Diagnoses and Decisions
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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.
Dear Friend I just have no words. I honestly cannot imagine how overwhelmed you feel. I wish I lived closer so I could help or just get together with you sometime. My favorite part of this post was when you wrote these words: “I don’t know why God has trusted me with all this…”
But the truth is that He did. And because we know that He did, we know that He knows your hands, your mind, and your emotions are capable of handling it all. With His strength. You are an amazing mother.
I think that giving up the business side of your blog is a very good step, but I’m glad to see that you are not going to quit blogging completely. I love reading your blog!!!!
Oh girl. I wish I could come take you out for coffee and let you cry and vent your heart out. I know that this has got to be so much on your shoulders right now and I can’t imagine dealing with it while the military is keeping your husband occupied and tied up at all random hours of the day and week. YOU ARE A STRONG woman and there are so many of us praying for you. I don’t know how do it all, but I completely understand about having to give up the business side of blogging. Write when you need/want to and we’ll be here praying for you in the meantime. HUGS!
Hugs. That’s about all I can squeak out right now. Lots of hugs. I am a newer follower of your blog; found you through the grapevine, and am a 25 year old AF wife myself, so I thought I’d follow along. While I have one little one, I cannot imagine dealing with what you’ve just had handed to you, and can only send my thoughts and wishes for the best of luck. I have dealt with the heartache of missing SSGT, by 3 points, the first time around, and suspect his timing had something to do with it as well. Tell him to keep his chin up. He’ll definitely make it next time, and probably pass with flying colors. I’ve also had a lot of firsthand dealings with everyone dropping the ball for medical care, PCSing, etc. So frustrating. You’ll get through it. I haven’t followed long, but I also admire and think you made the right decision in regards to blogging, for what it’s worth. So again, lots of hugs, and keep your chin up.
I can’t even begin to imagine what all you’re going through emotionally. Just from reading your posts, I know it’s so, so hard. I think you made a very wise decision in not doing the business side of blogging and not posting quite so often anymore. I hope it gives you some extra downtime with your husband and little boy.
Something God keeps bringing to my mind lately is this: God doesn’t call the equipped, He equips those He calls. You may have heard it before, too. No matter what, that much has always been true. You are not equipped to handle all of Adam’s problems, but God is. And He can – and will – give you what you need to help him and get through this. I know you know all of this and I’m sure going through these things with your health and Adam’s has made you grow close to Him. Stay there. Stay in prayer. He’ll help you get through this, but it’s still probably going to be hard.
My prayers are with you Kathryn. I wish there was something I could say to make things easier for you since you have a lot on your plate. But since anything I say isn’t going to change your situation, I’ll just say that my thoughts are with you. *Hugs*
My prayers are with you Kathryn. I can not imagine all the obstacles you are facing right now, but trust in the knowledge that so many will be praying for your precious family.
I’m praying that you’ll find answers, comfort in disappointment, patience and peace, and strength.
My three year old is autistic and was diagnosed at 2 1/2. My husband was overjoyed because it explained everything that was going on with Daniel and I just barely made it out to the parking lot before I started sobbing so believe me, I understand what you mean by grieving. I understand all the therapy visits, all the doctor’s appointments (I have a number of health problems as well), and having a kid that is a full-time job in itself.
You’re going to make it and things are going to work out. I honestly couldn’t see this in January but it’s ended up being a blessing. My son is in a public preschool class for ABA kids, has a teacher who loves what she does, and has aides who are wonderful faithful women.
Email me if you need someone to talk to.
*hugs* I sent you a FB message.
Oh Kathryn I am so sorry you are going through so much. I wish I could be there to hug you and let you vent. Sean and I are praying for you and your family… we really are. I don’t even know what to write here. When I found out that Adam had autism and you have carpal tunnel last week I have to be honest… I cried for you. Sean and I talked about how it just doesn’t seem fair. I know God is in control and He has His good reasons for things, but my finite mind just can’t wrap my head around it. I hope you are drawing closer to Him through all of this… I wish I could write something better…
Don’t worry about posting less. You just write when you need to and let the rest go. I will be here whenever you write… and I’ll continue praying…
Ive so enjoyed and been encouraged reading your blog. I’ll keep your family in my prayers as you learn how to handle this latest challange in your life. May God provide you the strenth needed daily to best raise Adam and love your husband. He will … he always does.
Thank you so much I really appreciate that. God Bless!
I am praying for peace and strength for your family! I cannot imagine how you feel.
I was diagnosed with hypothyroidism a little over 2 years ago….and it has been quite hard. Are you on medication for it?? I also had some “skin issues” related to the thyroid problem, not sure if you’ve looked into that. I have seen that as I change my diet a little bit, it helps with the thyroid. Sugar highly effects the thyroid gland, so does gluten, so I have taken as much of those out as I can. Also flouride effects it as well, I use a special toothpaste that is fluoride and sugar free, called Spry….it’s great, and don’t get fluoride treatments at the Dentist!
Also, have a friedn who has an autistic son, and has recently found that GAPS is helpiing him in leaps and bounds! Have you heard of the GAPS Diet?? If you have not, maybe you could look into it. The changes she has seen in his behaviour over the last year have been astronomical!!
Love and prayers are with you.
Thank you so much for commenting, and for your encouragement I really appreciate it! I have had no problems with my thyroid since starting on the synthroid for it. They check my blood levels ever 6 months and monitored me throughout my pregnancy, but other than that no problems since starting on the medicine! I am sorry it has been a difficult journey for you, it’s definitely not fun.
I have not heard of the GAPS diet. Problem is Adam barely eats many foods. He lives on crackers and baby food mainly. I can’t imagine any sort of diet would work at this point until we can get him to eat more, but I will definitely keep this in mind for the future. 🙂
That is a lot of weight on your shoulders, but I still think you handle it with such grace. I will be praying for you guys every time I think of you!
Thank you Erika, I appreciate it so much!
I feel terrible that I haven’t been around in so long. I had no idea what all was going on with your family. I will most definitely start praying for you all. I can’t even imagine how devastating this week must have been for you. I wish I could give you a hug. I would love to say more, but school starts tomorrow and as the teacher, I think I have to be prepared. 😉
Real quick- I totally respect and understand your decision to slow up on the blogging. I had to do the same thing (unintentionally) over the past year and a half or so. My life has just spun out of control and there is no time for blogging and keeping up with my friends. I get so sad thinking about all that I’m missing out on and all that is happening in my life that goes undocumented when I used to be on here daily for a couple hours, blogging and commenting. But such is life. I truly hope to get back to blogging some day, but it just doesn’t fit in right now. My friends have all been very understanding, and I know all of your friends will be, too! Love you!
Thank you so much for the very sweet comment. I totally understand your decision as well and I did take a break for a good month or two and then got back into it. I have a heard time staying away with all the thoughts and ideas swirling around in my head! 🙂 Thank you for your prayers. Good luck with everything!
*hugs* I’m sorry to hear you and your little family are having a difficult time.
My son was diagnosed with Tuberous Sclerosis, a rare genetic disease at 7 months old after having seizures. He is now 18 months old and I still feel overwhelmed by all the appointments, therapies, and Tricare stuff we have to deal with on a weekly basis. The only thing that has helped me not to completely lose my mind is to pray constantly. Also, finding a support group to meet other TS mamas has been a huge help for me. Most of the time I only get to chat with them on FB but it helps sooo much to know someone else understands I’m dealing with. Maybe you should try to find a support group.. Once you get enrolled in the EFMP they could probably help you find one. Also, you should qualify for respite care (to give you a break evey once in a while or to help if you have an appointment you cant bring your son to) through the EFMP. Make sure you ask about it.
Praying for you, hun!
I have checked back to your blog a few times, but did not know about all the problems with your son. I am SO sorry. I will be praying for you and I really appreciate the tips. We are in EFMP now and things have settled down a little with therapy about 9-10 times a week. I have found a lot of support through online and even some local. Facebook has been a huge help in that department. Thanks for sharing and commenting, I appreciate it!
Dear Kathryn, though you only worked for me for a very short time and my life was so crazy at the time trying to run 2 restaurants, I didn’t get to know you very well. But since becoming FB friends and reading your blogs I feel like I could call you friend. I have often thought of you and your family and all that you are going through. And I’ve often wished that I had your faith and trust in god like you do on a daily basis. You always give thanks to him for everything. I often forget. I have prayed for you over the last 3 yrs more than you’ve probably thought of me. And that’s ok :0) for whatever reason God has often placed you in my heart and mind and a prayer was said for you. Sometimes short and sweet and others long and thoughtful. You have so many friends that love and care for you. You truly are lucky. I will continue to pray and ask for extra blessings for you and your family. Thank you for inviting us all on this journey with you!!!
Thank you so much for this sweet note and sorry it has take me so long to reply. I appreciated this more than you know and I want you to know that your sweet encouragement on my blog and Facebook comments have meant a lot. Thank you for the prayers, I wish we could visit together more often! 🙂
Oh no… you poor thing! This is a lot to take in in one week! So many things that I can respond to but I will keep this short.
(Hugs) for everything!
Keep encouraging Hubby! We are 10 years in and going strong so don’t let the 6 year average stump ya. He can make it, if this is where he wants to be. Maybe a change of career will come along and surprise you both.
Try these to help get around your carpel tunnel:
I’ve never tried them, but I just thought a voice to text program might help you continue your blog voice without continued injury. (All within reason…) I can imagine your frustration in this area.
Thank you so much for your advice and encouragement! He will try again next year of course and hopefully will make it! As far as my arm, I saw a specialist and it actually turned out to be Cubital Tunnel Syndrome, which requires surgery. Was supposed to have it already, but I keep getting sick, so hopefully in January. Thanks again, God bless!