New Diagnosis: Sensory Processing Disorder (SPD) AND ADHD. I Have So Much More to Learn.
It has been quite awhile since I've blogged on a regular basis and since I have written about my life…my family and our little world. I miss the frequent interaction with other bloggers, commenters and other moms in the blogosphere since I've been preoccupied with life. I've still been doing some product reviews and sharing savings and my experience trying new things….but just haven't had time to do the personal blogging I once did. I am hoping to change that.
A lot has happened this past year. I may have already posted that my husband lost his 20 year job suddenly and that we ended up moving out of state for his new job. It took us 6 months to sell our old home and we took a major financial hit doing so. We are still coping with that and trying to recover financially. I am working at my same job, but work from home now - which is a mixed blessing because while I enjoy working in yoga pants and a t-shirt, I really miss my coworkers and the daily social interactions of being at the office.
A great deal of our time and energy went to moving and settling in. Our little guy did surprisingly well with the transition of moving and starting a new preschool/daycare….at first. He has very strong SPD - Sensory Processing Disorder and the new school had low class size and teachers who were former special needs teachers who went into teaching preschool. It was a fabulous program…but then they lost state funding and closed. This was the only center with low class size for typical kids and kids with some special issues both. All hell broke loose not long after…
I.J. had been going to regular OT (Occupational Therapy) for his SPD back in our old state. It was 3 months before we could get a referral and get into OT here in the new place. I believe the absence of professional OT (despite the sensory diet activities we try to do at home), the transition of the move, and now the loss of his "beloved school" and new best friend finally hit him after a couple weeks of attending the new school. The behavior problems started surfacing and each day began growing a little worse. He began having sensory meltdowns more frequently and going into fight or flight mode - dashing out of the classroom or spitting, hitting, kicking at times. It got ugly. The small school he was going to just became unable and unwilling to go above and beyond to help him, despite all of the information, tools we gave them to incorporate sensory activities into his day, or to help ward off meltdowns and how to deal with them if they did occur. So we had to pull him out of there and move him to another place.
Meanwhile we were dealing with the school system's special services agency to get I.J. evaluated for services, see if an IEP could be issued for a preschooler so that he'd be in the system and preparing for Kindergarden next year. We wanted to be proactive and help our precious son who is struggling so much. We were denied an IEP and special services due to SPD not being a "covered educational disability" in our new state. So we got into new private OT - FINALLY and thought that would help. For awhile, it began to make a difference. I.J. liked his new school and seemed to be coping, despite the larger class size. They have many sensory rooms and activities that seemed to really help. They agreed to do the Willbarger brushing at school, give him some heavy work activities, etc….All was well with the world again…we were falling into a routine…settling in to our new home. Life was good…or so it seemed….
Then the problems began to surface again….and they started becoming worse. He was not only dashing out of the class, but screaming, spitting at teachers and staff. He began head-butting the director of the center when they would try to hold him and calm him. He would pull stuff down, throw things, try to hit teachers or bang his head on the wall. We were frequently called and I would have to leave my job and go get him and bring him home. At home he would calm down usually and be okay if I kept things pretty low key for him. We did begin to notice a lot more defiance, arguing, anger outbursts, and sensory issues flaring up. The OT began having problems getting him to focus. We had been told he may have ADHD by the special services psychologist/evaluator and our new OT. We had to really push the new pediatrician to get a referral for an ADHD evaluation. And Push.
We finally got in to see a private child psychologist and received an evaluation. We were told our son has not only SPD, but he has been diagnosed with very strong ADHD and Oppositional Defiance Disorder (ODD) tendencies. They did an IQ test as well, and rated his intelligence superior. At 4 years old, he is already doing basic math, beginning to read, writing, and is advanced with verbal skills. He's Korean and came to the country at almost a year old and has more advanced language skills than most American kids in his class. LOL. Anyway, we were recommended to try medication and therapy with the child psychologist. We were very reluctant at first to try medication but we were hitting a wall with any other solutions.
He has been on medication for about 3 weeks now. We have seen some improvement in focus, and the behavior issues have changed some. However, they have been enough of an ongoing problem that he is now being terminated/expelled from his current preschool/daycare. We have less than a week to find new arrangements. The way that we were notified by the school was very unprofessional, and via a cowardly email from the owner. They wouldn't even meet with us in person to discuss it. That was very humiliating and upsetting. Somewhere along the way they stopped doing the therapeutic brushing, stopped letting him have his weighted blanket, his little photo album of family photos to soothe him at nap time - or doing anything to help give him additional sensory input and wonder why his behavior has deteriorated. I think they just gave up on him. It breaks my heart and frankly, pisses me off. We feel like many times if they had followed our and our OT's suggestions - they could've noticed the subtle signs of a sensory meltdown coming and pulled him aside for a bit until he could've calmed down and then returned him to the room, rather than calling me to just bring him home so often. It seems to have reinforced negative behaviors and made him feel anytime he wants to come home - it is okay to melt down and act out. They have even admitted that but seems like they've given up. I am desperately trying to keep my job. While I work part-time, I make a high rate of pay and it really helps pay all of the medical bills not covered by insurance and for his school and extras we have needed.
So we are touring schools this week, talking with a childcare referral service/advocacy for children with special needs, and waiting for the special services director to take I.J's case to the board for reconsideration for services and help. We are praying we figure something out by the end of the week. I have been missing too many hours of work and worry about what is to come if we don't find a solution soon.
I.J's Nurse Practitioner (NP) is researching the medicine with a new child psychiatrist they took on staff and we may change the meds again. We may change from the passive child psychologist to a more progressive, active psychiatrist. We have voiced concerns that our son is growing more reclusive, wanting to stay home all the time, avoid social situations and that his socially inappropriate reactions/behaviors cause us to wonder if he isn't somewhere on the spectrum of Autism. We have been told previously that providers (OT, psychologist, doctors) didn't think he had Autism or Aspergers Syndrome, it looked more like ADHD but we need to keep a close eye on signs/symptoms of these, and Bipolar disorder. So his NP is asking the psychiatrist about when/if we should look to a neurologist to help diagnose this or if we should try new meds first and see what happens.
Meanwhile -- he has good moments, good days, where he seems like a totally "normal" child (whatever normal really is! LOL). He has periods of time where he can focus, attend well, and play quietly for an hour or more….and other days - he is moody, heavily seeking sensory input, combative, argumentative, cranky, whiny, reclusive and doesn't want to leave the house, over tired because he can't nap. He sleeps well at night but wakes at 530am daily, wired and ready to go. Between all of the appointments, phone calls, driving to/from these appointments, dealing with teachers, directors, doctors, providers…..I am exhausted. I am drained. (As an older mom, I am dealing with peri-menopause already - so this just adds to the fun and excitement! LOL)
I love my sweet, beautiful, precious, sensational, funny and unpredictable boy. My heart aches for him because I know all of this is affecting his confidence, and brings him anxiety - knowing he wants to behave or be calm, but he simply can't. He has such a hard time regulating himself, calming and controlling himself. I want the world for him. He is so funny, bright, and so intelligent. He is so cute and precious. He has so much to offer the world. I just hope to figure out this puzzle and get him and our family the best resources, best treatment solutions and best outcome possible.
Just when I thought I'd learned a lot in the last year about SPD…I need to start learning about ADHD, medication and dietary supplements. My head is spinning.
If you've read this far…and you are a spiritual person, we ask for your prayers for our son and our family. Thank you so much.