Disney World 2013: Day 1

I was going to wait until I got home to write on how the trip went but I felt take 30-40 minutes a day to account for the day would be great to let others know how our trip is going, the struggles we have, and it will be a nice thing to look back over :)

Overall I count today as a success. Sure things could have went better but they also could have went a lot worse! We had planned a big breakfast for the kids with Mickey shaped pancakes, sausage, bacon, eggs, and orange juice. Lonnie got up super early this morning and did it. It was alright. The food was great but between the kids' excitement and trying to make sure the car was completely loaded and nothing was left behind, it really didn't get eaten that much. Noah had a meltdown literally 2 minutes after being in the car then 5 minutes later he wanted to know if we were at Disney yet, lol. I won't even lie or exaggerate, the car ride was complete HELL. Noah was having meltdowns frequently and often, he didn't want to be touched which was hard considering our entire family was squished in a small car, and literally every 3 minutes he was asking if we were at Disney World. Lonnie Jr decided now would be a good time to start teasing his brother in which Noah punched him. Then Danielle was crying about having to pee every 5 minutes. Thankfully it was only 3.5 hours so it was short lived (would have been 2.5 hours but somehow we got lost once we were inside Disney World). Noah's hardest time today was adjusting to the idea of staying in a hotel and that we weren't living there. The constant meltdown of the day is that we were inside Disney World but we weren't at the parks. He absolutely couldn't get this concept. He kept wanting to ride rides when there was in fact no rides. Once we got inside the hotel and fed the kids lunch, things were much much better. We forced the boys to take a nap and that gave us time to unpack the luggage, groceries, and just relax from the stressful car ride.

Now I had no plans to promote the resort but I would like to say our experience with Disney resorts has been absolutely wonderful. Their customer service before we got there was superb, it got even better once we were there. In checking in, I was stopped by at least 3-4 people asking if they could help. Even though the place was swarmed with 30+ people, I waited NO time to get checked in. It was incredible. When I originally reserved the hotel, I had explained that we had an autistic son and we need a quiet room away from busy/noisy areas, ground floor, water view if available, and an early check in. They accommodated all requests. We had thought about getting the water view pirate-themed rooms when reserving but it was an extra $30 per night. They upgraded us for no cost! Then the room was insanely awesome. Now we both saw photos so you wouldn't think we were as pleased as we were but it was just AWESOME! The beds are pirate ships, the details are insane, our fridge is inside a barrel, our nightstand is a barrel, the floor is planks... I wanted to share photos just because I am that pleased with it.

After the kids woke up, we wanted to go do something but it was 52 degrees with 20 mph winds so even with heated pools and a hot tub, there's just no way we were going to do the pool. Everything else they had to do was outside oriented so we decided that going to the gift shops, grabbing a bite to eat, and playing in the arcade was a great way to spend our first evening! This caused even more problems with Noah because he saw all the Disney-like souvenirs and so forth but no rides so there was a few meltdowns during the course of the evening. The worst was over milk, we regretted leaving his autism cape at home because the looks we were getting but it was okay. I just told myself that I was here to make a vacation for my family not to justify my parenting to complete strangers. He really didn't eat hardly anything. He ate some of our burger, some fries, and the plate of pickles we got for him! However, with Noah I have learned that whenever we have a hard time with him, he makes up for it in someway. We went to probably about 3 gift shops with little to no issues with him! He looked at toys, found things he loved, and we hardly had to hold his hand. He was near breakable things and still, no issue really. We actually had to get onto our older neurotypical children more than we did him. It was so nice. The arcade was fun and overall no complaints. He really wasn't interested in any games (except taking photos with me at the booth! LOL) but he pretended he could play them or he just followed my mom around. He was a joy and he smiled and laughed. That's all I want! He came home and crashed without his nighttime medicine so after my bath I had to wake him up to give him his medicine. Tomorrow is Hollywood Studios. We are hoping the weather has improved where we can maybe come back for an hour or so to use the pool but we don't have any expectations except for our kids especially Noah to have the time of his life :)

Family Vacations

Being a mother to a disabled child means that sometimes I have to make sacrifices. I knew this when Noah was first diagnosed with Autism and then later Bipolar Disorder. What I did not take into account though is that I wouldn't be the only one making them. I knew Noah would be in Special Education classes the rest of his life in a self-contained classroom; I knew that it's a good possibility that he will have to live with me well past 18 years of age if not the rest of his life; I knew his life would consist of many inpatient psychiatric hospitalizations, and I also knew that all the dreams and hopes I had for him as a toddler were no longer. I dealt with this reality. I never was prepared for the sacrifices my other children would have to make though. They both absolutely love their little brother; there is no doubt about that. I remember when Lonnie Jr was barely 5 and Danielle was 6, we sat them down and tried to explain Noah's disabilities. It was hard for them to understand at such a young age but they all agreed on one thing: Noah is not like other children. We went with that their brother was different and special. They have protected their little brother so many times and sacrificed more than they even realize. Danielle now understands he's autistic and a little bit of what that means but labels don't matter to them, but their fragile brother does. They have taken so much from Noah and never once do they hold it against him. They can't invite friends over out of fear of Noah hurting one of them but that's okay to them, they just lie and say they don't want their friends to stay the night anyway. When Noah was hospitalized for 8 days this past fall, they both cried and constantly asked for him. My daughter slept with his favorite car until he got back and she could give it back to him; my other son drew him probably 50 pictures. A lot of instances where other families can go out, we can't. When we plan a big outing "day", it's always cut short after the first task because Noah gets too stimulated. We once tried to plan a family day to a local water park, the cold water was too much for Noah and we had to go home early.

One might ask: Why in the world would you take all 3 of them to Disney for 5 days then?! I have many answers and many reasons. To get to what inspired this trip: my older kids deserve it! I have great children. Sometimes they're sassy or cranky but most times they are precious, enduring, loving, sweet, and giving. They are absolutely everything I would want in a child. They need to be kids, they need to remember what it's like to not be 7 and 8 going on 30. And as much as those children need it so do my husband and I. This year has been difficult and trying. Our 9th anniversary was in February. Instead of going to Universal Studios for an extended weekend, we wanted to do this instead. Now we did think about leaving Noah at home, I could get my mom to watch him easily. That's what we always have done anyway. But I felt if there was any place that we could take Noah and maybe possibly feel like a family it is Disney World. Then there was the point that Noah is autistic, he is bipolar - all of these things are true but he's still a child. He is a child who deserves a vacation, 5 days where he can feel normal and be like every other kid out in this world. It's where dreams come true after all, isn't it?

My entire point of this blog entry wasn't to justify to others our vacation decision. I just know that when I was doing the extensive research whether to take Noah with us or not, there were so many blogs and articles that helped me immensely. I wanted to help out, give back, and maybe help another parent who might be considering taking their special needs child to the land of dreams! I plan to keep an updated daily blog (it might not all be posted until I get back though) so its a better insight. Below are some pictures of things we did to prepare for this trip!

The first thing we are doing to make our trip a little bit easier and accessible to Noah is getting a single or double stroller (we have yet to 100% decide on which). He has low muscle tone (hypotonia) to start with so we knew we'd either need a wheelchair or stroller. We were going to opt for the wheelchair because it's cheaper ($40 for all 4 days at the park) but he does have a tendency to just get up and dart for no reason. Disney World would give him plenty of reasons so we felt that was a bad idea so a stroller where we could strap him in was the more logical (and safer) option. Due to him being the size of a 7 year old, it made buying a stroller just out of our price range. We got a letter from his neurologist (although from what I understand it isn't required) so we can use his stroller as a wheelchair wherever wheelchairs are allowed. We think this will help his hypotonia but also help the trip and long lines run smoother. We are of course going to try to get the Guest Assistance Card. I keep getting conflicting information if you need a letter from your doctor or not. I had an issue with getting that so I am just bringing a letter from his psychiatrist that lists his diagnoses and hope that's enough IF they need it. I will keep you updated if it was needed or not. And for those who aren't aware what the GAC is, it allows you alternate waiting areas (shaded, away from crowds, etc.) or to enter through the Fast Pass or Handicapped entrance. Disney doesn't advertise that it helps cut your wait down but from what everyone says it does. It also gives you seating at the front of the shows if available. Overall, it is used to alert the cast members that a person has a disability that isn't visible. We are also bringing my mother with us to help with Noah if he is having a meltdown, isn't wanting to ride a ride the rest of the family is, or needs to be taken back to the hotel. We figured a ratio of one adult to every child was a good one!

We are staying on Disney property. There are so many perks to it that it was worth the extra $15 (yes, I said $15) than when we would stay off property thanks to a Florida resident special Disney is currently running. Not to mention that you get free parking at the parks as a perk so let's deduct that to THREE dollars. Our hotel room is decked out in a pirate theme with 6 heated pools where the main pool has 3 water slides for the kids and a shipwreck water park for the children under 4 ft (Noah is just under 4 ft without shoes!). They also provide free transportation every 20-30 to/from the resort if needed so if my mother does need to take Noah back, she can. It's of course a close commute for us even by car so we can take a midday break if needed. They also offer "extra magic hours" that the park is solely open to resort guests only. So on the days the park opens early we can take the kids and enjoy the busier rides without the extra wait and on the days the park is open late Lonnie and I can go back to the park after the kids are in bed to enjoy some "us" time. For us, that $3 extra a night is worth it!

Now one of our big concerns was what happens when we are in public: the stares, comments, and questions. A 2 hour trip to the grocery store is fine to endure this but 5 days back to back I knew would get annoying and we didn't want Noah to be treated unfairly because people simply didn't know. Now the questions I don't mind so much (if they're in good taste) but the unnecessary, ignorant comments and stares would definitely put a damper on our family vacation. We wanted something he could wear saying something about autism but in a cute way. My close, awesome friend from Oklahoma made him a cape that says "I Have Autism ... What Is Your Superpower?" It is adorable and I will forever be grateful to her for that thought of kindness and generosity. She also made a flag we could put on the stroller. We were also very concerned about Noah getting lost. Actually, that was a huge fear of mine. We decided to make a name tag he could wear that had information about him being autistic, what it meant, and all of our contact numbers in the event he got lost or ran off. I even added a little Mickey Mouse on it to "Disney" it up. (My husband also drew a Mickey Mouse head with puzzle pieces on the cape ;))

When packing for the trip we had to address all of his needs: his inability to wait, sensory problems, his diet and selective taste in food. I knew we needed something to occupy him when we did have to wait for a long time (the GAC doesn't help you with meeting the characters which is one of the things he's most excited about). I decided the best plan was to bring his Leap Pad equipped with headphones and his Scooby Doo game. We were bringing this anyway for the car ride but it will be recycled in the park as well. We also knew some of the shows, parades, and attractions would be too noisy for him but we still wanted him to be able to enjoy them so we invested in some soft ear plugs for him. Even my older kids want to use them to on the rides that are too loud! I had to get him sunglasses as well since the sun is too bright. We also packed his blankie he uses to chew on and then one to cover up with in case he wants to take a nap (which we are hoping on!). We are making sure to bring his favorite snacks if it doesn't have to be refrigerated and some which do since there's a fridge in the room. I figure at least that way he will be able to eat when we go back if he doesn't eat very much at the park!

Well, that is it so far. I am excited and nervous. I really hope the kids have lots of fun and this is a positive experience.

Judgement

Judgement and criticism is something that all parents of special needs children have to face at one time or another. I have been dealing with it from the time my oldest child who is biracial was born and it certainly didn't end when Noah arrived. Whether it was judgement in whispers speculating exactly why he wasn't progressing in development, unwanted advice on how I could discipline him so much better to "beat" those tantrums out of him, or that I possibly couldn't be putting my son on medication to be helping him, I just must not be able to handle my child. It still shocks me though when a complete stranger makes a judgement about my life and caring for my son when he or she has no possible idea what I go through on a daily basis.

Yesterday as I was handing Noah's bedtime medicine to Lonnie (he will usually only take it from him), I realized he only had one pill of Zyprexa left. He takes two pills so I knew I'd have to pick up the prescription from the pharmacy today for tonight's dosage. I didn't think this would be a huge deal as the prescription was called in the last week of August from his doctor's office since they increased his dosage from 5 mg to 10 mg and no problems were mentioned. In the commotion of rearranging our house to make the play room and office, the website, and dealing with one of Noah's "up" days, I forgot! I remembered an hour before our usual pharmacy closed so I called them, they said it wasn't a problem, and they could even transfer to a closer pharmacy so I wouldn't have to drive as far. This sounded wonderful and it'd be ready 10 minutes before they closed. Well, what they didn't check was the hours of operation for the "closer" pharmacy. They were already closed for the day so I had to drive 10 miles away to the 24 hour pharmacy. I was upset by this but Noah had only had half of his Zyprexa dosage and he needed that other pill. I get there only to be informed that Medicaid has denied his new dosage due to his young age. I am a little frustrated but after almost a year dealing with prescriptions and Medicaid, I'm not surprised at all by this news. She explains that Medicaid will need additional documentation from the doctor's office before they can approve it. I say, "That's okay. I completely understand and his psychiatrist's office will have no problem sending that over. After all, Medicaid isn't the one that has to live with him." The pharmacy technician's response? "Yeah, that's how a lot of parents feel when they can't handle their children." Now if I heard any other mother tell me this scenario I'd probably say a million things on what I would've said, however, you never know what you will say when someone is blatantly calling you a horrible parent. I politely smiled, looked her dead in the eye, and asked her if she could please ask the pharmacist if I could have an emergency supply to last me until Monday. After I drove away, I had thought of many things I wanted to say to her. There's some ugly things I wanted to say for questioning my parenting and my choices for my son's mental health but mainly I wanted to scream, "Are you aware that his Zyprexa is the only thing that stands between him and a psychiatric hospital?!" It isn't easy being a parent of any child that has a disability but being a parent to a bipolar and autistic 5 year old is sometimes beyond challenging to say the least. Sometimes we have to make decisions that aren't easy, they're not ones we want to make, but no one said being a parent was a bed of roses.

Judgement comes in all forms and while we all have opinions, I just feel some opinions should be kept to themselves. I expect the criticism coming from random people who have no education in mental illness or autism but more times than not, the most criticism and judgement come from medical professionals or those educated as such. I recall a time I had to take Noah into the ER to have his Depakote levels tested in which I had to defend my son's psychiatrist's decision to have him on a mood stabilizer. To me, that is absolutely absurd, unprofessional, and completely uncalled for. No parent should have to defend a treatment plan agreed upon by both parents, a psychiatrist, a therapist, and a case worker to another medical professional just because they're not knowledgeable enough in that specialty to know that it is in fact in the child's best interest.

This is a perfect example on what this website is all about: awareness and education! We can no longer be quiet about these issues. People need to realize that pediatric mental illness is real and it does happen. Don't judge. Educate yourself.

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Outpatient Services

I have mixed feelings tonight. First of all, I am super excited about the progress this blog has taken. I purchased the domain and hosting account tonight. A friend's husband has been a godsend by taking on helping me so I couldn't have done it without him. I finally feel like this is really happening and it's a wonderful feeling. But then I guess that's the part which is making the other part of me sad. I want to be able to be at home, help others that are going through similar situations, raise awareness, and be there for Noah like I need to be! I love my current job, I really do. I have a great manager and a team full of wonderful coworkers who I've grown very close to; however, all day every day I just want to be home. I don't want to cringe every time I have an appointment for Noah that doesn't coincide with my work schedule. I also feel it's unfair to my employer that I can't give my full heart to the job when my entire heart is stuck at home! I am going to press through and try to get everything completely up and running where I can be at home by Christmas time. What a Christmas gift to my family that would be!

We have been trying to get Noah into outpatient or in-home therapy since November 2011. We finally got a call from our targeted case worker advising us of an appointment on Friday! So, that is such a great step in the right direction for us. We are also having an in-home behaviorist which will come out to the house on a weekly basis to help with Noah. With these services that we've fought for so long for, it is a great feeling to know they are finally coming. We are also doing it because his insurance wants to see as many outpatient services as possible before doing the residential treatment center. So, we are doing it to know that if we do need to exercise that resource in the future, our chances having it improved are much greater!

This is a shorter entry but of course, I need to get back to the web design of everything! We will be switching blogging origins soon!

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The Introduction: A Glimpse Into Our World

Most parents of special needs children say that they knew something was different or "off" from the moment he or she was born; however, we didn't. We had been married for going on 4 years and had 2 neurotypical children: our daughter Danielle who had just turned 3 and our son Lonnie Jr was turning 2 in just a few short months. Noah was by all means a surprise but a very welcomed child. Just like with his siblings, my pregnancy came and went with no incident. He came into this world like my other two children. I remember holding him with tears of joy; he was absolutely precious. We just had no idea what was in store for us in the following years. 

Nothing prepares you for it. It's commonly said that there is no parenting handbook. Well, I definitely know there is no handbook or even a chapter on preparation of a disabled child. We definitely weren't prepared; it caught us by absolute surprise. Noah was a good infant. He was sweet, smiled, and he laughed at everything. Compared to other children, he did cry more and his choice of foods was very picky but we weren't really concerned as all children are different. We noticed that he couldn't sit up or roll over by 6 months old. He didn't start crawling until right before his 1st birthday. One might think that this would’ve been a red flag but it wasn't. When both parents work full-time plus 2 toddlers it's very easy to miss. It wasn't until he was approaching 19 months that there was concern. We were referred to Early Steps. I don't regret a lot of my decisions throughout Noah's life but I regret this one thoroughly. When they asked me questions they couldn't possibly know about him, I lied. I love my son dearly but in my mind I thought his lack of development was somehow my fault. I had worked too much, too hard, and I hadn't noticed the big signs any other parent would have. He was 20 months old and he wasn't walking, pulling himself on furniture, talking at all, or socializing with other peers on an appropriate age level. He had said a few words around 15 months: mama, dada, bye but somehow he just stopped saying them. I wasn't aware of signs of autism. Again, I was just busy. He began pulling himself on furniture a few months later and then around his 2nd birthday he was full-fledged walking. We were relieved and chalked it up to an extremely late walker and talker. His speech actually didn't even begin until he was 3 and then it was gibberish. Even though his speech wasn't developed until then, shortly after his 2nd birthday we noticed that the child we knew before wasn't the child we had now. It was literally like a switch went off in him.

Throughout our journey with Noah, many opinionated individuals have labeled him with hyperactivity. Now let me clarify something: our daughter has ADHD and our other son has ADD. We are very aware of how hyperactivity and attention deficit disorders present. He’d run and scream through the house for no reason all day long. He’d purposely bang his head on walls or bite himself. He was very silly/goofy beyond any 2 year old we had encountered. We began to adjust our lives to having this hyperactive child. Sound, touch, and large crowds seemed to make things worse for him. He couldn't talk or express himself so he’d either try to hurt himself, others, or just scream for no apparent reason. From the outside it definitely looked like a misbehaving child but as it continued and we tried every discipline method in the book, it became clear that what was happening was completely beyond Noah's control. Just as we thought age 2 was such a rough year for him and us, year 3 was our breaking point.

By this time, we were accustomed to his manic-like symptoms. However, age 3 brought new issues we just were not prepared for at all. He was trying to talk but they were 30 words or less and we couldn't understand half of them. He would be sitting down calm, playing with his blocks or cars then all of a sudden he’d get up and start yelling/screaming throughout the house and it’d take literally restraining him for him to stop. We also found his playing hadn't really advanced. He was still playing with the same toys: blocks and cars by lining them up. He never wanted to play with anyone but himself and when we tried to encourage it, someone usually got hurt. He had already been kicked out of two daycares and was at his third. He kept regressing with potty training which we later discovered would be a pattern for him in the coming years. When it was happening though, it was very upsetting. We just wanted our son to progress through toddler life like our other children did. We were in complete and utter denial that our child wasn’t like others. He was very morbid, obsessed with causing pain and death. He was coming up with clever ways to hurt himself and others. He even tried to jump out of the car a few times. I had been a stay at home mom for a year; it was hard and a lot of work but denial has no bounds. The daycare director forever changed our life. She called me in one day and explained they cared for Noah deeply but he could no longer be there as he was now a liability but she urged for me to have him evaluated through CARDS. I was a psychology major so I was educated enough to know what that meant. Education prepares you for many facets of life but in no way does it prepare you for this kind of decision as a parent. I wanted to call them but I didn't. I cried and researched a lot. Everywhere I looked, he met most symptoms of autism but not all. When I’d read about a child with bipolar it always fit Noah exactly. But that was something I just didn't want to face. I would’ve rather had an autistic child then a bipolar one. It never occurred to me that he could possibly be both. My mother is bipolar and I was not yet diagnosed with bipolar so it was a very sensitive issue for me. Regardless, what he did or didn't have there was something wrong and we needed help for him. In March 2011, I made the first step in this process. I called a recommended CARD specialist and made an appointment. I was FLOORED when they told me there was a 6-24 month wait. My son would be almost 6 by that time. I made the appointment anyway; they sent me the booklet of paperwork to fill out. I just couldn't stop there though. So, I became the diligent mother and researched 6-8 hours some days. I found that he’d probably qualify for services through the school district for Pre-K the following year. I started that long process and they tested him that May. They found him below the 1 percentile in development and in need of speech therapy. But before we even made it to the IEP meeting in June, we met a huge crisis: Noah had begun to present with symptoms of psychosis. He was paranoid. My husband would put him to bed by rubbing his hair and Noah would yell for him to stop hurting him. I’d walk him to the car and he’d yell at me to stop doing this to him and that I’m always trying to hurt him. We’d be in the store when Noah would start rapidly shaking his head left to right and yell for everyone to stop looking and talking to him. It was very concerning. It was also concerning how he’d argue with himself very violently. It was where he’d argue with “the bad guys” as he called them. It wasn't until my husband told me Noah killed a kitten that I was officially beyond worried. The details of how the kitten was killed are unknown. Noah ran in the room, locked the door and when my husband finally got it unlocked, the kitten was dead. People have their opinions on what it means that he killed an animal at age 3. We weren’t as concerned with the actions as we were with the following reaction. He showed absolute no remorse and was actually proud that he did it. Then the next day, he had completely forgotten he did it. That is the day I started to make calls to a psychiatrist. Regardless of how I felt about my son having or not having a mental illness, his wellbeing meant more to me than my own issues. You’d think everything I have said so far would make it where any psychiatrist would be jumping to see him. I made probably 10-15 calls. Some wouldn't take his insurance (we finally had him on state insurance for children with special needs), half of the others wanted him to see the therapist before the psychiatrist which was a 2-3 month wait, and the others were sure I was making it up. He saw an outpatient therapist for 2 months which diagnosed him with sensory processing disorder due to his age, it was a moot point. His psychotic symptoms were progressively getting worse and his sleeping habits were bordering dangerous. It’d take us 2-3 hours to put him to bed and then he'd wake up 5-6 times. It came to a point where we’d have to take shifts or barricade our door shut so he couldn't get out. Even during the day he had escaping issues. We always had to keep the door chain locked as he’d be gone in 5 seconds flat so at night caution had to be used. We were relieved when the CARDS specialist’s office called us. We were a little taken back that we had an appointment in just 4 short months! However, it was with their neurologist and not their developmental pediatrician that usually handles children alleged to be on the spectrum. But we didn't care, a specialist was going to see our son that year and we were stoked! However, good days are usually followed by horrible days. In July 2011, things came to a complete stop for us. We had gone 3 days with Noah sleeping a total of 6 hour. Then I saw Noah holding a butter knife to my 6 year old's neck telling her he was going to slice her head off. After much debate, we came to the conclusion that for the safety of the family the best thing to do was to admit him to the local children's hospital. I thought we’d get help. However, all we got was 4 very long days and a couple of routine blood tests. No EEG, no MRI, no genetic testing, and they sent us home pretty much saying just to deal with it. For reasons that I will explain on a later entry, I decided to seek out professional help for myself so I could be the strongest and best mother I could be to Noah. I was diagnosed with Bipolar I and generalized anxiety. Shortly after, he started school in August 2011 which did help to have teachers more experienced in special needs and the speech therapy was incredible! For the first time ever, we could clearly understand what he was saying! Those days seem like such a long time away. It was only a year ago but this last year has been so difficult and so emotional.

I have learned to stop saying, “This is the worst Noah can get.” Sure enough, a year following, he will be worse. We just take it day by day. Celebrating our great days and pushing through our ‘not so great’ days. With no help from any outside sources, a CARDS appointment still not until November, and constant calls from Noah’s school, I was desperate. I did something that I thought would not work. I took my son into the intake day at a local community mental health center. I circled the ‘homicidal and suicidal’ as he was qualified since he was a harm to himself and others. I had an appointment with the child nurse practitioner at 1 pm that same day (there’s usually a 4-6 week wait). Finally someone took me seriously. We got started on a path of medicine. I won’t list his medication trials but they tried non-invasive meds like Clonidine that normally work for young ADHD children and it just wasn’t enough. His psychosis was getting worse but now thanks to speech therapy Noah could talk and tell her about the bad guys that tell him to hurt his siblings and even himself. We finally got some diagnoses for Noah: PDD-NOS (autism), Mood Disorder-NOS, and ADHD. Shortly after, Noah’s appointment with CARDS had come. By this time, I had given up the thought of my son being autistic. The neurologist even noted he presents with some PDD symptoms but that the label would probably fall off in a few months. She was more concerned with the hallucinations he was having during the 4 hour evaluation. The final diagnosis was rapid mood changes with possible underlying psychosis, hypotonia (low muscle tone), and articulation disorder. She ordered genetic and Fragile-X testing, a MRI, and EEG which we are still going through the process of getting some of that done. The genetic test came back abnormal. A geneticist in August of this year interpreted the results as confirming things we already knew (autism, hypotonia, and developmental delay). We also got assigned a target case worker which helped us get into their child psychiatrist so we could have someone with a better expertise help our son. No offense to her, she was wonderful but the problems we were having were intense and I knew that the normal meds that were supposed to help him weren’t and we were about to enter some complicated medication changes. We also got approved for SSI-Disability for him in only 6 weeks! They also dropped his Developmentally Delayed label at school and updated it to EB/D for this year for Kindergarten. It seems just when we think he’s stabilizing on meds, his mania breaks through. The psychiatrist told us early on that he thought Noah was bipolar but he just wasn’t comfortable diagnosing him with that which we understood. After 2 months of solid mania, hypersexuality, and the closest we have ever came to Noah being baker-acted (Florida’s label of involuntarily hospitalization), his psychiatrist has now given him the final diagnosis of autism, Bipolar I, and ADHD. He did explain that due to some symptoms that are too strong to discard (sensory, developmental delay, OCD issues, how socially inappropriate he is, and Noah's lack of emotion) he is leaving his autism diagnosis on long term if not permanently. He is going through the tests to rule out any other issues that sometimes occur with autism (genetic disorders and such) but to finally have something solid is like feeling you’re on top of the world. This last mania lasted so long and it took him taking his med dosage x4 to bring him down. He’s stabilizing finally and I finally feel like it’s something solid. But I don’t hold my breath; I take it one day at a time. I have been working for the last 5 months but every day I feel that they are going to fire me at any moment because if I get that call for my son, I am leaving. He is my everything and worth more to me than a paycheck. The entire reason for me starting this blog is to supplement income where I can stay at home with him so if you see links for donation, I am not money hungry. I am simply trying to make ends meet while being the best mother I can be (plus 50% of it goes to NAMI).

I talked to my stepmom last night and I wanted to end this blog entry with my response. She asked me how my other kids handle this situation with Noah:

They deal but they've been dealing this since they were real little so it's just normal to them that their little brother isn't normal. But sometimes I see them acting way above their age, trying to calm Noah down themselves, rubbing his head, or trying to distract him from what he's currently raging about. If he hurts them, they just say that they know he doesn't mean it. While I LOVE that I have beautiful, generous, and loving children, it's not their job to be 6 and 8 going on 30. It's their job to be children so I have to find the balance of caring for my disabled child but also giving the life that my other children deserve. No one ever told me how to deal with this or that it would even be a possibility. As a young woman, it's a lot to take in sometimes but I feel like well, what choice do I have? I am here; Noah didn't ask to be this way. He's just here and really confused that everyone doesn't see the world in the way he does.

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