My heart breaks when I see children who are struggling with anxiety, depression, ADHD, sensory issues or other challenges that specifically affect how they experience the world and relationships. I have often referenced Maslow’s Hierarchy of Needs when discussing my childhood challenges. My loose interpretation, if basic needs are not met, a child has difficulty moving through the stages of emotional, social and psychological maturity. Even if they are “forced” to move through them, if their foundation is not solid at each level, at some point the floor will collapse. They will then fall to the last level at which they had a solid foundation. When this happens later in life, it is makes the process more challenging and often more complicated as it may occur after one is already married and/or has children. The spouse and children are then impacted by the sudden change in the person’s emotional availability. It is my theory that one of the greatest ways we impede this process of growth is when, we as parents, let our pride and appearance become more important than the growth of our child. I am not advocating for “free-for-all” parenting with few rules and all out experimentation, but I am advocating for getting our priorities right. Teaching and requiring our children to be respectful, kind, polite, honest are more important than insisting that their clothes match, their hair is done the way we think it should be or whether they are fitting in with the right clique. But, I digress, I am not here to promote my parenting theories, my point is the importance of seeing the real needs of our children and not getting lost in the superficial. I have a friend who has a child on the autism spectrum, who shared the following quote; “My child is not giving me a hard time; my child is having a hard time”. Just like any other investment, the time we take to find out why our child is acting as they are will be very worthwhile. Often our child doesn’t have the words to express what they are experiencing inside and therefore they act out in ways to get our attention. I am not naive enough to know that children will play us, but more often than not, they are trying to communicate that something is distressing to them. If we don’t take the time to understand what that is and work with them to develop the skills to cope, we are doing them a disservice. Eventually it may lead to a lack of trust in our love for them, which will impede their emotional growth and ability to have healthy relationships in their life. Yes, it is time consuming and yes, it may make you late for appointments, but if you take the time to figure it out, it will create a happier and healthier environment for you and your child. So if your child seems to be distressed by something that you think they need to just get over or be “pushed” through, I would encourage you to give it a closer look. Your child is not you, they are not experiencing the world the way you are. Of course, most of us with children already feel there is never enough time, but I would suggest that there may be a great deal of things you can give up in order to address the situation and get your child help as quickly as you possible. Give up the lessons, the play groups, the camps and clubs (this doesn’t have to be permanent). Use that time and money to take your child to a professional for an evaluation, give them an opportunity to try therapy and, when appropriate, try a medication that has been developed to help them. Recognize that getting into specialists; assessments; regular therapy appointments; finding the correct medication; researching, interviewing and finding doctors and specialists you and your child are comfortable with will take time and perseverance. Let your child know that there may be some ups and downs and that some things won’t work, but that you will just keep trying because you want them to be as healthy as possible. Don’t delay in this process, set appointments now, if you have concerns, it may take as much as three months to see specialists like psychologists and psychiatrists. Don’t wait until you find the perfect doctor, be willing to drive a distance, get a babysitter, do whatever it takes. Most parents, who I know, sacrifice tremendously for their children to give them the most opportunities and best upbringing they can. Rearrange your priorities, your child is vulnerable, they are relying on you to get them the help they need. You wouldn’t delay getting your child to the doctor if they showed signs of strep throat; and if they tested positive you would get them on penicillin. Do the same for them if you see that anxiety, depression, OCD, ADD, etc. are impacting their quality of life; chances are you will recognize it because it is impacting you and your family’s quality of life and emotional health. If you are uncomfortable with medications or psychologists, I would encourage you to recognize that these are proven resources; at least meet with doctors and discuss your concerns with them. Prior to the public awareness of children with sensory issues, I failed to handle my daughter’s challenge with this issue in the best way. From a very young age, she would “freak out” about her clothes. Before she could identify specifics, I saw these freak outs as frustrating tantrums that prevented us being able to get out the door in a timely fashion and sometimes at all! Later, she was able to tell me that tags, sock seams and stiff clothing were uncomfortable on her body. Dressing a little girl is often a dream of mothers and it was for me. I wanted her in frilly, lacy dresses, cute overalls and little jeans. She wanted to be in pants, tops and dresses that were made of soft stretchy fabric. It seems silly now that I would have let my opinions about her clothing be more important than her distress, but I had a lot to learn, just like most parents. When I got down to the bottom of it, looking beyond the tantrums, I was able to recognize it was causing her real distress. From then on, I would never buy clothes without her helping me pick them out. This issue of clothing was not just uncomfortable for her, it was distressing to her- that is why she wasn’t just whining about her clothes, she was “freaking out”. She needed to communicate the seriousness of it to me. Of course, we had lessons on using words to communicate, but often children do not have the words and I hadn’t even heard of, “Sensory Processing Issues”. Medication and children, it is a touchy subject and I can understand why, but I want to go back to my experience. Let me preface, by acknowledging that many medications are inappropriate to start children on before a certain age. Respect that restriction and adjust your world and your child’s world to what works and use other resources that are available. However, when the time is appropriate and your child is still struggling and has a sound diagnosis from a trusted medical professional, please consider medication. As I have explained in a previous post, imagine living your life 10 steps below your neighbors, friends, co-workers and/or classmates. Even with the strongest will and hardest work ethic, you are using considerable emotional energy to just reach step 5 and then you are expected to function similar to others although you are 5 steps below everyone. Once, I was on the correct medication, I was only 5 steps below everyone and so yes, I had to stretch further to meet the normal demands of the day, but life was so much happier and way less exhausting. I could experience a fuller life and my self-esteem was able to grow. The medication wasn’t giving me self-esteem, it was giving me the ability to have more success in what I wanted to accomplish; who I wanted to be was now within reach. Please recognize that your children need every resource you can find for them and make this investment; don’t push them beyond what they can do because of appearances. It won’t do you or them any good. Try considering the worst-case scenario, for instance, your child is overwhelmed trying to attend school regularly and get the treatment they need. Your child's ability to feel happy, healthy and comfortable in their world is much more important than missing school several months or even a year of school. As a parent, your attitude will influence your child’s attitude; if you don’t act like it is the end of the world and let your child know that adjustments can always be made, they won’t feel like it is the end of the world. In the scheme of things, we are talking about 1 year of a life that might last 80 years or more. It is important to have perspective! I am aware of more than one family where the parents cannot agree upon the treatment for the child. More often than not, it is the father who objects to medications and therapy. In marriage, we often have to choose our battles, I would recommend choosing this battle. Let something else go if you need to. Usually, the father comes around when they see the positive results. This is not an easy path, but it is an investment as much as any lesson, camp, educational opportunity you provide for your child. If you are a religious person, pray for the strength to help your child. If you are not a religious person, take courage and persevere- I know you can do it! Parents are always stronger than they realize when it comes to giving their child the best they have!
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The importance and beauty of receiving validation is that, how a person feels does not require a defence using quantifiable facts, but is rather acknowledged, on its own, as real.
Why would anyone say, “I wish I had cancer”? Yet, I have said it myself and found that I am not the only person living with a mental illness to say or think the same thing. Of course, we don’t want cancer and I can’t pretend to have any comprehension of what it must be like to have cancer or watch a loved one suffer from the devastating effects and treatment. What we are really saying is that we ache to be able to share our diagnosis and receive the same outpouring of love, compassion, sympathy and support we see given to someone who shares their cancer diagnosis. Just as a person who has cancer has pain, treatment challenges, decreased independence, extra strain on their family, the need for a listening ear, financial devastation and/or the loss of employment those of us with mental illness experience the same. Our hearts ache to be received and treated with the same compassion and support. We wish we could speak up and say, "I have bipolar", and have complete confidence that people will rally around us. Perhaps this sounds selfish or even jealous; however, it is not that we want those with cancer, or any other serious illness, to receive any less support, we just wish that we could receive it as well. The Susan G. Komen Foundation is a tremendous example of how a once taboo subject and diagnosis have been transformed. I dream of the time when mental illnesses can receive the equivalent research funding, public support and nonjudgemental embrace that breast cancer receives. That is the reason I am writing this blog, if I have the ability to speak up I need too, otherwise, illnesses such as bipolar disorder will continue to weighed down by stigma. I have been thankful to see the progress that we have made in many more people being able to openly discuss their diagnosis of depression or anxiety and be received with support and compassion. I look forward to the day when those of us with bipolar disorder will be received that way as well. I am also grateful for the public figures with bipolar disorder who have “come out” and shared their diagnosis and experiences. Perhaps a sliver lining to my current situation is that I may openly speak out about my illness without fear of it negatively impacting my career. I understand that others do not have that luxury...perhaps the only time unemployment could be considered a luxury. If you live in the U.S., you have most likely experienced the frustrations associated with filing taxes, obtaining a driver’s license or a social security card; and perhaps that is the extent of your interaction with government processes. Imagine magnifying those frustrations, add a constant stream of requests for documents, lengthy forms to be completed, and conflicting due dates, which jeopardize your ability to receive assistance. Then imagine doing all this when you are very ill, can’t think clearly and can hardly leave your house. It sounds like something you would want to avoid. I don’t personally know anyone who is homeless, but I can understand the thought of giving up and finding oneself trying to survive on the streets when facing this challenging situation. It also explains why, I have chosen to repeatedly get job after job rather than seek assistance, even when I am in a desperate place. Luckily, I have been blessed to have friends, family and my church to catch me before I reach rock bottom. To be fair, I feel that the process of receiving food stamps is very efficient and can be escalated if a person is in desperate circumstances. In previous posts I have spoken about the challenges I have specifically faced in this past year and a half, including taking short term disability (STD) and losing my job due to illness. What I now want to share is the “non-medical” side of this past 18 months. I was blessed to have a job where I could apply for STD and LTD (long term disability), any costs were paid for by my employer. The STD was rather quickly approved, I received 60% of my pay for 13 weeks. As my health problems looked to last longer than 13 weeks, I then applied for LTD, this was again through my employer’s private insurance company. I was told that I should also apply for Social Security Disability (SSD) at the same time. I did all of this. I was granted the STD, but denied LTD. The process of assessing my need for LTD was to request all medical notes and any tests from the doctors who were treating me. This involved phone calls, faxes, email, mail, and trying to make sure the proper information was being given to the correct person and confirm receipt to meet the deadlines. Throughout this process, I continued to direct the insurance company to my psychologist as he had a very good idea, including a great amount of detail, about how poorly I was doing. Although, the company took copies of all his notes-- I was meeting with him at least every two weeks for 50 minutes. This gave me a chance to share much more information than I could in the 15 minute appointments with my psychiatrist. Long story short, I was denied, in good part because the insurance company wanted a definitive statement that I was not able to work, and when my psychiatrist would not give it, they brought in an outside doctor who spent all of five minutes discussing my case with my psychologist. I was denied LTD, which I appealed and which I was denied a second time. It was frustrating and it would have been a great help to have been receiving LTD (50% of my salary) all these months. However, I understood as a private insurance company, they really had the freedom to choose whatever parameters they wanted and deny me if I did not fall within them. Therefore, I knew it was a 50/50 chance. As I had been required, I had filed for SSD, I retained a disability attorney, which was highly recommended if I wanted any chance of being approved. She also had me apply for SSDI (Social Security Disability Insurance). At the time I retained her, she explained the way the process of applying worked. She stated that 90% plus of all disability applications are denied the first time a person applies, hence my subtitle, “Guilty Until Proven Innocent”. I was given massive amounts of paperwork to complete and again my doctors’ notes were requested, they had forms to complete, etc. Clearly, an attorney was needed to manage the what, how and when for the application process. I put more trust in her than I would have otherwise. My cognition and memory were still diminished and so the challenge of just doing my part was already a stretch. I won’t go through the step by step process, but here are the things that I would recommend if you go through this process.
My current status on the disability front; I have been denied twice due to two incompetent psychiatrists and I am now waiting to see a judge, which takes 12 to 15 months. In the meantime, trying to receive financial or medical assistance is difficult since it looks like I don’t have a disability and I am just trying to work the system. A final note, there was a stark contrast in the way I was being treated by my psychiatrist prior to my application for disability. In fact, I had been seeing him for two years, without a problem, prior to this. Once I applied for disability I was viewed and treated in a completely different manner . This is maddening; to add insult to injury, I have an illness for which I am discriminated against and then when I try get help, the very medical professionals who are supposed to be treating me, discriminate against me. As promised, I will write about some of the legislation that is being pushed to make some improvements in our medical treatment, but as usual I have given you plenty to read for now. Keep hope, honestly, it gets better; even with all these trials, I have so many blessings that keep me buoyed up. |
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