Living With SPD (part 2)
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When I wrote the first post about this subject (Living With SPD -Sensory Processing Disorder) I did not plan on writing a second part, but lately things have gotten a little out of hand and I have been overwhelmed and needing to use my writing skills to get everything that is in my head out somewhere else.
I wrote last time about what it is like to live with a child who has SPD, so I won’t repeat the same things, but I will add onto it. My husband has been home from deployment for almost a month now and I feel that we are just beginning to get settled into a new life. New because it’s been almost 7 months since my husband has been home and new because things are different now. Adam has changed and gotten older. His therapy started right before he left, and we did not know all the problems that he had until during the deployment. Now that we know and understand a little more of what is going on, we are now learning to figure out together how to handle things and how to raise this little boy whom God has given us.
With Adam every day is something new. I am seeing more and more things that I don’t understand and more behaviors where it’s hard to figure out if it’s his just him being a normal toddler or something to do with the problems he has. Being a parent is hard enough, but you add this to the mix and sometimes I am just so lost. Even with all the therapy I am lost, overwhelmed, and sometimes have no answers to the questions in my head.
Since writing the last post, I have also learned some new things. I have learned more about SPD, I have learned more about Adam and how SPD affects him personally, because every child is different. And that is a little what I am going to explain today.
According to the therapist, Adam’s case of SPD is a little different. Most kids with SPD either are sensory seekers where they are seeking different sensations, or they are sensory avoiders they want to avoid those different sensations and are scared of them. Adam is both. Instead of having characteristics of just one or the other he shows both.
Here is an excerpt from an article that shows the differences between sensory avoiders and sensory seekers:
“Avoiders tend to get labeled as ‘fussy,’ ‘sensitive,’ ‘picky,’ or ‘spoiled;’ Seekers are often considered ‘behavior problems,’ ‘hyperactive,’ ‘difficult,’ ‘stubborn,’ ‘coddled.’ Many of us parents have been blamed, told our kids need more discipline, or that they are “In need of a good spanking.” Here are some things that you might see a sensory seeker doing:
- Climbing too high
- Climbing everything
- Crashing into things (people, furniture, walls)
- Mouthing/licking inedible things (furniture, toys, body)
- Chewing inedible things (clothing)
- Eating excessively
- Constantly wrestling with siblings
- Touching everything
- Playing with food
- Eating messily
- Overstuffing their mouth
- Eating spicy/hot foods
- Under-responding to pain (‘shakes it off’ quickly)
- Dumping out toy bins just to look at everything
- Engaging in excessive sensory play (mud, water, soap, etc.)
- Running barefoot
- Chewing on their toothbrush
- Not sitting still at their desk
- Falling out of their chair for no apparent reason
- Seeking loud noises (turns up TV, battery toys against ears, vacuum.)
- Failing to monitor their own volume (you constantly say, “Stop yelling!”)
- Smelling everything, even bad smells
This is not a comprehensive list, but it is a starting point.”
“Sensory Avoiders are probably what comes to mind when people think of a child with sensory issues: The child with his hands over his ears. But, there is more to it than that. These are children can have sensory challenges with even the basics in life: eating, dressing, bathing. The sensations from day-to-day living can interrupt an Avoider child’s functioning, and make it nearly impossible for them to learn or socialize appropriately. Here are some things you might see an Avoider doing:
- Picky eater (prefers one texture or basic flavors)
- Covers ears at noise (hates vacuum, blender, hand dryers)
- Avoids touch (not a ‘huggy’ or ‘cuddly’ kid)
- Hates tags/seams in clothing
- Won’t wear shoes (or prefers only one shoe type)
- Avoids messy activities (mud, sand)
- Avoids art activities like painting or playdoh
- Walks on toes
- Doesn’t engage in playground activities (climbing, swinging, etc)
- Hates a wet/dirty diaper/underwear
- Dislikes having people too close
- Refuses to take a bath/shower or play in the sprinkler
- Hates water on their face
- Hates/Refuse to brush their teeth
- Complains about smells
- Complain that normal light is too bright (wantings to wear sunglasses)
- Over-responsive to pain (everything hurts!)
- Avoids/refuses stickers/fake tattoos”
To read the rest of the article click here: Sensory Seekers and Sensory Avoiders
Adam shows characteristics from both these lists and I wrote about some of them in the previous post. To me, Adam always seemed like more of a sensory avoider, he hated grass, sand, play dough, and baths just to name a few, but now with the therapy, the coming months have seemed to bring on these new characteristics of sensory seeking.
Some new things I have noticed in the recent months are:
We call it Adam’s “happy dance” he dances around the room stomping his feet and waving his arms. At first, I thought, “Awww how cute he’s dancing!” But as he started doing it more and more I thought, “Why is he doing this? It’s not just because he’s happy.” Having my husband here a lot more has helped too and he pointed out that he thought Adam might be seeking sensory input in his feet, and according to the therapist he was right.
Adam stomps his feet and does his “happy dance” because he is looking for a stronger feeling in his body then just when he walks around. He is looking for sensory input. Of course it helps that he looks absolutely adorable doing it too! Here is a video of him doing his happy dance.
Adam can’t talk, but he has recently discovered how to use his voice. And again I believe he is seeking sensory input only this time with his voice. He will be playing with his toys and all of a sudden break out in a blood-curdling and high pitched scream. The first few times it happened I about had a heart attack thinking something was wrong, but he just smiled at me and went back to playing.
He also does it when he is mad at us for telling him “no,” or during a temper tantrum, but sometimes he does it for no reason which can be quite embarrassing when you are shopping at the commissary and it sounds like your child just might be dying by the noises he is making!
Playing hard and rough and Pushing
This is one of the things we have trouble with the most. I have been told by the nursery workers at our church that Adam can be very rough with the oher children. And he is not just rough with children, but even with us at home.
I witnessed how bad it was first-hand when I was working in the nursery this past Sunday. Adam walks in and throws his cup across the room, runs and gets it and throws it again. He sees a kid with gold fish crackers and wants some so he walks over and starts slapping him (his way of saying I want some goldfish crackers now). He sees a little girl playing on the slide and goes and gets very close to her, he presses his back to her then he turns around and presses his face to her face pushing hard. She cries. I get through telling Adam, “No we can’t do that,” and he screams his blood-curdling scream and slaps me a couple times. I want to go dig a hole and hide in it by this point.
The point to all that is yes, parts of this are “normal” toddler behaviors. Yes, kids hit and push, and we try to teach as best we can that it’s not nice, BUT a lot of is Adam trying to seek sensory input. Sometimes he hits over and over and over either us or the floor or the couch – that’s just him seeking sensory input in his hands. Adam throwing his cup- yes that is wrong but again he is always rough with his cup. He doesn’t just hand it to you or put it down gently he has to slam it down or throw it because that is how he gets the sensory feeling that he needs.
When he was pushing on the little girl, in that case he was not trying to be mean he really wanted to play with her. He just sometimes uses his head to press against people or objects to get sensory input. He does it at home too. Sometimes he uses his back, sometimes his butt, his legs or head. But when you have other little kids who have no idea why he is doing that they get scared. He doesn’t understand that you can’t walk up to people and do that to them although we try to get him to understand the best he can. He gets frustrated with us because he can’t talk and that is frustrating for us as well because we don’t know how much he understands.
While a lot of this is bad behavior, the problem is trying to figure out which times he is purposely being mean and being bad and which times he is just trying to seek some sensory input. Discipline can be hard at times because sometimes we are just not sure which it is. I try to teach him we can’t do that, but I really don’t know how much he gets. So we just keep working on it and try to figure out the best way to deal with it whether it is bad behavior or sensory seeking.
Spinning and head shaking
Another thing Adam does to seek sensory input is to spin in circles or shake his head “no” very fast. I think we all know that strange feeling we get after we spin in circles or if you shook your head “no” over and over very fast. He did this a lot when he was younger too and we just happened to catch a video of it when he was about 14 months. Of course back then I had no idea the real reason he was doing it.
This one is kind of different as we are not sure if what is happening is something Adam is doing or something involuntary. During the past 6 months it has happened several times and since my husband has been home it has happened several times as well. Adam will tense up his hands and all of sudden his whole body shakes. It usually happens when he is relaxed and is eating or watching tv, but it happens so fast we can’t really tell what is going on. I plan on talking to the therapist about it to find out if it could be sensory seeking, but if not we may have to look into the possibility that it might be absence seizures.
T-shirt, Pillows and Weighted stuff
Adam’s occupational therapist has given us these little vests that are made of tight stretchy material. Adam wears it under his clothes to help him feel secure so that he doesn’t seek as many sensations and to help him be more calm. He also likes to be in small, confined areas or to cover himself with lots pillows. The pressure from the pillows and being in a small area help him to also feel more calm and secure.
There is also weighted vests and blankets that can help children with SPD and also Austim. We have talked about introducing a weighted vest with Adam to help with some of his therapy stuff and to help him learn where he is in space, and to give him more security so he is less aggressive. I’m not sure if they are going to do it with him or not, but time will tell.
Here is a picture of Adam wearing his little vest and another picture of Adam covering himself with pillows…
As far as the other appointments I mentioned in my last post I have a lot of updates with all that. We were able to get Adam’s hearing tested, but they only were able to do the first half of the test. We are going to finish the second half soon, but the doctor said so far his hearing is fine. In several weeks Adam will be gettting a food allergy test to make sure he does not have any food allergies. I know several of you messaged me telling me it might be a good idea and his therapist recommended it so we can be sure he is good in that area before moving on.
We finally were able to see the GI specialist to find out what was going on with Adam’s liver. He was a very good doctor and ordered some more blood work and also asked us to get some swallow tests done for Adam to see if there was a problem with his esophagus that might be preventing him from eating most solid foods. We got the results from the blood test back and it looks like it was a viral infection that his little body has been fighting since he was in the hospital in February. The blood work they did still showed some other abnormalities, but nothing serious and they are going to continue monitoring it.
We went and had the swallow test done last week. It was a huge ordeal, but I was so thankful my husband was there with me. We spent almost 3 hours at the hospital, but they did a very good job with Adam. It took 3 nurses, a doctor, and 2 therapists, but we got through it and found out that Adam has a little bit of reflux. Other than that he has no other problems eating that they could see and believe it is just from his SPD and texture problems as to why he won’t eat.
As far as getting help with the eating, we finally were able to get through with the Marcus Institute (you can learn more about that here: Sacrifices: Our Journey to the Marcus Institute) and we have an evaluation set up for July 12. We thought that meant that Tricare was going to cover it, but found out that right now they are only covering the evaluation and if and when we get into the program then Tricare will have to re-evaluate everything and see if they are going to cover his care. We are praying very hard that they do. The good news is, if we do get the referral for this care, they will be pay for our travel, hotel, and food while we are there for the 2 months. That is a huge praise!
Thank you to all who have encouraged me, prayed for me, and shown an interest during this time. The past few weeks I have been so overwhelmed with it all. I ask myself how can I raise this child right? I have no idea how. I do not know how to raise a child with SPD, I do not even begin to understand SPD, and sometimes I feel so unqualified and equipped to do this, but God is working in my heart every day through church and through His Word and other people.
I learned from a very wise friend not to ask WHY this is happening, but to ask HOW is God going to use this in my life to help me grow and to glorify Him? I have to keep telling myself this every day. God has a plan and one day I will know what it is.
Kathryn, I can only imagine how bittersweet this must all be for you. A diagnosis to finally help understand what is “wrong” with him and to help you get assistance for him, but t the same time knowing this is for life. He isn’t going to just grow out of it. My prayers are with you and your family and I am rejoicing with you that the program expenses will be paid. Now to pray you get that referral!!
Kathryn, I know we just “met” but as one mom of a kid with both sensory seeking and sensory avoiding spd, I see SO much of my Drew in your post (I am really going to pick your brain on the not eating thing since that is one of our biggest issues right now!) . I have finally came around to the point where I feel that God must know my husband and I are strong enough to handle all of this even though I don’t feel like I am. HE knows what he is doing and that is what I cling to in the middle of a spiral meltdown because I’d feel like curling into a ball and never getting out of it without that knowledge, and he gives just enough strength to get through the day. I’d be lying if I said I was great with all of this but it seems each day gets a big better. You are NOT alone. I am praying for you.
Finally read all this.
You are doing an amazing job!!! praying for wisdom for you as you continue this journey with your sweet boy <3
Thank you Paula. All prayers are welcomed in this new chapter of our lives.
Thanks for stopping by.
I can’t imagine how frustrating this is for you! Lately I’ve been close to tears with Ezra’s behavior because he has started pushing and hitting and screaming and I just want to know WHY he is acting this way, so I can be a preemptive parent just not reactionary and discipline him when he does sonething wrong. SPD adds a whole new dimension beyond just the “terrible twos” and this post just reminded me of how hard things really are for you. I really don’t know how you manage! You have incredible strength and I’m proud to call you my friend. I
Know that I cannot understand what it’s like for you, but if you ever need to vent I will do my best to listen.
I think a lot of behavior for toddlers is unexplained. Yes, sometimes there are triggers, and I always try to see if there is one, but I have also noticed that a lot things depend on his mood and attitude. And sometimes for no reason at all he will just behave bad. But yes, I think you are right about being preemptive. I find it harder yes, because sometimes I don’t know if the reason is some unknown sensory thing or just regular toddler stuff. Anyways thanks for the comment and encouragement I really appreciate it. 🙂
I feel that I have to share our experiences with someone. Our daughter, Kaeleigh has always had some mild symptoms of SPD but in the last year or two, since puberty hit, her symptoms have exploded and she is having a lot of difficulty with everyday life and school is becoming impossible, although she insists on going to the point that she hides her symptoms just so she can continue being in school. Her symptoms are so bad that she no longer has any friends because she cannot be with them(can you imagine someone with SPD dealing with squealing, hugging, teenage girls?) and she says that she sits in class and doesn’t understand anything the teacher is saying. She can’t go shopping because of the lights, sounds, smells, etc.
The thing is that we have 2 problems 1. We can’t find a professional who will take us seriously in terms of SPD – they either won’t acknowledge its existence or say that her case is so unique that they don’t know how to treat it. and 2. We can’t find many examples of teenaged cases such as hers – most people, like yourselves, have toddlers who are being diagnosed and we can sympathize, but the cases are different.
Can anyone help us?
So glad that you stopped by to visit my blog! I am so sorry to hear about your daughter. What kind of specialists has she seen? For SPD, you need to see an OT. They are the ones that can diagnose. A lot of people don’t believe SPD is a real disorder and so many people are trying to get it passed as a real disorder, but it is very hard to get insurances to cover the costs etc. If you find a good OT they will put under occupational therapy and so the insurance should cover it. If you can, start searching for a therapist in your area who is certified in Sensory Integration, that is the best therapy you can get and some OT’s do have the certification. I would start researching in your area, people do help older kids it just might be a little harder to fine someone. Also, start doing as much research about it as you can, here are a bunch of links I have saved that have been very helpful: http://pinterest.com/kathrynann24/spd-sensory-processing-disorder/. Also, check out these two pages on Facebook: http://www.facebook.com/pages/Raising-a-Sensory-Smart-Child/103533493306?ref=ts AND http://www.facebook.com/pages/SPD-Connect/102002179868870?ref=ts. On the SPD Connect Facebook page you can post questions and they will post them so everyoen can give you advice, I would post on there and ask if anyone has any suggestions, I am willing to bet you are not the first with a teenager with SPD. Hope this was helpful and that you get some answers. Good luck and let me know if you have any more questions!
P.S. Would you mind if I used this question as a featured for a blog post? I am sure other people are wondering the same things…?
I have no problem with you using my question as a blog post. We have brought Kaeleigh to an OT but she feels that she’s not experienced enough to help her. She has also seen neurologists, psychologists, ans a specialist in diseases, but they either ignore the suggestions of SPD or suggest that there is “something else” going on with her. I contacted some specialists who are at Sick Kids Hospital today and am waiting for a response. Hopefully they will be able to help us. The problem is that we live in Newfoundland and the specialists all seem be be pretty far away. Anyway, thanks for the quick response; maybe the blog post will get us some more answers.
Thank you. I am so sorry you are having so much trouble. I pray that you find grace and peace in this time and that will find a doctor who is able to help.