As a parent, there are things you are just supposed to do. If there were an official parenting handbook that they hand out at the hospital, many of these things would be in it....failure to do some of these things often results in looks of disdain from those parents (yes...we all know the type of parents to which I'm referring...). When you are dealing with a child with extreme SPD, even if you have absolutely no idea what is going on with your darling little bundle of joy, those looks come not only from other parents, but from family, doctors....it feels like everyone!
I'm going to share a little of our story and the SPD journey we have taken. Fair warning...this post will probably be pretty long.
For many of you, this story may seem eerily familiar, for others, you may wonder how we did not know, and yet others, you may think, why didn't they just bully through it. Long ago I learned that when parenting, I need to worry about my family and how to make things work best for all of us. The rest of the world does not live in our home and deal with our day to day blessings and challenges. The old adage about not judging until you walk a mile in my shoes? yep...it's true.
My darling little boy decided to enter the world on his own terms. I was scheduled to be induced on the fourth, but at 9:00 pm the night of the first (a Saturday night, no less), he thought it would be a great idea to throw my well controlled world out of whack. It is probably worthy of mention that early February in Maryland is not known for stellar weather, rather, the ground was covered in snow and the roads were icy.
By 10:00 pm, we realized this was not a false alarm, this was really going to happen. Our two older children, ages seven and 20 months, were soundly sleeping, with no idea the plan had changed. We called Plan B (Grand-mom) and kindly asked her to venture out in this awful weather in the middle of the night. She arrived around 11:30 to stay with the "big" kids and off we ran, with contractions coming hard and fast and the hospital 25 minutes away in decent weather, but remember it was downright gross out.
Racing down the highway, hoping that for once local law enforcement would be on alert and escort us, we realized that we did not even have a name finalized for our little guy. We also called my mom, who was due in the next day from the west coast, and told her that grandbaby #3 was making an early appearance.
I stumbled across the lobby of the hospital, stopping for a contraction or two along the way, and checked in with the teenager at the desk (she probably wasn't really a teenager, but since I swore this child was dropping out any second and she was taking her own sweet timing processing paperwork, there was no way she had kids yet!). From there, she sent me in to sit and wait! Seriously??? Then an even younger teenager came in to tell me she was going to take me back to make sure I was really in labor...ummm...3rd kid, can't breathe through the contractions, midnight in snow and ice? Did she think I had nothing better to do? (yes, I know she was just doing her job) It was just after midnight at this point.
I'll skip ahead a couple hours...Riley was born, 7 lbs 6 ounces with bright blue eyes and a full head of very dark hair. He was cleaned up and put immediately in an incubator as his body temperature was dropping. Shortly thereafter, he was taken to the NICU because he could not hold his temperature as expected. Thankfully, this stabilized within a few hours and we were able to take that off the list of things that we would worry about with our darling little boy.
On a side note, Matt went home so he could be there when the other kids woke up. They woke up wondering where I was and why Grand-mom was there...the whole thing happened while they were sleeping.
Once he was stabilized, they brought my new little darling in to visit me and we attempted to begin the feeding process. It seemed that he took to nursing quite well and easily, but we quickly realized that although he was latching on, his weight kept dropping. When I was ready for discharge, they nearly kept him as he had dropped significantly below his birth weight. He was continuing to latch, but was having trouble with his "suck". We attempted to finger/tube feed and bottle feed as well. He wanted no parts of any of it. They did discharge us home, but my mommy sense was on high alert: something wasn't working like it should with Riley.
We spent the next eighteen months battling feeding and sleeping issues with Riley. At 5 days old, while traveling back to the hospital to have Riley weighed and to meet with the lactation consultant, my mother commented that Riley had been awake for nearly 8 hours and had not napped at all. This quickly became a way of life for him, he slept 6-8 hours in a twenty-four hour period, rarely napping, and having extreme difficulty falling asleep nearly every night. During a visit to the pediatrician, we discussed this. Her comment? "All kids sleep...have you tried XYZ?" She was a wonderful woman (with no kids at the time) but I looked at her like she had two heads. My response? "Do you really think there is anywhere, any trick, any anything I have not tried to get this child to sleep??? I swear he just isn't tired."
At about 6 months, I remember telling the pediatrician that it just did not seem like he was hungry. Her response? "All children eat..." The part she did not add on? "You must be doing something wrong..." It was around then that Riley was referred to a feeding clinic as he had crossed the line into the realm of Severe Failure to Thrive. I tried everything, the doctors tried everything, and Riley just would not eat. He would go hours without eating and he never made a peep. From the outside looking in, he was the "perfect child". He never cried. He never fussed. He just sat there, perfectly content to watch the world go by. On the flip side, he did not eat, he did not sleep, and he was not making any movement toward normal developmental milestones...no babbling, no drooling, no teething...not working on crawling...nothing...nada.
Moving ahead to Riley's eighteen month check-up, the pediatrician recommended I contact Early Intervention as he had not met any of the developmental milestones. At eighteen months, he was not walking, although he was pulling up and cruising, but it seemed he was afraid to let go of the couch, the piano bench, the chairs, our hands... At eighteen months, he was also completely non-verbal.
In hindsight, I would love to have seen a video of my face when she told me these things. I looked at her rather blankly and said, "Oh...I guess he should be doing those things by now." When they do not eat well, if at all, or sleep well, if at all (so what little food we could get in him was burned off because his body did not get good solid periods of time to shut down and conserve energy), who cares if he isn't walking or talking.
By this time, we had worked through the pediatrician, the University of Maryland Medical Center Pediatric Specialty Clinic (for feeding issues, etc), and several areas of Johns Hopkins Hospital and Medical Center. After standing by as my little guy was poked and prodded, tested, watched and poked some more, the best answer we were given was that Riley had BMS. Never heard of it? It's Bad Mommy Syndrome: read as, "we cannot find anything medically wrong with your child, so you must be doing something wrong."
I am guessing it goes without saying that I left many a visit in tears. I had this precious little boy whom I could not help. He was full-term. He was over 7 pounds when he was born, but he weighed a mere 14 pounds on his first birthday. When he started with Early Intervention, he weighed in at 16 pounds. He had finally sort of started toddling on his own, but he was not speaking, not babbling, not drooling, nothing...nada.
I was exhausted, I was heartbroken, I felt that I was letting my other children down by putting so much time and energy into keeping Riley off a feeding tube and out of the hospital. I had left my career of choice to give him all of my attention, I had talked to doctors, I had read and read, and nothing we did was making a difference...he still was not growing, gaining weight, or moving toward typical developmental milestones. I was concerned about bringing in yet one more team of people to make me feel like I was failing as a mother...I did not know anything about this Early Intervention nonsense, but resisting it apparently was not an option, so I hunted down the number and called.
From the first phone call, I knew this was going to be different. The woman on the other end of the phone listened to me. For the first time since Riley was born, I felt somewhat validated and that perhaps someone was going to help me figure out what was going on with him rather than subjecting him to a zillion tests to tell me everything that was not wrong with him (he did not have Celiac Disease, he did not have Cystic Fibrosis, he did not have this or that...).
I am going to end this chapter of our lives here and move forward in another post. Those of you who have lived with and/or learned about sensory issues, problems and the like have probably picked up on many SPD clues throughout this post...with the 20/20 clarity of hindsight, I can see them too, but up to that point, I had not heard anything about sensory processing this and that. As I learned along the way, you do not know what you do not know. It sounds simple and basic...but it is true nonetheless.
Until next time...have a fabulous day!!!
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