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Thursday was our first visit to The Marcus Center. The night before I wrote down a few of my thoughts…
“I sit here the night before we head to the Marcus Center for Adam’s evaluation. My mind is overwhelmed with what tomorrow will bring and with all the possibilities. I’m nervous. My mind keeps going over and over all the questions I know we need to ask and I keep checking and double checking to make sure we have every piece of paperwork and medical evaluation in my folder so that they can get the entire picture. I’m realizing this could change our lives forever. It’s both scary and hopeful to me.“
Little did I know how true that would be. Our appointment did not go as planned. In fact it went very badly, but it was more the information that we got that changed everything. The questions we had were only multiplied and the answers we were looking for were nowhere to be found. Life had changed in that small instant of a day and I have been figuring out how to come out on the other side of it ever since.
We woke up early Thursday morning (my husband got off work so he could go the appointment with me), and left at 8:30. The drive to Atlanta is about two hours and on the way I started writing down all the questions we had and needed to ask. We were both nervous. We had no idea what to expect or how this would go.We got there around 10:30 and only had to wait in the waiting room about 10 minutes. They weighed Adam, checked his height and left us in a room that looked like a typical doctor’s office room. When the nurse practitioner finally came in we learned there had been some miscommunication. We thought we were there for a feeding evaluation to get Adam into their feeding program, but apparently I had misunderstood. Before you can get into any program at the Marcus Center you have to have a general developmental evaluation.
Our hearts sank lower than I thought possible. We were both upset that Adam would not be getting the feeding evaluation we had been waiting months for – at least not yet. It was very disappointing. We spent about an hour and half answering her questions, asking questions and watching her observe Adam, but the answers we got only served to bring even more questions to mind. Here is what we found out:
Feeding – Adam qualifies for a feeding evaluation. She is positive he will get into their out-processing program, however he does not qualify for the in-processing program that we wanted him to get into so badly. The 8 week intensive program is only for children who have serious health problems such as cancer or heart problems. We will have to go back to Atlanta for the feeding evaluation. We don’t know when, we should get an appointment in the next week. Once he is evaluated he will qualify for the out-processing program which means driving to Atlanta anywhere from 1-3 days a week depending on how severe they think his feeding needs are. I am not even sure how long it will take to get a referral for this, the previous referral took months.
Sensory – The nurse practitioner asked a lot of questions about the Autism appointment Adam had back in March. She was shocked when I told her we were given no paperwork, no diagnosis, that the specialist had run no tests and that he had only spent one hour with him. She said a usual Autism evaluation took about 3-4 hours. I thought it was strange, but I thought maybe it was just because Adam was fine, or that I was worrying too much. She also said his sensory problems are severe. He needs to be going to OT more than once per week and that his therapist needs to be someone who is trained and certified in Sensory Integration. I am not positive, but I don’t believe his current OT is.
Speech – The nurse practitioner was very concerned about his speech. She’s concerned about the fact that he only says 1-2 words and that fact that he has said words in the past, but then “lost” them and after a few weeks and never said them again. She is also concerned that he has been in speech therapy for 6 months and there is no improvement. She says he needs to be in speech therapy more than once per week. She told us his speech level is that of a 10 month old and his level of comprehension (basically what he understands us saying) is at a 12 month level.
The end result of the appointment was that she wants him seen by a Psychologist to test him for Autism again, to see what else may be going on, and to deal with all these problems (SPD, Speech, and Sensory). She feels that there is something everyone has been missing, and the Psychologist maybe can figure out what the link to all this is. The Marcus Center has a wonderful developmental pediatric doctor there, but the waiting list is over 8 months long. They also have psychologists there, but the wait list for them is over 6 months long.
She told us she would put us on the waiting list to see one of their Psychologists, but she doesn’t think we should wait that long, she advised getting seen by someone else. She gave us a list of Psychologists that she recommended and I spent the car ride home calling them. Not a single one accepts Tricare. The Marcus Center does not have any OT’s or speech therapists so she advised continuing our care where we go now and trying to add on more days a week in speech and OT.
We walked out of the building full of questions. My mind was going 100 miles a minute with all that the nurse practitioner had told us. We briefly stopped for lunch and then got in the car to drive two hours back home. My husband and I discussed it all, but we were both overwhelmed. Once we get into the feeding program how were we going to drive to Atlanta 1-3 times a week plus take Adam to OT and Speech therapy 4 or more times a week? It’s physically impossible.
We know that Tricare has a travel program that will reimburse for travel over a certain mileage and even hotels and food, but even if they approve it, we still have would have to pay for everything out of pocket first and get reimbursed later. That’s just money that we don’t have extra of. We budget very carefully and if I may be honest, I think we do really well with our money, but this-this just seems impossible, we just don’t have it.
People have suggested not going for the feeding therapy, but that is just not an option. The therapy he is receiving for feeding right now is not enough. They have been doing everything they can, but are not able to do anymore then they already are. The Marcus Center can take that to the next level. I really believe they can help him.
All weekend thoughts have been rushing through my head. Maybe we could stay in Atlanta a couple days a week, or maybe we could move all his therapy to Atlanta. But where would we live? What about the money? I know there are options out there, options such as the Ronald McDonald house and others as well. But a lot of these are only for severe cases- children who have cancer, disease or even dying. Adam needs help, but thankfully he does not have severe health problems. I also considered trying to find someone to stay with in Atlanta several times a week. We don’t know anyone there, but I am sure we could go through our church or find friends of friends there if needed.
When we got home late afternoon on Thursday, I was feeling overwhelmed and stressed. I could feel the anxiety creep in and I started to feel nauseous. I almost threw up. I spent the rest of the night in bed, and when I was finally able to sleep I dreamed of doctors asking me a long list of questions for the evaluations of Adam. Even in my dreams I could not have peace.
Friday came and I had a long list of phone calls to make. I was in panic mode so I called Adam’s pediatrician, Family Advocacy and EFMP on the base. All day I made phone calls explaining what was going on and trying to get some answers, referrals and help. It paid off. We got a referral put in to a local Psychologist who comes highly recommended, our story was given to his pediatrician and to a case manager on base who immediately took the job of mediating between us, The Marcus center, Tricare and everyone else.
Later in the afternoon on Friday, I had a meeting with a lady on base so she could explain more to me about the EFMP (Exceptional Family Member Program). It’s a program that families need to sign up for if they have health problems or therapy that are serious enough to need special help. We need to sign up for it so if the military PCS’s us they can’t move us somewhere where Adam could not get help. They also have other benefits and ways to to help. We have an appointment to get into it next week.
All weekend my heart was so sick. The thoughts running through my head were too much. How would we do this? What if this really is Autism? What if it’s something else? What if they do everything they can and still miss something? How do I know which doctors to trust?
I was stressed, but I was also angry. Why was this happening? Why my baby? I felt like I was going through a grieving process. It felt so similar to when I had miscarried -not that I was comparing it to that, but more that the feelings were similar. I was depressed, sick to my stomach, my mind was in a fog. I didn’t want to see anyone or talk to anyone and thankfully my husband let me sleep and rest for a lot of the weekend.
I didn’t and still don’t feel strong enough to do this, but I came to the conclusion that either I am going to beat this and I am going to fight for what my son needs, and help him however I can or I can sit in bed all day every day and feel sorry for myself. Am I scared? More than you can possibly imagine, but right now I am just clinging to the fact that we are going to make it through this and that God has a plan.
I love my little boy and I would not trade him or his personality in for anything in the world. God made him exactly how He wants him to be, and if he has some problems it’s going to be ok, we will still make it through all this. I know I have some tough days ahead, but I know I have God on my side and with Him I can’t go wrong.