Update on the boys.

Well, it's been awhile since I've posted. The boys have both seen a psychologist and although they are on the Autism spectrum, she didn't want to give them the diagnosis of "Autistic", but diagnosed them as PDD (Pervasive Developmental Disorder, which is a high-functioning form of Autism. The boys have been in an Early Intervention program, where someone would come to the house about once a week to work on them. Their provider's name was Kim McQueen and she was AWESOME with them!! They really bonded with her and she helped give us so many ways to help them on our own. Then, a couple of months ago, someone else started coming. It turned out Kim was fired. I contacted her and it had something to do with a mistake she made on her mileage report. She was 80-something cents off, and they fired her for it. We had to request a new provider because "Daphne" didn't have any experience with twins, and it was obvious. We requested someone with experience with twins, so they sent Trina. She wasn't much better than Daphne and I kept having to tell her what Kim did that worked. Each visit became more and more frustrating. Then I asked her when the last time she had worked with twins. Well, it turned out that she had NEVER worked with twins, and that she was actually NEW to this field of study! So, I decided, that if I had to tell Trina how to do her job, and that since Kim gave us enough tips to work with the boys on their own....AND that since the boys really had progressed SO MUCH during Kim's care...that we could do this on our own and I dropped the boys from the program. If we can ever afford it (and if I feel it's needed), I will pay Kim to come on occasion to work with us. Until then, they are talking, signing and doing really well. Their only issue, right now, is behavioral. They throw these horrible temper tantrums (mostly Jesse), where they hurt themselves. I've talked to Kim and she has given us pointers on how to deal with those, and so far, they seem to be working.....slowly, but surely.

Jesse's First CSHCN Visit

Jesse went to see Dr. Jolma at the Children with Special Health Care Needs clinic today. First a nurse weighed, and measured him, took his hat size, and his blood pressure. Dr. Jolma then asked me a bunch of questions about my concerns, and his development. Then she sat down on the floor with Jesse and put down a big puzzle with a circle, a square and a triangle. She took off each piece and put them back in, making sure he was watching everything she was doing. Then she took out the circle, handed it to Jesse and asked him where it goes. He took the circle and then came over to me to show it to me, which, Dr. Jolma said, was a good sign. He's looking for approval. After kind of playing with the pieces (both Dr. Jolma and Jesse), he eventually put the circle in the spot where it goes. He had never done anything like that at home, so I was pleased. He couldn't figure out the other shapes, but that's ok. She brought out a few more toys to see how he can follow simple directions. He did pretty good will all except for the pictures. She would show him a few pictures and then ask him to show her where the picture of the dog was, or the house, etc. He didn't do well with that one. After she gave him a physical examination, she talked to me about raising the bar with him. She is concerned about his ability to let me know what he wants. So she suggested that if he wants something, encourage him to either say what he wants, "milk", or to sign either the word or "please". If he does, really give him a lot of praise. She said that there are certain characteristics that most children with autism has, and Jesse doesn't have those, so if he DOES have autism, it's likely a very mild case, or, very low on the spectrum. That made me smile. She suggested that we have both boys see a psychologist who can see how far they are able to progress. There are 2 psychologists in that clinic and she recommended the one that deals mostly with very young children. So, before I left, I stopped at the reception desk and made appointments for them. The soonest they had was November 4th and 5th. This visit was very encouraging, as, Jesse is the one that I worry about the most out of the two boys. Cayden's appointment (with the same doctor) is next week.

*hugs*
Becky

Are the Twins autistic?

I took the boys to thier 18-month well baby check-up on Monday. We recently moved here, to Utah, so this was a new doctor. I was anxious to meet her and see what she would be like. She was very nice, and patient, as it's hard to take 1 18-month-old to the doctor alone, let alone taking 2 by myself. She asked me all sorts of questions and I mentioned a concern that they were not speaking yet. I compared them to my almost 3-year-old Kelli, who is advanced for her age. By the time she was this age, she was not only speaking several words, but she also knew over 50 signs. The boys don't seem to be picking up any words, or signs, with the exception of an occassional "mama" and Cayden has been known to say "up". I totally expected the doctor to tell me that every child is different, and to just give them time. Instead, she asked me a few more questions and then suggested that they be evaluated for Autism. Everything after the first time that word was spoken is pretty much a blur. She gave me information for them to be evaluated medically and then information on a program for early intervention. I planted on a smile as I was trying to fight back the tears and the lump in my throat and left with the boys. I don't remember the drive home, nor do I remember getting the kids in the house. I don't remember exactly what I told Jim....language delay...evaluation....autism.....I think that's all I was able to get out. I sat down and poured over the information I was given and made the first phone call to the clinic to evaluate them medically. I spoke with a very kind doctor who asked me many questions. After his questions, he explained how his program works. I would get a phone call from a type of social worker who will make an appointment to bring the boys in for testing to see if there is a medical reason for their delay...deafness, etc. He ended with giving me his cell phone number so that I can reach him anytime I had questions, which I thought was kind of above and beyond my expectations.

Next I called the early intervention program. I spoke to a receptionist and she explained the program a bit to me. She said that I would have to do an initial phone assessment, then there will be a team to evaluate the boys. That is when they will decided if they qualify for the program. Basically if they find that the delay is bad enough to need early intervention, they qualify. So, I said a silent prayer that they would not qualify. I had to leave my name and number for a social worker to call me back. A very kind woman called me the next day to set up a short telephone assessment for Wednesday at 2:00. When she called, Jim was with me to help me answer questions. She asked questions about thier strengths, (she called this the "brag" moment, I loved it!). Then asked about our concerns. We brought up their language delay, and that we always use sign language with them, and they are not picking it up. We brought up the fact that Jesse hits himself in the head when he's really frustrated. He also bangs the back of his head on whatever is behind him, the back of the high chair and my chest when he's sitting on my lap mostly. She asked us questions about our home life, who lives here, etc. She talked about the program and set up a time for 3 people to come to our home to evaluate the boys. She explained that she will be a constant in our lives, that the nurses and teachers will change, but she will always be the person that works with our family. I was very grateful to know that because by this time I had felt a connection with her.

She said that we will know if we qualify for the program while the assessment team is here in our home, but she was fairly confident that from the answers I gave her, we will likely qualify for the program. My heart sank as I, again, tried to plant that smile on my face to hold back the tears. We set up a time for September 29th, which is good. It'll give me plenty of time to do some research and gain some strenth through prayer.

After the phone call, I went through many things, negative and positive in my mind. It is hard to realize that the children you thought were so "perfect" may have some sort of mental handicap. I went through a period of self-blame. My mind went back to my pregnancy and I wondered if I could have done anything different. Maybe I scheduled the c-section too early....if I would have been willing to wait. Did I allow them to watch too much tv? I DO have a tendency to use the tv as a babysitter these days. And then my mind wandered to the future. The plans that I had made for them. I thought about looking forward to the sad/happy day of taking them to the MTC to serve their full-time missions.....and how that probably won't happen now. I think I'm still in the greiving process because just typing this is causing a lot of tears. Will they experience things that us "normal" people take for granted? The first date? Getting a driver's license? Getting married?

I expressed some of these thoughts to my sweet, loving husband. He then gave me some counsel that I will never forget. We have adult children right now and the big question with them is...will they make it to the Celestial Kingdom? The way they are living their lives right now, it's a big concern with us. If the boys are autistic, they are guaranteed a place in the highest level. That is something that we will never have to worry about with them. Really, we are very blessed whether they have autism or not. Looking at the big picture, our eternal perspective. My husband, Jim, is a huge blessing to me.

I am still greiving, but my faith is helping me through this. I know my Savior is right here with me, holding my hand, or carrying me, right now. I can do all things through Him who strengthens me. It'll be a long month before the home assessment. But I believe I'll be ready for whatever they tell me.
Becky