I’ll tell you how terrible.  I logged in probably 15 hours in the past 3 days just trying to get coverage for speech therapy in 2014.  It’s March.  That means that we’ve had close to 10 sessions already as Luke goes each Monday.

He has private OT and Speech, and it’s been several months where we’ve had no problem.  Since my insurance company takes ages to get around to letting you know you’re not covered, I just found this out recently.  I’ve spoken to 5 reps this week alone and 4 of the 5 have been extremely unhelpful, ignorant to what their own company offers, or have acted annoyed with me.  Oh, I’m sorry to bother you.

I first called and was told that they don’t cover learning disabilities.  Luke doesn’t have a learning disability.  I was then told they don’t cover “just a speech delay”.  Ok, my son is almost 2.5 and says zero words BUT used to say 10 words.  That’s a speech regression, which is listed as being covered in your clinical policy bulletin 0648 that you can’t find on your own website.

I was told to have my provider resubmit everything under a different code, provided did, denied again.  Called back the next day, same thing.  Called back the next day, same thing.

Today I called and finally talked to a somewhat helpful rep that said our provider can send a medical necessity letter which will be “considered” for future visits.  The appeal for the previous visits will be decided within 30 days.

What does this mean?  That my son will not have his private speech therapy for at least a month.  I’m sure longer, if ever again.  If the previous visits are denied, I’m looking at $2000 out of pocket, and that’s just for the past couple months.  We wouldn’t be able to afford future visits, sadly.

We have at home Early Intervention and to be completely honest, he does a lot better with his home speech therapist.  He turns 3 in early October so once that happens, Early Intervention is over.  That leaves 3 months with no speech therapy, potentially.

Unless he’s diagnosed with autism or another recognized neuro disorder, he will probably not be covered.  The wait list for the developmental pediatrician who would diagnosis him is 6 months. Some days I think he may have ASD (Autism Spectrum Disorder), some days I think not.  I know that there has been specific findings recently regarding SPD being its own disorder and it’s “in progress” but I challenge the people who make this decision to live with a kid with SPD for a week.  Then tell me it’s not a disorder.

My health insurance is $400 more a month than it was in 2013 and I have less coverage.  Makes a whole bunch of sense….

Half way through my maternity leave with his little sister, Luke was diagnosed with Sensory Processing Disorder.  My first reaction was “What the heck is Sensory Processing Disorder?”  When I told our family and friends, I actually kept messing up the name because I was forgetting the words to it.  Now I’m basically an expert on everything having to do with the stupid disorder.

I had a pretty normal pregnancy with Luke.  I threw up a lot, felt pretty lousy, but nothing out of the ordinary as far as bleeding or any complications.  I went into labor on a Monday evening, the hubs and I went to the hospital, I got an epidural immediately.  I had progressed so fast from my 39 week check up earlier that day that the on call doctor said she thought I’d have the baby before midnight.  I didn’t start pushing until about midnight and four and a half hours later, I was still pushing.  His head was turned to the left and he couldn’t get past my pelvic bone.  The doctor said that they could provide assistance with either forceps or the vacuum, she recommended the vacuum based on how the baby was positioned.  As this was our first child, we took her recommendation.  After several more doctors and nurses came into the delivery room, it took another half hour for the baby to come out.  I remember the doctor who was using the vacuum being really small and she was very focused on what was going on and not telling me much.  Later I found out that she was pulling so hard that she had her foot up on my bed for leverage.  When the baby came out, he wasn’t breathing, they took him right away to the other side of the room.  We didn’t know what was going on but after some time, I saw his feet moving and breathed a sigh of relief.  Luke wasn’t in the NICU or anything like that but looking back, his birth was definitely traumatic.   At 29 months, he still has a large bump on his head from the vacuum.  Originally the doctors said it would go down which it has a bit, but it’s definitely noticeable.

As a baby, he didn’t “overly” cry.  He slept ok the first few months, and mostly slept in a rocker where he was at a slight slant.  He never liked to lay flat.  He started to be a more difficult sleeper around 4 months old, and wanted to be held or cared for overnight.  He woke up several times a night throughout the first year and only would go back to sleep with milk or water when he was old enough to have it.  He slept in bed with us as he woke up so many times that we were just exhausted.  We tried to put him in his crib and he would bang his head so hard on it that he’d get bruises.

He was a good eater, nursed well, ate from a bottle, started on solids around 4 months and ate anything we gave him.  He loved being on his changing table as a baby and probably closer to a year old, started hating it.  We just thought that he was annoyed at getting changed.  

A good friend of mine had a little boy about 7 weeks before I had Luke.  I remember when he was 4 months old and started rolling over that he was so strong.  Luke never really rolled over.  He would roll from his back to his tummy, but not from his tummy to his back.  And never would roll with force.  He didn’t start crawling until right before he turned one.  He just didn’t seem as strong as my friend’s son, but I chalked it up to “all kids are different”.   Our pediatrician at the time wasn’t concerned that he was hitting milestones late because he was hitting them at the appropriate timeline in between each milestone.  At a year and a half, we took the quick autism screening quiz at the pediatrician’s office and only answered yes to a couple of items so there were no red flags.

We found out I was pregnant the day after Luke turned one.  We knew we had to get him in his own room before the baby got here, so at 15 months we tried the cry it out method.  It worked!  For 4 straight months, he slept 12 hours through the night in his crib in his own room.  Then the week before his little sister was born, he started banging his head on his crib.  It’s like he knew something was about to change in the house.

Dad started sleeping with him so that I could get my rest the final week up to baby sis coming.  We argued a bit about it, but since he was banging his head on the crib, we thought it would just be a temporary arrangement.  Baby sis was born (no complications – yay!) and for the first few months, she was in my room with me, Dad and Luke were in the guest room.  The sleeping situation was right back to being terrible.

About half way through my maternity leave, I noticed that Luke was just acting “off”.  He finally started walking right before his sister was born (he was 19 months).  He was of course wobbly at first but then he started to just walk into things, fall down, look like he was drunk stumbling, and most concerning, was banging his head on things for what we thought at the time was no reason.  He’d bang his head on the floor, the wall, the couch, us…anything he could get near.  I researched the crap out of it online, and all I could find is that some kids his age do it to either replace a pain elsewhere or do it for attention, anger, frustration.  It got to be so frequent and concerning that I made an appointment with our new pediatrician (we started with her at about 15 months) and kept a log of how many times he was banging his head a day, how many times he was falling or walking into things, and his sleep schedule.

We went into the appointment and I was fearing the worst.  Someone mentioned that maybe he’s having headaches….I feared a brain tumor.  After a few minutes of talking and looking over the log, our pediatrician said the following:  “It’s my job to come in here and tell you what I think is wrong.  (I was literally about to faint)  Based on what we’ve talked about, I’m going to first rule out a brain tumor.”   I almost cried.

She went on to say that she believes that what is going on is something called Sensory Processing Disorder.  She said her son has it and is 5 now, when he was 2 he was diagnosed and they went to OT for 6 months and brushed him and he’s much better now although he covers his ears sometimes.  At this point, everything is a blur to me.  I remember thinking “disorder?” and “what is OT?”  She referred us to an Occupational Therapist for an evaluation.

After the appointment, we went to the sushi restaurant that we always visit when we take the kids to the doctor.  It’s in the same building and we used to live across the street so we know the ladies who work there.  When we sat down, I felt so overwhelmed, scared, nervous, protective.  My husband said “Are you happy now?” and I was floored.  Happy about what?  That our son has a disorder?  He said we’ll at least it’s not a brain tumor.  Looking back I’m sure he doesn’t even remember this conversation, and he never would have said that knowing what he knows now.  Granted, of course we are lucky that it’s not a brain tumor but he was shrugging the diagnosis off at the time.

The entire time we were at the restaurant, I may have had 2 bites of food because I was sick to my stomach, I was looking up Sensory Processing Disorder on my phone.  Talk about hitting the nail on the head.

Problems sleeping. Irritable about getting dressed.  Motor delays. Arches away. Cannot calm self. Floppy body. Clumsy. Weak. Oversensitive.

I called my mom and remember her exact sigh.

I called a couple of places that afternoon and found an occupational therapist that was able to see him the next day and accepted our insurance.  That night I was on my phone for hours researching Sensory Processing Disorder, let’s call it SPD now since I am familiar.  So many things I read were exactly my little boy.

Falls asleep when there is too much going on around him…We wondered how Luke slept so terrible at night, but fell asleep his first Thanksgiving when we had a house full of loud people.  Fell asleep at a 4th of July parade.  Fell asleep at a wedding reception.  Just shuts down.

The next day we took him to the Occupational Therapist (now I know what OT meant) and she confirmed that she thought he has SPD.  She recommended he start OT right away.  Carrie was now Luke’s OT. For the remainder of my maternity leave, I took him every Monday and Wednesday.  Once I went back to work, he started once a week.  The evaluation was scary and uncomfortable.  He hated it.  Banged his head a lot. Opened and closed the door 100 times.  My husband and I were just freaked out.  This completely blindsided us.

I told my friend who is a teacher.  She suggested Early Intervention which I had never heard of.

I felt so overwhelmed and so scared, not knowing what the future would be like for us, for Luke.  Those first few weeks I spent hours upon hours on the internet, I found a SPD community board which was probably the most helpful therapy for me as I was discussing everything with other SPD moms.  I still am on the board 8 months later.

The beginning was terrifying, I felt unsure of what I was even explaining to friends what he had been diagnosed with.  I felt embarrassed, not for myself, but embarrassed that people might think differently of Luke for being different.

Did I mention that I also had a 6 week old baby girl?