Nov 30, 2009

Sensory Processing Disorder, Sloan and Sunny San Diego (My most important post)

I have in previous posts made indirect references to some of Sloan's "uniqueness". I use this term because Sloan is made in God's image and God doesn't make mistakes. When Sloan was about 14-16 months, we noticed some of his uniqueness budding forth. Sloan was quickly becoming VERY active; not just the normal: "he's a toddler boy; boys will be boys; he's all boy" type of active. This was the type of active that actually caused conflict and tension between Chad and I. It was the type of behavior that made it difficult to parent and in some ways to have normal functioning. When Sloan was around two, we had a stranger come up to us in an airport offering to sell us something Chad termed as "snake oil" to help "cure" our son. Sloan was also not developing at a "normal" rate with his speech and language. So in all of my motherly wisdom, I turned to the Internet, of course! I challenge you to type in the search words "toddler" and "speech delay" and see what pops up. I spent the next several weeks trying to convince myself that Sloan did not have autism. Eventually I faced my fears and made an appointment with a speech therapist who then in turn referred us to an occupational therapist. It was there that Sloan was diagnosed with Sensory Integration Dysfunction or Sensory Processing Disorder(SPD).

Sensory processing "refers to the way the nervous system receives messages from the senses and turns them into appropriate behavioral and motor responses." SPD exists "when sensory signals don't get organized into appropriate responses." In Sloan's case he has a "hyposensitive" system to sensory intake and causes him to be a "sensory seeker." Everything Sloan does is BIG; that's how he is able to feel sensory stimulation. He loves to crash, jump, tackle, spin. He is often referred to as a dare devil. He needs constant movement. Kindergarten, although not perfect was manageable. It was a short day with lots of movement, music and play.

Enter first grade. Sloan was expected to sit at a small desk and stay on task, most often on independent study with only a break for recess and lunch. For a sensory seeker, it was a nightmare. We have learned that movement actually HELPS Sloan pay better attention and this is the exact behavior for which he was reprimanded. The more his sensory needs were deprived, the more he sought them out. This began to result in multiple visits to the office daily. I was accompanying Sloan to class almost every day as his shadow. To complicate matters, Sloan had a brand new teacher who was overwhelmed in her new assignment. We brought in our occupational and speech therapists to make recommendations but she was not properly equipped to implement these strategies. I began to do research and found that there are private schools that cater to students with SPD and other related disorders. These are schools for students who are very bright but have who have learning differences that traditional schools do not understand. We visited one such school in San Francisco, The Laurel School. Chad and I spent three hours of blissful enlightenment there. It was a light bulb moment when we absolutely knew that Sloan was not in the right environment, and a Laurel-type school was! We knew that his incredible potential could be absolutely realized there, and would be squelched where he was. As we contemplated what we would do on the drive home, I received a long email from his principal detailing his multiple visits to the office that day for things that we saw every child at The Laurel school doing, but there it was accepted and understood. I immediately emailed his principal and told her that Sloan would not be returning. Sloan never went back. His last day of school was at the end of September.

Since that time, I have done the "unthinkable" for me: homeschool. Our school is affectionately referred to as "The Sloan School." It is not my first preference, but it is much better than what we were experiencing. So, where does San Diego fit in all of this? (Great guess, Mrs. B) In one word: BRAIN HIGHWAYS. A superintendent of one of the San Diego School Districts is a friend of Chad's. He told us about this cutting-edge program that helps "reorganize" the brain. It only took one visit to their Encinitas-based center for us to know that we HAD to do this. We learned that although Sloan does have the diagnosis of "Sensory Processing Disorder" it is really irrelevant. The cause of this is incomplete neurological work that did not occur during the first year of life. There are incomplete "highways" that were not developed and it makes life SO much harder. The good news is that the brain CAN change, and we can go back and do patterns from the first year of life to help those highways develop. This is not occupational therapy. We have done that for over 5 years with little results. This is NEUROLOGICAL REORGANIZATION. So we packed up and have moved here for their first program that lasts about 10 weeks. We are living right on the beach in a gorgeous town in North County San Diego called Solana Beach. We are right near the world-famous Del Mar race track. It is an idyllic setting and lots of opportunities for wonderful "Sloan School" field trips.

It isn't just all sand and sunshine. The neurological patterning is hard work. A person's success is directly related to one's commitment and priority to the program. We are making it our NUMBER ONE priority. I urge anyone who has a child with autism, SPD, ADHD, etc. . . or who knows someone with a child with one of these disorders, to please visit their website www.brainhighways.com. There are six short videos on the homepage that are beyond informative. They have just launched an online program for the Spring. They have people from all over the world requesting their program. Many internationally adopted children have sensory issues. I pray that every family who has struggled like ours, can find hope in Brain Highways or a similar approach. We are praying and hoping for great things. I am going to post more often about our Brain Highways experience from this point on IN HOPES THAT SOMEONE WHO NEEDS TO READ ABOUT THIS WILL FIND IT. Thank you Lord that you have lead us here. It was part of your plan all along.

030
On the USS Midway Aircraft Carrier Museum

Sloan, we pray that all of your dreams take flight . . .
037
and SOAR!!!!!!!!

17 comments:

emilyb said...

This is so interesting- what an intriguing concept. So many kids nowadays have these similar issues- it's great to see some light shed on helping these children. Sloan is such a precious boy- his smile and face just shine all the time with happiness and warmth. He just always looks like the kind of person you want to be around :) What a blessing to find this program through Chad's friend and be able to move to San Diego- God always has a plan doesn't he? Kensie and Sloan look like they are having a blast in sunny San Diego. Your family is so beautiful in every way!!! Kudos for trusting your instincts and God and reaching out for other options for Sloan!

Mandi said...

Tisha,

Thank you so much for sharing this information with all of us. I know it takes alot of courage to come right out and say something like this. I love that you are going to any lengths to help your child.

Please keep us posted. I will be keeping you and Sloan in my prayers over the next few weeks.

Hugs,
Mandi

Half Gaelic, Half Garlic! said...

Hi Tisha,

It sounds like you are well on your way with Sloan......I am so happy for you guys. The program sounds incredible!!! Since I began blogging, I have run into many families who have adopted internationally and have children with SPD....in fact, one of my very good friends has a daughter that was diagnosed last year. If you are interested in connecting with her, just let me know. She is very nice and talks a lot about it on her blog.

It seems the biggest step is getting the diagnosis..... I know it is not easy and you probably have a long road ahead, but hang in there and keep talking about it here and sharing your experience. You never know who you are going to reach.....and who will reach back to you!!

Hugs and Happy Holidays!!

Lisa

Michelle said...

Wow!! To say you have been busy is an understatement of gigantic proportions! I have been learning so much about SPD through other blogs I read, but I have never heard of this. It sounds so interesting. I can't imagine the frustration you must have felt with Sloan attending a school where noone "got it." What an amazing thing you are doing as a family to ensure the best possible success for Sloan. Big hugs to you, Tisha!!

Diana said...

Dear Tisha,
My seven year old daughter sounds a lot like Sloan. She is in grade 2 and while doing very well from an academic point of view in a bilingual Mandarin program, she does struggle with the need for constant movement and sensory stimuli (sounds very similar to Sloan). She certainly has ADHD tendencies, but has managed to cope really well academically as she is also very gifted. However, this all comes at a huge price because she gets a fair amount of negative feedback from educational professionals about her need for movement. I appreciate your willingness to share about the program Sloan is currently enrolled in and will look forward to how this helps Sloan.It sounds like a wonderful program. Thank you for sharing.
CTG from RQ

Tina Tarbox said...

May God continue to bless your family! Sloan, I will pray for you during this time, and I, too, have high hopes that all your wishes and dreams will come true one day! I know you have a fantastic set of parents and an extended family - all who love you dearly. And, you are a precious child of God. With all that, you are beyond blessed already. Tisha, I'm a fellow mommy from way back on www.myadoptionwebsite.com - I still follow your blog so I can watch Sloan and Kensie grow up. I feel like that red thread ties adoptive parents together in a way also.

Love,

Tina (mother of Mei-Ling)

Mom to 2 Angels said...

That sounds awesome! It's amazing how many internationally adopted children have sensory processing issues (including ours), but it makes sense.

Anonymous said...

I am a school principal. I am sorry that you had such an unfortunate experience at your child's school. I hope that you can find a place where he will be embraced. I applaud you for what you are doing. You are fortunate to be able to do this. Please keep us posted.

Ann said...

Tisha...
I so applaud your ability to be Sloan's advocate, recognize his needs and help him to develop in an environment best suited for him despite what that requires of you!! Your blog was an inspiration to me even in dealing with the uniqities of each of my children. Great reminder to embrace our children the way God made them!!Many parents could learn a lot from you....I still think you will be writing a book someday!!
Take care....we will be praying!!
Ann Castro

Anonymous said...

How lucky Sloan is to be in a family that is willing and able to seek out the best for him. I have friends with a son who has more challenges than Sloan, and for a time they were able to get him the specialized instruction he needed (similar, or perhaps the very same program, to rewrite the brain connections). Sadly, the father lost his job this year and has not been able to find work, and of course the medical insurance doesn't cover any of it. They can no longer afford any of his therapies. When appealing to the state for therapy assistance for their son, they were told to consider a group home for him! And he's only 7 years old! God help all the children out there who aren't able to get the intervention they need to grow and thrive in our society.

a Tonggu Momma said...

Tisha, thanks so much for sending me this link. You are right, I hadn't read this post yet. And I am so glad that I did. We are So Very Fortunate to have an excellent kindergarten teacher for the Tongginator this year. She structures her class more like a first grade classroom than is typical to better help with the transition, but she also has sensory issues herself. She UNDERSTANDS. (She even borrowed the book "The Out-Of-Sync Child" from me to read further.) I am scared for next year, but I also know the Tongginator's teacher will do what she can to line her up with an equipped teacher for next year. If it doesn't work out, we WILL be homeschooling, just as you are. And I will definitely watch those videos. Thank you again!

The B Family said...

This is very interesting. I admire your willingness to do whatever it takes to help precious Sloan reach his full potential. I look forward to following Sloan's progress in Sloan School and the Brain Highways program. I have read a number of adoption blogs describing children with sensory issues; I hope that others whose children have similar struggles might find your blog and find some answers and inspiration. Will be praying for you and sweet Sloan.

Mary McG in TN said...

You have made the correct move for Sloan! You (as parents) have to be his advocate and a vocal one at that. I am a classroom teacher with 35 years experience. I have a full time autistic child in my classroom. I asked for him. If his mother had not known her rights he would be in a CDC class performing at a near zero level. There are some concessions made for him, but not more than any other student with an IEP. Please, please, research the laws concerning these exceptional children. When you place him back in a school have an IEP written for him ... then Katie bar the door ... you take the school to task to provide the appropriate (in your mind, not theirs) education within a normal classroom. With an IEP you can participate in the placement (including teacher) of Sloan. There should be at least one teacher per grade level that has the heart for the exceptional child. My student has a full time aide that redirects him when I am not able. My system has paid for the aide's continual training. It is the LAW!!!! The law is the same through out the USA. Please become versed in the laws and do NOT let someone make you feel inferior. You do the research and you will be surprised at what you find. You have made the first step in acknowledging and accepting that there is a problem. Do not think that once you leave the Brain school that all will be well. It takes time and a lot of patience to redirect behavior. (and that is also what autism is) My student has progressed by leaps and bounds. I think of him as gifted autistic. Who else says, "Pizza makes me nauseous."? Yes, he talks, uses a calculator, reads (not on level). sings the Star Spangled Banner (standing in one place), has one minute of silence, recites the Pledge and our school motto. Ninety percent of the time, if you looked in my classroom you would not be able to pick him out. Do we have bad days? Sure...oh my... but there is always tomorrow. Stay on top of the educational system. Remember, people are promoted until they reach their highest level of incompetence!!! God Bless ... and never give up the ship.

Mommy said...

Thank you so much for sharing. I have followed your blog for quite a while though I do not comment often. Our oldest son (bio) had SID but in his case overcame most of his issues with OT. He still has some issues but overall is doing much better. I understand where you are. Where you have been. You are doing everything you can do to help your baby. I am adding you and your sweet family to my prayer journal. Thank you for sharing something I know is very tough to share with the world.

day by day said...

Great post, Tisha! I think you probably know we deal with this with our Sophie. I have blogged about it in the past. It is very real and it can be quite frustrating. Lots of great OT's out there now that specialize in it!


thanks for sharing!
Michelle

Katie said...

Tisha,
Thank you so much for opening up your comment lines to us non-bloggers! Catching up on all your posts put a smile on my face! Though we talk over the phone there is something so special about your writing. I enjoy all of your stories, jokes and information and of course the pictures.

After visiting you in San Diego last week I got a greater understanding of what is all involved with brain highways. I can tell all of you that it is not easy. It is time intensive and takes much patience and dedication. I was so proud to see you and Chad working together as a team to cheer on your "champion"!
A champion he was! I attempted that "creeping" activity and it was exhausting!

Your place in SD is so cute and I really enjoyed spending some quality time with all of you! Hugs and kisses to all!

Love,

Katie

Anonymous said...

I followed you and your family's journeys for quite some time now. I live in China (Shanghai) and have always been impressed by the way God prepares the perfect matches for children/parents to be united ... and God did it again: the perfect children for the perfect parents!!! Thanks for sharing such an important piece of information that can help so many families around the world!!! You and your family will always be in our prayers!!!