Monday, August 12, 2013

From birth to 15 months

          In September of 2011 I found out I was pregnant with baby #2. The emotion and fear was overwhelming. Having to go through what I went through to have my daughter really scared me to have any more kids. My daughter was born 9 weeks early and I spent 2 months in the hospital on bed rest prior to her coming. But I can now say she is 6 years old and hasn't had any problems from being a preemie. Since I had so many complications with her as soon as my doctor found out I was pregnant again she immediately sent me to a high risk obgyn.
           So far so good in the first 14 weeks of pregnancy except the part when I found out I was having a boy. I am such a girlie girl that having a boy really scared me. But I was up for the challenge. However right about 15 weeks I started to have some small contractions. At 16 weeks I went into surgery and had my cervix sewed to keep him in. Then at 18 weeks I started to get progesterone shots to keep me from having contractions. I would go in to the doctors every week to get the shots. They seemed to be working and he was growing right on schedule. At about 32 weeks I started to have a lot of pelvic pain. So I was put on very limited activity. Well right at 35 weeks he decided that he was ready to come and he broke through my stitches. I would have to say that it was the most painful thing I have experienced. The doctor really wanted me to get to 36 weeks to insure he didn't have any complication. They went and gave me a set of steroid shots to help his lungs mature. I was now put on complete bed rest for the next week. Well it worked and we made it to 36 weeks. We had a scheduled c -section on the morning of May 2, 2012. At about 7:47am we welcomed a healthily baby boy named Brendan John Schroeder. He was 6lbs 3oz 20 inches and was just perfect. He looked just like his sister Haley. Bright blue eyes and fuzzy blonde hair. During the c-section however my bladder had seemed to move and was cut during the c section. So they had to repair my bladder which meant we had to stay at the hospital for a couple extra days so I could heal. From the moment Brendan arrived he decided that sleep was over rated. He would only fall asleep if I was holding him. So that's what I did while we were in the hospital. The joy of leaving the hospital and coming home to now a family of 4 was a moment that I can't describe. My two kids were perfect. I had no idea what to expect with having two kids.

                   Within the first couple days of Brendan being at home he started to cry all the time. He seemed to have colic. He didn't want to sleep for very long and he would just cry and cry and cry. He hated to be swaddled or have any kind of blanket on him. He was the happiest when someone was holding him. Then we started to figure out that he was having some tummy problems. He would go up to two weeks without pooping. You could tell his stomach hurt because he would arch his back and just scream. His pediatrician had us try pear juice and prune juice. Well neither of those were working. She then had us try putting karo syrup in every bottle. Well that did seem to help him for awhile. At about 3.5 months old the karo syrup stopped working. He now would go from being constipated for a week to having horrible diarrhea. Then out of now where he started to get a rash break out all over him. It was awful, I felt so bad for him. You could just tell he was miserable. This would explain all the non stop crying he did. The next thing the pediatrician did was change his
formula. Well for the next 1.5 months we proceeded to try every formula there was to try. Nothing
was helping him. His pediatrician then sent us to Phoenix's Children's hospital to see a gastroenterologist. He decided to put Brendan on a prescription formula called Neocate. It was free of gluten, soy, dairy, eggs, and peanuts. Well after just a couple of days on this formula he was feeling much better. The skin rash went away and his bowels became normal.

                           The first 5 months of his life I was so consumed with his stomach issues that I wasn't able to just enjoy him. I was also completely sleep deprived. He would take extremely short naps and would wake up every 2 hours just crying through the night. Once his tummy got better at 5 months he was a much happier baby. This is when I started to notice when things just didn't seem right with him. He had extremely strange characteristics and behaviors. He would sit in his high chair and twirl his hands and feet non stop. He would then get excited when he was watching Mickey Mouse and make these strange grunting noises. Then it got to the point that he would only smile or get excited when he was watching Mickey Mouse. Watching a baby at 5 months getting so engaged with Mickey Mouse on tv I thought was quit strange. He wouldn't make eye contact with anyone. A new person could walk in the room and he would never even look up or even know who was coming in or out. I started to get a gut feeling something was off. I then began to video tape him and write down all the things I thought were weird that he would do. At this time I didn't say anything to anybody about my weird feelings. Not even my husband. We then began to introduce oatmeal cereal but he then had a reaction with skin rash and diarrhea. So we tried rice cereal and had the same reaction. His reactions to everything he was eating was really starting to scare me. I would read other mom's stories about how difficult life was with a child having so many food allergies. The kids experienced a lot of bullying and the whole family would be affected by it. During the next couple months I would keep daily food logs of everything that went into his mouth. This was the only way we could figure out what he was having reactions too. But somehow he was gaining weight. He has the Schroeder jeans for sure. The Schroeder babies were all big babies. At 5 months he weighed 20lbs.
         
                  
                           From 6-9.5 months Brendan wasn't hitting any of the milestones he should of been. He didn't roll over until 7 months. He didn't sit up on his own until about 9 months and he wasn't holding his own bottle yet. He wasn't crawling or even babbling. His hand and feet twirling started to get worse and his obsession for Mickey Mouse also started to get worse. He then started to show all strange signs. He would look up to the kitchen lights if they were off and refuse for you to feed him until you would turn them on. He would scream every time we would got into the car, which I couldn't ever figure out because at home the only way he would sleep was if he was swinging in the swing. So he clearly liked the motion. He then would completely freak out if you touched his hands. If you tried to hold his hands he would immediately release them. Any different texture of taste you would put in his mouth would make him freak out and throw up. Now I know babies make faces and sometimes gag on new foods but he would take it to a whole nether level. When he would attempt to play with his toys he would just turn them over and around and look for any hole or screw he could play with. Then the biggest thing that he wouldn't do is respond to his name. I would sit right next to him and call his name and he wouldn't even flinch or ever even take his eyes off what he was doing. He didn't have any stranger fear. He would go with anybody because he wouldn't even look at them to know if he knew them or not. After I had been documenting all of these characteristics I started to do some research. Everything I would look up or search and it would give me the same answer each time. I came across a self assessment test that I took which had so many questions just like all of my concerns. The score of my test would explain it all and give me an answer that no parent wants think about. At this time I figured it was time to tell my husband my suspicions. As I explain to my husband that I think Brendan has some really strange characteristics he began to look somewhat puzzled. My husband works so much so he isn't around most of the time so I wouldn't have expected him to notice some of the things I did. I told him just watch him in the next couple days and see if you think I am right or just crazy. He then paid close attention to him and couldn't believe that he didn't pick up any of the signs prior to me tell him. We sat down together after the kids had went to bed and discussed what we think we should do. I then started to show him all of the research that I had been doing. I then began to cry uncontrollable, I said to him I think Brendan might have Autism Spectrum Disorder. He sat their in silence and said I think you might be right but we should take him the pediatrician before we jump to any conclusions.
                                          Brendan not responding to his name at 9 months
                                          Brendan twirling his hands and feet 8.5 months


                      Right at 10 months we had an appointment with his doctor. I was terrified walking into this appointment. I had said to Brian that if she thinks I am just a crazy mom that we will go see a second opinion. But at the same time I was kind of hoping that she would call me crazy and tell me that he isn't autistic. I started by explaining to her all of my concerns with him not meeting milestones and then all of his strange characteristics. I then began to show her lots of video from 5 months of him. I read off my list of concerns as well. She then began to observe him and do her own assessment. She looked at me and said I think he is definitely showing all signs of autism. Has I started to cry she said to me, I have to tell you that you being so in tuned with your son will hopefully give him the oddest of being high functioning when he is older. she said I wish more moms would face their kids faults head on like you because so many kids would have had a diagnoses early on. She then would refer us to a developmental special doctor at the Melmed Center. They were a center that specialized in autism. I had called to make is appointment and they old me it was going to be about 3.5 months before we could get in. But because he was only 10 months old he would get moved to the top of the cancellation list. We are in a curial age for development so they get the younger kids in as fast as they can. Sure enough about 2 weeks later I got a call at 12 in the afternoon letting me know they had a cancellation at 2pm later that day. I said we will be there. I called my husband at work and told him he needed to meet me their. The anxiety and nerves kicked into full swing.
               As we arrived at the Melmed Center I looked around at the kids in the waiting room. They all looked normal to me. Then I noticed that we were the ones that were getting the stares. I would imagine it was because Brendan was so little and most of these kids were about 3-7 years old. It was our turn to go back with the doctor. I then began to explain everything just the way I did with his pediatrician. I also had to explain all of the stomach GI issues he was having and going through. She then began to ask Brian and I a lot of questions. After that she observed Brendan. Then she started to confirm our fears. The next couple words to come out of her mouth would then change our life forever. She said there isn't a doubt that he is on the autism spectrum. He definitely fits everything that an autistic child is. At that time I felt my body just go weak. She also then began to tell me that so many parents are in denial about the strange characteristics that their children have and that is why most kids don't get diagnosed until 3-6 years of age. She said it takes a teacher or someone else to point out to the parent that there child just isn't normal. Even though most parents are aware of it they are scared to find out that something might be different with their kid. So she said that Brian and I are doing the best thing for him and getting the help he needs early. Early intervention is the best thing a child could get. Now she would explain to us the next steps. The diagnoses becomes a little tricky. His doctor wasn't ready to give him the label of autism yet but we would proceed with the therapy as if he did get the label. The doctor said I want you to get therapy for the next 3 months and if we don't see any progress then he would get his official diagnoses. He would need to get 8-10 hours a week of speech therapy, occupational therapy, physical therapy and feeding therapy. At that time thinking of that much therapy for a 10 month old was extremely overwhelming. I wasn't sure how we were going to do all of this. As we were finishing the appointment with his doctor I immediately shut down. Brian and I went into the grieving stage. We were grieving the fact that our son may never go to a normal school, play on a sports team or ever get married and experience having his own kids. All anybody wants is to have kids that are excepted and liked. After we started to processes all of this it was time to let our family know. Our family took news pretty hard. They also all went through a grieving period. What surprised me the most from our family is they said, "well he looks normal." It's surprising how little most people know about autism. We then began to educate our family on autism, as well as educating ourselves on treatment plans.     
                                 Now I would go into high speed motion to make sure I get my son the help he needs. Well there was only one problem, we found out that our insurance doesn't cover autism. This wasn't going to stop us. Our family came together and everyone helped get his therapy started.  He first began to get all of his evaluations done by each separate therapist. It was scary looking at the evaluations because he truly was scoring at a 3 to 6 month level child. All of the feed back I was getting from the therapist was that we were doing the right thing by getting early intervention.  
                                  So he is now 11.5 months and is in fully intense therapy 8 hours a week. I attend all therapy classes with him. I am in there to learn what each therapist is doing so I can continue to work on things at home. He is not enjoying therapy at all. It breaks my heart to watch and listen to him scream. He is such a free spirited little boy that when you make him do something he just shuts it down. He has now figured out how to crawl at 11.5 months so he is doing lots of exploring. The physical therapy is in full motion for him to get to the next step which is walking. Speech and feeding therapy are his least favorite. His therapist is really working hard on him learning how to feed himself. Normal babies at this age can self feed. He still can't even hold his own bottle and he seems to get super frustrated. His speech therapist has us working really hard on his tongue because he doesn't move his tongue from side to side. We have purchase lots of vibrating toys that he can chew on plus soft toothbrushes he can chew on. She is also helping us with getting him to eat different textures in his mouth. Which this all plays into his sensory issues. This is where occupational therapy comes in. His OT therapist really gets him to try and focus on a toy and tries to get him to make eye contact. Getting him to sit longer than 5 seconds seems like an impossible task. After the first couple weeks of therapy I was mentally exhausted. Each therapist is flooding me with so much information at each session that I became so overwhelmed. I was also trying to get a hang of balancing life with work, and then Haley's schedule. Brendan and I now live in our car. We are constantly on the go. It makes me feel so bad because he is in so much therapy that he isn't getting to be just a baby. 
                                   We have now reached his 1st birthday and he has made some huge progress, so I think. He has learned to walk, he has learned to hold his own bottle. Which the moment he held his own bottle to feed himself I completely broke down into tears. I was such a proud mom. You really don't realize how important the small things are to his progress. He seemed to be getting better at making eye contact at least with me. Unfortunately I have learned that when children with autism take 2 steps forward they usually take 10 steps back on things they once had accomplished before. I am just learning that this is going to be an emotional roller coaster of a ride. I really want to get excited about some of the things he has accomplished but it is so hard to because he may loose it after a short time. Now that he is walking he has began to walk on tippy toes. Apparently walking on his tippy toes is from his sensory issues. Its extremely common with autistic kids.  He has also started taking a gymboree class once a week. His doctor has suggested that he is around kids his own age. He loves just running around and climbing on everything. He is all boy when it comes to climbing. But it is so hard to watch him at gymboree because he doesn't interact with any kids. If you just watched him during the class he acts like everybody else in the room is invisible. He will walk into other kids and push them out of the way again like they are invisible. I know the other parents are looking at me and thinking my child is way to wild and I have no control over him. But I have come to learn really quick that what other people think of child can not bother me. 
   
                              
    We have now been in therapy for 1.5 months and kinda just hit a wall. He was doing so good the first  month and now we are really back to square one with his eye contact, sensory progress and now we have added other issues to the list. However in the physical part he has progressed like crazy. He is running, climbing jumping on everything.  How is it possible that just a month and a half a ago he had just starting crawling and now he is a wild man. We have also made some progress with his eating and food allergies. He hasn't had any reactions because we have kept him on a gluten free, dairy free, soy free, egg free, peanut free, tomato free diet. His food issue alone has really put so much stress on our family. Now at 13 months it was time to go back to his doctor at the melmed center for his 3 month follow up. It was Brian's birthday so I told him he didn't need to come with me to the appointment. The day of his appointment was not a good day. Brendan was in an extremely bad mood and wouldn't listen or cooperate at all. I didn't know if this was a good thing for the doctor to see or a bad thing. Well getting an appointment with this doctor is extremely hard and a long wait so off we went to see the doctor. I guess I really didn't know what to expect from this appointment other than maybe she would say just continue doing what we were doing with the therapy. Well I was wrong! She began by observing him for a bit and then she started to ask Haley a bunch of questions. She ask her questions like, does your brother play with you? does your brother bring a toy to you to play with? does your brother point to anything he might want or to show you? does your brother hug or give you kisses? does your brother wave hi or bye to you? Does he laugh or smile or clap his hands at anything that might get him excited? After each question Haley would answered no. It broke my heart. The doctor would now explain to me that he would be getting his label and official diagnoses of autism. I already knew he was autistic but getting that official label just crushed me. As I sit in the doctors office I did everything I could to not cry. I didn't want Haley to see me get upset. Now that he has his official diagnoses she would like him to start a program called ABA therapy. I had no idea what aba was. She then told me that he would need 25 hours of week of ABA therapy plus she wants him to continue the 8-10 hours we are currently doing. She said that aba therapy is what he will need if he has any chance of being a high function child. Then she said that I would need to get state medicare/altec funding in order to pay for the aba therapy. Well I just said to her that I had gotten a denial letter from the state saying he wasn't medically qualify. The letter stated that he needed to be in a nursing home state of medical need for him to get state funding. Which is just crazy that the state would like my son to basically be a vegetable before we can get help. Then she said well its not going to be easy but you will need to fight to get him in. I told her that my insurance doesn't cover autism so we are already paying out of pocket for all of his current therapy which is soooo expensive. She says well aba therapy is $50,000-$60,000 a year. I explained well if we don't get state help then there is no way we can afford that on top of the $30,000-$40,000 we will pay a year for the private therapy we are currently doing. This is when I couldn't hold back the tears. It is just not fare that these children with autism are treated any different in the states eyes then the kids with other mental problems. The appointment was over and we got in the car and I just broke down into tears.  I couldn't call Brian and tell him what had happened because this would completely ruin his birthday. We had plans to go out to dinner for his birthday so I made the decision to tell him that night after the kids went to bed. When we got home Haley started to ask a lot of questions about what was wrong with her brother. She was really listening to the doctor but just couldn't understand what she was talking about. So not being prepared at all to tell her, I just explained that god made your brothers brain different then mommy's, daddy's and hers. Brendan goes to therapy to help his brain and hopefully someday he can have a brain just like yours. I said that it makes mommy cry because I wish he was born with a normal brain. This was so hard to explain to her. As I continued to cry Haley was there giving me a huge hug telling it was going to be ok. I know someday when she starts to really understand autism she will be Brendan's biggest supporter.
                                  After the appointment at Melmed center I began to reapply for help through the state of Arizona. Now that we have the diagnoses I hope this might make it a little easier. So fingers crossed I started the process which last time it took about 3 months for the whole process. We also continued on with our daily therapy. Brendan had some great days at therapy and then had some days that were just not good. Going to therapy during the summer was hard because poor Haley had to sit with me everyday during his therapy. She was so good about it all and really never complained. 
                                Brendan has been on prescription formula(which insurance doesn't cover) since he was 5 months old. Well the brand is Neocate and they have a junior version of the formula for toddlers 12months and older. I had tried to switch Brendan to it when he was 12 months but he refused to drink it. They have 4 different flavors tropical, chocolate, vanilla and then unflavored. I had tried all 4 kinds but he just didn't like any of them. Now that he is 14.5 months he was doing much better at eating and trying new flavors, so I thought I would try to introduce it again. I first tried the chocolate but still he wasn't a fan of it. So then I tried the tropical and what do you know he loved it. So he had about 8 ounces of the tropical the first day. Well the next day he broke out into a rash all over and had really diarrhea. I was so confused why this was happening because that formula was made by the same company he was currently using. I called the company to find out if and what ingredients were different. The gentleman explained to me that there was only one ingredient in the tropical kind that was different and it was artificial flavoring. He said the unflavored kind doesn't have artificial flavoring. So we can now add artificial flavoring to his already crazy list of foods. He was scheduled to his GI doctor that same week so I explained to him his new reaction to artificial flavoring. This one really surprised him. I also let his doctor know that he really doesn't eat that much. His GI doctor told me that we need to extra thankful for his genes because if this was any normal child with his food allergies they would either have been hospitalized numerous times and would also have a feeding tube. Brendan is now 15 months and has only gained 5lbs in 10 months. So even though he still has alot of meat on his bones he has gotten to the point that he falling below in percent of monthly weight gain. His doctor explained to me that we need to get him to drink the junior formula because it has more calories. So we are slowly adding it to his bottles that have the infant formula in it. Then as much as he wants to get him off the bottle right now this is his only true source of nutrition. 
                                 Now that I have caught everyone up to what we are going through with Brendan this blog is going to be where we can share how he progressing. My goal is write once a week and give a current statues on what we are doing. In this experience so far I not found any other stories about a child being diagnosed with autism at such an early age. So I hope that I can reach out to other families and possible help them by getting their child diagnosed early. I am an open book and will share and answer anything anyone would like to know. Brian and I want to thank everyone so far who has been here to support us through this life changing experience. 



              

10 comments:

Alea said...

Wonderfully said. Thank you for sharing all of this! Brendan and Haley are so fortunate to have such a loving and awesome mommy! <3

Nancy Spina said...

You are amazing Gina. God has given you a huge capacity to love and you are bursting with love for his little guy. We are so blest to be his Godparents. To Brendan, "You are unrepeatable, irreplaceable, and unique and the day you were born the world changed for the better because you are in it. There never was or ever will be anyone like." We love you all and will be always be here to celebrate the joy he is!

Marnee Marriott said...

Gina, thank you for sharing your story. You are an amazing mom!

Debi said...

Gina, What a generous gift it is to share your story. The honesty and detailed documentaion is sure to help others and save families from waisted time in determining this condition. I'm so impressed with your courage and strength to face this tough situation so fearlessly. It really is candor like this that saves lives. Herioc girl! Your determination and perseverance is inspiring. Brendan may have challenges ahead but with the amazing love, support and strength from his family and with you at the helm; I believe he's got the best chance in the world to thrive. You are one impressive Mommy! Hugs to you all. xoxo

Aimee Fuller said...

You are an amazing mommy!! I have a 6 year old with autism, and it's been challenging, but nothing close to what you've dealt with! I will follow your journey. Have you heard of TACA? Talk about curing autism now. You can get a free mentor (another parent

Aimee Fuller said...

Maybe another paret has had a child as young as your son diagnosed.

Gina said...

Aimee,
I think having a child at any age with autism is all equally challenging. So commend you as well! I actually just read the TACA tonight. I received it from a friend that I recently met who has a 5 year old autistic son. I feel like I am doing 90% of it already so hopefully I can continue to follow it. Do you follow it exactly?

Unknown said...

Gina, your story made me cry so much. You are the best mother.

jas said...

thanks

Anonymous said...

He be a beautiful baby long time