is patient and seems eager to get to know Little Miss! She always brings toys that get Little Miss' attention and are good for children with sensory issues. We are trying to find out which textures and things she likes and doesn't like.

She did have a tantrum when she was here but it was only a small one. She came out of it after a little bit and we had to remove the cause of the tantrum which was a toy that she wanted to open but didn't open. She loves the textured puzzle that she brings with her and *loved* the bubbles! In fact that's how we finally got her tantrum to end. The SP blew bubbles and that was enough to distract her and get in interested in something else. Since Little Miss doesn't have a lot of words we are trying to teach her baby signs. I don't know which (verbal communication or baby signs) is going to be easier for her to learn and start using but I really don't care which one it is. All I want is for her to be able to communicate with me other than screaming and throwing fits for whatever it is that she wants.


Our DT (Developmental Therapist) is coming for the first time on Monday and I cannot wait to hear what she has to say. I will update on Monday night or Tuesday on what happened and how everything went.


Here is a list that our SP left with us for me to do with Little Miss. I hope that some of these things will help you out with your own little one.


Suggestions:


1. Take pictures of everyday objects that are familiar to her and make a small photo album to show her the pics and give her choices on what she wants. (Ex. picture of a banana and a picture of grapes. "Little Miss, would you like to have a banana or grapes?" This way she gets to make the choice and it makes her feel more in control.)


2. Establish a sensory diet to calm and prevent tantrums.


3. Get a therapy net swing to put in the house for part of her sensory diet. Everyday at a scheduled time swing her so that she can feel better and hopefully throw less fits.


4. Use a toothbrush before meals to increase awareness in her mouth. (Little Miss has a bad tendency to over fill her mouth with food almost to the point of choking. This is because she cannot accurately feel when her mouth is too full. This will help 'wake up' her mouth so that she won't do it as much.)


5. In nice weather, go to playgrounds that are fenced and not crowded.


6. Stack up mountains of pillows for her to climb on. (Little Miss has no safety awareness and climbs on everything! This will allow her to climb but keep her from getting hurt.)

7. Let her jump on the trampoline with supervision.

8. Teach her to take one bite at a time by saying "One bite" and giving her one bite on her plate.

9. Offer her choices whenever possible to give her sense of control and reduce tantrums. (Yep, she's gonna be a control freak just like her mother! lol)

10. Use 'if' and 'then' when speaking to her about events. (Ex: "If you get your shoes on then we can go outside to play.")

When was your child diagnosed? (POLL)

Please tell us when your child was diagnosed, and what types of services they receive...

My son was diagnosed in September 2008. I knew nothing about SPD until his Pediatrician brought it up at his 2 year check up. Then I got online and read as much as I could about it, and I shook my head the whole time, thinking "this is *totally* him". He receives O.T services weekly, D.I. services bi-weekly, and speech therapy once every 3 months.

More frustrations....

I'm still SO annoyed over this. I know part of it's my fault for not checking up sooner, but shouldn't it be the Early Intervention Coordinator's job to make sure everything is running smoothly? I might be naive, but I *thought* that's what part of their job was.

SO here's the situation. When Little Man began services in October, he was set up to have an O.T. come to the house 1x/week, a D.I. (Developmental Interventionist) to go to the daycare he goes to every other week, and a Speech Therapist to come 1x every 3 months.

The D.I. went to *one* session with him, and because of some drama between her and the daycare, she was asked not to come back. That was November. Right afterwards, a new D.I. was assigned, and they said she'd start 'in a few weeks and that she'd call me to set something up'. It's now almost the end of January, and up until yesterday, I had not heard ANYTHING from the D.I, nor the Coordinator.

I finally called the Coordinator and she was shocked that the D.I. hadn't been out there - she thought all along that she was going every week for the past 8 weeks. Ummm, NOPE. So of course once she called the D.I to find out what was going on, the D.I called me right away to set something up for Monday.

So yay, Little Man will finally start getting his D.I. services! But geeze, could it have taken any longer to set up??? He's apparently entitled to 'catch up' services, although I'm not really sure what that is.

The first D.I., even though she only lasted a day, worked on his sensory and tactile issues, so hopefully this therapist will be able to work on that with him. Lord knows he needs it!

Tantrum Strategies (ARTICLE)

This article was given to me by Little Man's O.T., and hopefully it can help some parents out!

1. BEST TREATMENT: PREVENTION

a. Pick your battles: Avoid confrontations when it really doesn't matter. If they are not at risk for harm or harming something, give them time to get bored and try to get your way later.

b. Identify when and where your child has tantrums to see if there are particular triggers. Is it only in public, when they are hungry or tired? Is it during transitions from one activity to another? Knowing this info will help you prevent tantrums.

c. Be careful about setting yourself up for a NO answer. Do not ask your child a question if they don't have a choice to make. "We are going to leave now, okay?" is better stated, "We are leaving the store in 1 minute". Don't ask, "Do you want?" If you can't have the answer no!

d. Make a big deal often during good behavior that your child does. The key is letting your child know what pleases you and will get positive attention for.

e. Give your child cues that will help them prepare for what lies ahead. Sometimes telling a child when they have 5 minutes, then 3 minutes, then 1 minute until a transition is to occur helps them prepare for a change.

f. Always leave a small toy handy in your bag for distracting or providing an activity for those tantrums caused by boredom. If the toy is reserved only for when you are 'out', the interest in it will last longer.

2. DURING A TANTRUM:

a. Stay calm! The crazier they are, the calmer you need to be!

b. Let them know that you understand what they want, but that it is not going to happen now, then you stop talking!!.

c. Be careful not to reinforce the tantrum with extra attention and words that may actually be encouraging or rewarding the tantrum. Kids want our attention more than anything and often even negative attention is better than no attention at all. to work effectively, a tantrum needs a sympathetic audience.

d. Use isolation when ever possible for the tantrum. Establish a routine with total predictability. Put the child on a soft surface and IGNORE them for a few minutes, staying close enough to make sure they are safe. Occasionally reassure them that when they are calm, they can go play.

e. If they get up and move, do not chase them but make sure they are safe. If they are tearing up a room, then hold them on our lap tightly until you feel their arms and legs surrender. Holding can be reinforcing for some children.

f. Some kids can't calm themselves, and the tantrums last for longer than 30 minutes. These kids sometimes need to be rocked and held quietly when it appears they are 'stuck' and can't calm themselves. Sometimes giving them a pillow and a favorite blanket helps them to calm.

g. When the tantrum is over, let it go. Give them a hug and let them know that it is their behavior you don't like, but you love them all the same.

h. BE CONSISTENT with your words and actions. It is normal for tantrums to increase in order for your child to see if you react the same way every time. If the tantrums then decrease, your strategy is effective!! If the tantrums do not decrease, then you are doing something that the child finds reinforcing!!