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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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.
OMG Steph! I'm sooo sorry. I cannot imagine everything that you are going through! It has to be so scary with not knowing what the future holds for you guys. Are you no longer putting him into that center for long term care? I'm glad you were finally able to get answers and figure out what is going on with your son. I don't down you at all for anything that you did, I completely understand what it's like having 3 kids and having to work full time and/or go to school full time along with taking care of a family! You're a great mother, don't ever let anyone put you down for you decisions that you've made!
ReplyDeleteThank you so much for your support, Wendy! That means so much to me.
ReplyDeleteAs far as the residential treatment center, we are waiting for the insurance to approve it. There is a fair chance they may deny it. He is only 5 (and barely since his birthday was on Friday lol) and they want to see him having as many outpatient services as possible but the problem is that no therapist can see him here because of his age so we're at a really tough spot. We don't even have a place that will hospitalize him besides MHRC and I refuse to let that happen. I would quit my job, have Lonnie and the other kids go stay with his mother before that would happen. There's no real inpatient place aside from the residential program that will take him until he's 6 years old. It's hard but we will keep pressing! It's all we can do.
I am glad I could finally write this. I know a lot of people were wondering why I was even thinking about putting Noah in a long term facility but this was a story that has literally taken me 4+ hours to write so I am glad that not only my viewers but also my friends can see a glimpse inside our life with Noah. It's not always pretty but it's the hand we were dealt!
I knew most of Noah's story but it is great to see it in a timeline. Its a lot easier to remember that way. I know you guys have had a difficult time with doing right by Noah and the other kids. Just remember you do have people around you that support you! You are such a strong person, even if you don't believe it sometimes, and a great Mom!
ReplyDeleteI <3 you so much Ashley! I am going to have to come down to see you for a weekend sometime soon. You handled the Noah situation so great at his birthday party and you really have been probably the best and truest friend I've had through this entire ordeal. Some days you give me great words of wisdom, other days when you have possibly no idea what to say you never say "I am sorry" or "I could only imagine." You just shut up and let me vent. :)
ReplyDelete