I am writing this post not to bore you with details of our lives, but to encourage those out there who may be dealing with similar issues and looking for some options. I did not know of the benefits of OT and wish we could have started this several years ago...
I have come to understand and accept that most people do not understand most other people. There are so many issues in this fallen world and we just don't have the time to get to intimately know all of the ins and outs of everything. Unfortunately that usually breeds distrust and misunderstandings of those things which we do not understand. It has been a painful journey for me to know that people do not agree with much of what we believe in and do, but we continue to forge ahead. When we first started the adoption process we were trying to adopt from Liberia, West Africa. Most of the people adopting from our agency at that time were on the same closed group. We encouraged and supported and prayed for one another. It was a precious connection. When we were not able to bring any of our 4 kids home from Liberia, and other things happened we no longer were on that group. I desperately missed the connection. Foster care (3 of our adoptions) does not promote strong connections between foster parents and the foster parents themselves vary so much that connection is difficult. I have joined several yahoo groups specific to our kids' needs such as one on home schooling adopted kids, trouble with reading, dyslexia, etc. I was very excited (although also saddened) to be asked to be on a new group of the same women I had connected with 6-7 years ago who are now, unfortunately, dealing with all of the struggles of parenting adopted children. The struggles are many. Adoption is still VERY worth it. However, adoptive parents NEED support (and NOT to be told, "well, you chose this") and this is a way for us to get support. I appreciate fb and technology that even though there may not be people geographically near us to support us, we are able to receive support from around the world:) People who are looking into adopting need to know what they are about to experience.
Via one of these groups one the mom's started talking about some of the issues that I see with Grace in particular. (I don't wish to not include dad's, it is just usually mom's who are doing the leg work and seeking connection/relationships for support lol!) That confirmed what I had learned last fall from Karyn Purvis, PhD and TBRI (yes, I know I promised a year ago to start blogging about what I have learned. I promise that I will blog about it, I have the posts running around my brain, I just have not done it) that all kids who come from trauma need to have full educational, OT, and PT evaluations to assess their needs and strengths. I am tired of the people who tell me that if we just disciplined more we would have better results. I am tired of the people who say we don't discipline enough. I am tired of people not understanding. I am thankful for the One who always understands:) It is so, so much bigger than just discipline! So armed with new hope I took Superman and Grace in to pediatric OT and PT therapists for evaluations. (Bunny Trail: medications have helped, the allergy testing/treatment/weird stuff has helped, the nutritional stuff has helped, different disciplines have helped, TBRI has helped...I think that each of those issues are just dealing with a different part of the elephant and this is another part of the elephant).
I had always thought that Occupational Therapy was what people did when they had a stroke or a accident and needed help with some type of fine muscle skill, and that PT was about gross motor skills. I was wrong!
Both of the kids sailed through their general OT evals. Grace did very well on her PT eval. Superman came back with some PT areas to work on - primarily core muscle issues that contribute to his "floppiness" and lack of endurance. Grace, however, was found to have many sensory issues that can be helped through Occupational Therapy.
Permit me another bunny trail/soap box. One thing that the vast majority of people do not understand is the utter vital role of prenatal health. People will constantly tell us "Grace came to you at 4 months though, right?" as if getting her so early, or getting JJ at birth for that matter, somehow means that since we have had them all of their lives and have been responsible for their "nurture" we are at fault somehow for their issues or that we are making their issues out to be bigger than they are. Prenatal exposure to drugs and alcohol are not the only prenatal elements that can negatively impact a child. What the mother eats (or fails to eat), antibiotics that she takes, a normal and stress free pregnancy but a traumatic delivery/NICU, and cortisol levels from her stress levels can all have the SAME IMPACT AS DRUGS AND ALCOHOL on the developing baby. Just take a moment to let that sink in! It is a wonder to me that any baby turns out ok! Only by the grace of God! The impact is neurological one. Many times it is permanent or at least requires intervention. Three of our kids have prenatal exposure to drugs/alcohol. The effects are very different in each child. Then we have JJ who has no known drug/alcohol exposure but born to a mom who was very sick vomiting most of the time, did not gain much weight, had very poor nutrition, and had stress levels THROUGH THE ROOF getting pregnant with a 6 week old baby at home, no help from the birth father, a family who was condemning her, and, well, her lifestyle isn't great. Neurological insults abound. And sensory issues are neurological.
OK, back on track. Grace's issues are sensory. Essentially she it utterly over stimulated by visual and auditory sensory feedback. Isn't that the core of ADHD symptoms lol! Conversely, she is totally under-stimulated in the areas of tactile, proprioceptive (deep muscle pressure), and vestibular (balance/inner ear) stimuli. The under and over stimulation war against each other in her brain where it doesn't know what to be processing. Also, when she is overstimulated in one area, she will gravitate toward trying to stimulate the other areas.
In practical terms, the ways that I have seen this are:
Auditory: Grace will cover her ears and not like sounds. When she is in an area with many sounds she cannot discern what she is supposed to pay attention to.
Visual: again, when she is in an area with lots of visual stimulation she misses the forest for the trees so to speak. She is forever noticing what everyone else is doing rather than what she is supposed to be focused on.
Tactile: Grace is the messiest eater EVER! She is the messiest everything always! She is always washing her hands and playing in water until her hands crack and bleed all of the time. She is always chewing her hands, hair, etc. She digs out the sheet rock mud from on top of the screws on her bedroom wall with her bare fingers. She has ripped all of the wall paper border off of her walls, again with her bare fingers. She is forever dirty playing in sand, digging in dirt, pulling apart anything she can find. She wants to fully feel and physically experience everything. No personal boundaries? Craves physical touch/tactile stimulation to connect. She has a bed so full of toys that I cannot imagine how she sleeps! She needs the "feel" of them and their textures.
Proprioceptive: When grace is getting overstimulated she will stomp her feet or walk as if flat footed so it seems like she is stomping her feet. The OT explained that kids like her have a strong need for keep joint/muscle compression so while she "knows" how to walk heel/toe stomping flat footed will give her sensory input that is soothing to her. She is not just doing it to be rebellious. I was worried she was going to blow out her knees!
Vestibular: another huge one for Grace. When overstimulated Grace will spin in circles a lot (remember her first black eye??!), hang upside down off the couch/ottoman (2nd story railing of my parents deck), and swing/rock. She much prefers circles to back and forth. Again, when visual and auditory are too stimulated she will go to the 3 areas that are understimulated to self-soothe.
Whew! We had the week of vacation between the eval and the first appt so I had a chance to just sit back and watch her behavior. Putting a different framework on the "why" of what she was doing was so helpful! I was able to have hope that one day it will be better:) The problem was that I still didn't have any tools to make it better as vacation is VERY stimulating lol!
Interventions we are starting:
First, I am to really think about all of her environment and her responses in terms of the 5 categories of stimulation that we are dealing with. Second, I have been asked to do, as interventions, things with Grace that we have totally, totally, totally removed from our lifestyle due to the issues she has. For example, can you IMAGINE her with PAINT! eeee gads!!! Ok, but I can do this...
Visual: we are to get a lava lamp, bubble maker, or fiber optic tree/something to give her something to look at that is visually stimulating but in a calming, methodical, and structured manner. Meaning, it will keep her attention but keep her calm. We are to have a place for her to go in the house that is visually calm.
Auditory: unfortunately there is not much that can be done for this sense other than graded exposure until she is able to handle it - and the use of headphone/earplugs.
Tactile: this is the one that scares me the most. We are to give her lots of controlled sensory input. Playing in rice (beading string but she had to pull the beads out of rice to give her the tactile stimulation), painting (again, imagine me physically cringing!), playing in sand (same cringe!), fidget toys, play doh (arrrgggg! the mess!), squeezing clothespins, sorting items that she finds in a bucket of beans, etc. This one will take the most creativity and patience from me. I was also horrified that I have been removing the very things that she has so desperately needed because of the huge messes that she makes (do you remember just for a moment what our bars of soap look like lol!) Sugar free candy for oral stimulation.
Proprioceptive: We are to get a bean bag and have her lay in it, enveloped by it, with a heavy blanket over it. Rolling over the top of a big bouncy ball (the kind you sit on), pushing against walls, sweeping, carrying various heavier items, stretching, etc. Anything that will give deep muscle stimulation/joint compression. Wheelbarrow, bear crawling, jumping jacks, etc.
Vestibular: swinging, rocking, listening to/feeling drum heavy music (African or native American) where she can feel the beat.
Finally, we learned the Wilbarger brushing technique. Karyn Purvis, PhD talked about this one a lot. It is a mixture of brushing her skin with a soft brush alternating with keep joint compression. Grace LOVES it, it relaxes her, and she gets to do this every TWO hours.
We have a schedule of what to do every 2 hours with her. Even though this is a time commitment it will hopefully take up less time than the hours of screaming we get when she is overstimulated. These techniques are supposed to help to sooth over stimulation and stimulate what is under stimulated so that she can regulate better. We are ALL ABOUT having a better regulated Grace!!
I know this post is very long, for those of you who have read it to the end I hope it has been helpful:) Feel free to ask me any questions that you may have about this, or you just read The Connected Child by Karyn Purvis, PhD or The Out of Sync Child by an author I can't remember right now:)
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