Singing Through the Rain. That title has been used to describe my blog for over three years now, and I think this is the first time I have had such a hard time working and singing through my own rainstorm here at home. I’m struggling and at times I feel like I am drowning and there is no way out. But once I explain everything that is going on I think you all will understand the decision I have to make.
Here is everything that I have been dealing with in just a little over a week:
Last Monday we received a diagnosis for Adam. We have been waiting for months trying to figure out what is wrong and after so many wrong turns we are finally getting answers. This is just a brief explanation of the diagnosis Adam received:
When I got to the Psychologist’s office, she handed me a 10 page evaluation and told me that Adam’s case is very complicated. Here is the diagnosis (there are actually 3) and summary that is on the paperwork:
- Pervasive Developmental Disorder (PDD-NOS) vs. Autistic Disorder
- Sensory Processing Disorder (SPD)
- Mixed Receptive – Expressive Language Disorder
The Psychologist’s Summary:
“In Summary, Adam presents with a challenging clinical picture. He exhibits the symptoms on the Autism Spectrum Disorder, but ranges between the less severe diagnosis of Pervasive Developmental Disorder and Autism. Adam’s willingness to engage in social interaction and make contact is atypical for children with Autism, however, he also exhibits autistic tendencies in his repetitive behaviors, head butting, spinning, hand flapping, eating nonfood items, lining objects in a precise orderly fashion, engaging in repetitively, ritualistic behaviors, and atypical play behavior. There certainly is a Sensory Processing Disorder Present as well as the Mixed Receptive-Expressive Language Disorder, and there is overlap of the symptoms. However, early intervention is critical, and use of ABA therapy is strongly encouraged. Once Adam turns three, he will be eligible for services through the local school system. Continued monitoring will be important, as it is likely that Adam will have periods of significant improvement.”
Adam has Autism, but she is not really sure where he fits on the spectrum because his symptoms are so wide ranging and because of the fact that he is so social which is usually not normal in children with Autism. His SPD was officially confirmed and because the symptoms are very similar to that of Autism they overlap with his Autistic Diagnosis. You can find out more about these diagnoses on the links I provided above.
I wasn’t surprised about the Autism. I had a feeling that’s the direction we were heading especially as I watched his symptoms turn in that direction. I was surprised to find that he still has SPD. I thought that maybe the Autism was the answer to all his strange behaviors and food issues, but now that we know that it’s not the case and that he has both, it’s been hard to accept.
It’s been almost like grieving working through all this. I’ve cried myself to sleep almost every night and at times I have become so angry. Some days I find acceptance and other days I still struggle. I don’t know why God has trusted me with all this, I love my little boy, but it’s so hard to watch him and watch other kids and see him struggle and be so different.
I feel as though so many dreams we’ve had for our family have been washed away. I had always planned on sending Adam to a Christian school or homeschool him. Now? When he turns three he will have to go to a public school that can help him with his special needs. I had always pictured our family with three of four kids, but right now I can barely handle one. We can barely afford one. I don’t know if we will ever have more, only Adam’s improvement, God’s direction, and time will tell.
Recently, my husband has been involved in his Airman Leadership training for the military, so he was not able to come to the appointment on Monday with me. At night when he gets home he has piles of homework, so I’ve been dealing with a lot of this alone. Life lately has been a flurry of therapy appointments, phone calls, and worry. I’ve been working on trying to figure out what our best options are for Adam’s therapy, but a lot of what I’ve been doing has been dependent on his diagnosis. Now that we have that we have a better direction of where we need to go.
Tuesday, I got Adam’s new therapy schedule. They were able to up his therapy so that we can now go two times a week instead of once week. So we are going three times a week to Perry (30 minutes away) for feeding and speech and once a week to Macon (40 minutes away) for feeding. The problem is Tricare is having trouble with all these referrals going through. Last week Adam missed half his therapy because the referrals are messed up. Right now it’s still a mess and we are still getting it all figured out, but for now my contact in the referral office got us enough visits to hopefully keep us going until this all gets figured out.
For those wondering about the Marcus Center, I am pretty sure we are done dealing with them. We had too many problems dealing with them, and their wait list for the feeding program was 6-8 months long. Adam does have a new feeding therapist that we are working with now, I just met her this morning and she seems very knowledgeable in the area of feeding. I am pretty confident that Adam will do well in her care. I also found a therapist that is certified in Sensory Integration. She is in Macon and will be doing Adam’s OT. We have an evaluation with her in September and until then Adam will not be receiving any OT anywhere else. Once he is evaluated by her we will be adding her on as our 5th therapy visit per week.
Wednesday, I was diagnosed with carpal tunnel syndrome. I am still pretty devastated about it as I spend a lot of time blogging and writing and on the computer. I hear it’s pretty painful which it hasn’t been too bad yet, I have just been dealing with my fingers locking up occasionally and tingling and numbness. I am getting an EMG at the end of this week to find out how bad it it.
I am scared that I am eventually not going to be able to write anymore. Writing and blogging is my way of coping and dealing and I am scared that eventually my hands are going to get too bad to do it. It wouldn’t be so bad except I feel like I am so young to start with this now. I am only 25 and not only do I have carpal tunnel, I also have hypothyroidism, a hiatal hernia, multiple skin problems that I have to see a dermatologist for every few months, and recently I have had problems flare up from the problems I had with my birth with Adam.
It’s a lot to take in. You add up all the appointments I have to go to for those problems onto Adam’s therapy visits and there literally is not enough time in the week to get it all done. Not only that, but paying a sitter to watch Adam for all those visits tends to get expensive. So a lot of my problems get pushed to the side. I also am overdue for an eye checkup and several other checkups as well. They tend to go last on my list.
Thursday, I found out that my husband didn’t make Staff Sgt. He was devastated and I tried to be supportive. He worked so so hard and I was so proud of him. I still am. The average person that makes it is in the Air Force for six years and Jon has only been in for four so I think the averages had a lot to do with it, but its hard when so many of my friend’s husbands made it the first time. We were counting on that extra money and now he won’t get a raise for about two more years. It saddens me that my husband works so hard and yet does not get the acknowledgement and the promotion that he needs because of averages or because he has trouble taking tests. I understand it’s the Air Force way, but it’s still hard.
Friday, I found out that there was some mix-up and even though we had been told we were all set three weeks ago when we enrolled into the military’s EFMP program, we really had never been enrolled. A lot of things are pending on that enrollment and I have been so upset that people continue to drop the ball and aren’t doing what they are supposed to.
In order for Adam to get the ABA therapy he needs to help with his Autism, we have to be enrolled in Tricare’s extended coverage called ECHO. In order to be enrolled in ECHO, we have to be enrolled in EFMP. So we are still waiting on that. Once we get in with EFMP and ECHO we will be able to have a therapist come to our home to do the ABA therapy. The ECHO program will cover up to $36,000 a year in therapy and we have to pay an extra $25. a month to get it. It’s a good deal, it just requires even more money from us.
That was my week, and all week and weekend all I could think of is, How am I going to do this? How are we going to do this? How am I going to handle all these therapy visits and doctor’s visits? How are we going to be able to afford all this? The gas money, the extra insurance coverage, the babysitting?
We recently had to trade our car in to get something else. The car was full of problems and was going to cost a lot more to fix then to just buy a new one, so we traded it in. We also had to buy a second car. There is no way we could continue with one car with all the appointments and therapy visits we had and also get my husband to work. We also bought a cheap beater car from some friends who are moving so now we have two car payments. We knew things would be a little more tight now, but add in the gas money to go to all these appointments, plus what’s going into my husband’s car, and we are at about $500. a month just for gas!
We’ll make it. We always do, but it’s hard not to worry. I also worry about all the time we spend at therapy. I feel that poor Adam doesn’t have a lot of time to just be him, to play, or be a kid. He plays at home, but a lot of it I am supposed to be working on all his therapy stuff with him. I barely can keep up with that and the house on top of everything else and I am barely making it from day to day.
So on that note, I have come to a decision. It’s been so hard to make this decision because blogging means so much to me. My writing is so important in my life and I could never give that up, however I am going to have to slow down. I am giving up the business portion of my blog. For now there will be no more advertising and no more sponsored posts. I also will not be blogging on my 3-5 days a week schedule like I normally do.
I still plan to write occasionally when something is on my heart or when I have something to share, but I cannot do it like I have been for the past three years at least not right now. I hope and plan to do it all again eventually, but I have no idea when that will be. I have to follow what God is leading me to do and right now my place is with my family.
I will still keep the ads up that are currently there, and I will finish out any business I had going with some of you, but I will not be taking on anything new. I still plan on posting on my blog’s Facebook page: Singing Through the Rain. So if you are looking for updates or a way to connect with me please “like” that page. You can also comment here or email me anytime, I will still be checking all of that as well.
I hope to still write here occasionally so I hope you will still come back and check in. I appreciate you all and hope that you know that each and every one of you mean so much to me. All your comments, emails and prayers are the biggest blessing in my life. Thank you for being there and for reading about my life.