Hadley

Four and a half months between posts isn't bad, right? Ugh. I can't seem to get it together.
I decided I needed to write and to write about Hadley and what's been going on with her speech delay and other issues.
Ever since Hadley was about 8 months old, I knew something wasn't completely right. We assumed for a long time that her tongue was short and would just need to be clipped. We thought this because she never took a binky and was very picky about what foods she ate (we thought she had a hard time chewing and swallowing with the short tongue.) She was a quieter infant, but I never thought anything about it. It was around 18 months was when I noticed that she wasn't speaking at the rate that other 18 month olds were. We talked with her pediatrician, who is a great guy, and he said to keep an eye on it and if, by the time she was nearly two, she wasn't speaking, he could refer us to the infant toddler program for speech therapy. Also during this time Hadley seemed to have a severely shortened attention span. Not like a regular toddler attention span, which is short enough, but the kind where she couldn't handle certain things for even a second. She also didn't respond to questions and never seemed to understand what we were saying. We had her evaluated by the state when she turned two and they recommended standard in-home speech therapy. We also found a private company and enrolled her there too. After a few therapy sessions, her therapist wondered if we'd be interested in having her checked out by an occupational therapist for sensory processing issues. I thought that was crazy, but the more I read up on it, the more I realized the Hadley met nearly every single thing on the basic checklist for SPD.
She was evaluated by an OT through the state as well as an OT through the private company we were using and they both agreed that she seemed to have sensory issues in addition to the speech delay. We learned that one usually follows the other. The sensory issues cause her world to be very tight and overwhelming, which can be the force behind the speech delay. We were also referred to a physical therapist to have her tongue checked out. Turns out the tongue is perfectly fine, but the PT found that Hadley's sensory issues may be eased by craniosacral therapy. I'm a firm believer in things like acupuncture, so I embraced this idea and it's been good for Hadley to deal with someone touching her head for half an hour every few weeks. Her PT believes that there is a connection between kids who have sensory issues and the amount of time they spent in the birth canal. Hadley was in the birth canal for WAY too long, in my opinion, and I can't help but wonder if her PT is correct in this theory.
Throughout this last year, Hadley is seen regularly by two speech therapists, two occupational therapists, and one physical therapist. She also goes to a weekly tumble time class that helps her focus and play in a structured setting with other children have issues like hers. You would think there would be significant improvement, but there just ISN'T.
I am feeling absolutely helpless now. Hadley still can't put together basic parts of speech, her sensory issues seem to be getting worse, and her attention span, while better than it was, is still a major issue. One of her OT's has said that she behaves at about a 24 month old's level. Her speech comprehension and her skills for following directions are minimal. Today, her speech therapist said she had never seen a child who could talk more than they could comprehend (Hadley is a "parrot" and can say almost anything we say, but she doesn't understand it and she can't string any of those words together to form a sentence.)
There are good moments, like yesterday she said, "Ice cream is cold," and I almost fell over.
I saw a quote by Teddy Roosevelt (on pinterest, of course) that said, "Comparison is the thief of joy" and boy was he right. I spend HUGE amounts of my day fighting the urge to compare Hadley to every single child I see. Look at that 12 month old, who is requesting something. That 14 month old calls his parents mommy and daddy. That two year old is potty trained. Etc. Etc. Et-effing-cetera.
Parents of children with special needs were not meant to work full time. Every time I have a little bit of progress, it's interrupted by me returning to work the next day. I have no rhyme or reason to my schedule, I'm just gone for 9.5 hours, 5 times a week.


My fears:
That Hadley will never get better.
That she will not be able to attend school.
That my marriage will continue to be stressful because of this.
That the new baby will be on the permanent back burner and won't get to experience the kind of attention we gave Hadley when she was an infant.
That I will have to continue to work full time and will never be able to fully devote myself to Hadley's progress.
That I will lose even more faith than I already have.

I'm not sure why I felt like I had to update my neglected blog with this sob story, but I think I just needed to get it off my chest. We pray EVERY single day for Hadley. She's had multiple blessings and we've even fasted for her. I'm trying so hard not to lose faith, but I can't watch her struggle like this. It's too hard on her, on me, on our marriage, on this unborn child. I hate asking for help, but if we ever entered your mind, please say a prayer for our little Hadley that she can grow and we can zero in on better ways to help her. I just don't know what else to do.