I have been avoiding the internet, blogging, and all things online for the past week or so. I have touched in with facebook, and occasionally made sure I didn’t have any important e-mails pending, but mostly I have gone off the grid. I have also been hiding in my room. Here is why: my son was just diagnosed with Apergers, OCD, ADHD, ODD, a mood disorder, social phobia, and sensory processing disorders. He may also have an eating disorder. In the last week, I have seen what it is like for a child to loose control and rage without remembering the incident, or even knowing why. I have watched my son struggle to understand why he has to take new medications everyday and what the name/label of Aspergers means. I have learned that I am not alone amongst even my neighbors in dealing with this disorder, and I have cried for the child that I thought I had.
Life was not fun this week, and this blog is about the joy in life. My son was the one thing in our lives that we could count on as being good. My husband and I both suffer from chronic illnesses, my pituitary gland has failed, and his stomach has major issues. We struggle financially and have to have regular help from family and friends. We are nearly at the point of declaring bankruptcy and may still have to. Our car spent all of August and September having just about every part repaired. I had to go to the ER twice this month just to be told that I have a massive bladder and kidney infection that they managed to miss the first time, and at my doctor’s visit that I had the next day. It is still not gone, and I’ve had it for a month or more. My neck hurts A LOT. I finally started to see a chiropractor and that is helping, but it is a slow process. My body tends toward inflammation and pain as I have fibromyalgia and some other autoimmune disorders. I am immunocompromised, and was told, rather bluntly, that I cannot work and should hire a lawyer and get on disability. So I had to quit the side jobs that I love, further hampering our financial situation, and causing me a lot of loss and sorrow. Then Benjamin was diagnosed. We knew he was anxious and struggling in school, but I did not truly expect all of this. I don’t know how to cope, or even where to start. So I hid.
I can’t hide anymore. My son is still the fantastic, yet quirky child that I adored a week ago, and this diagnosis just gives us tools and access to services that will maintain that reality. He will probably still marry and have a full and full-filling life. I will just have to teach him a lot more skills than I planned on. He will probably be teased, but usually won’t notice too much. He is happy in his quirkiness and his routines, and is totally obsessed with Lego’s. I think he will make a great Lego designer or engineer someday. He is also talented musically and in a musical theater group that he loves. His teacher has been amazing. She has taken this diagnosis in stride, and has already adjusted to the behaviors without a complaint. She listens to my concerns, and is willing to implement any classroom adjustments that we need. She even found a school friendship group that is run through the special education classroom for him to join so he can learn some necessary social skills. I love her, and am so grateful that he is in her class this year. Hopefully we can find equally amazing teachers for him every year. He is super smart, but doesn’t always show it because he is impatient, or he is set in his routine and doesn’t handle changes well. The things I worry about the most are his high levels of anxiety, and those times when he loses it because of overstimulation, or a change in routine. We have to teach him to be more flexible, but to do that, we have to push his limits, which is hard.
I have spent most of my adult life working with children with disabilities. I love working with autistic children, and have received a lot of training and read a lot of books. I have been prepared to be this child’s mother in ways that I would not have dreamed of 10 years ago. I love this work. I love autistic kids, their quirkiness, their unpredictability, the great joy when they gain a new skill or grasp a difficult concept. I know how to manage outbursts and what to do when they get overwhelmed and manic. I even know how to push them to teach them necessary skills. I love reading books on the subject, and have read tons of books on activities, methods, theories, diets and just about everything else. It is my passion to provide services and help for these families. I never expected to join them. From the outside looking in it is fascinating, and challenging and everything I love to do. As a parent of a child on the autism spectrum, it is scary, hard, and incredibly frustrating. I adore my son, and I will use all my knowledge and experience to give him the best possible services and life, but I have a new and profound sympathy and understanding of the mom’s that I have worked with and for. This is not easy. It would be easier to deny his illness and just let him be challenged at school and do whatever he wants at home, but that would not help him. I get the denial I see in some moms. I am not that mom. I am a mom who will fight.
I have spent years looking for cures, solutions, treatments, diagnosis, and other options for myself and my spouse. I love to read and research, and truly believe that I can find a way to improve my life and health through diet, energy medicine, or some other modality. I believe that I can help my son in the same way. He will go to friendship groups, and will receive behavioral therapy. We will do social stories and picture cues. I will teach him everything I can. His theater class will teach him to fake it in social situations, and we will nurture his interest in music, legos and all things digital. I will find the money to take him to holistic practitioners and chiropractors. I will also find the money and time to put him on the GF/CF diet and to weed out any other potential allergens or triggers.
I still want this blog to be about the joyful and fun in life, but it’s purpose must change with the change in my life. This blog will be about him as well. About our journey, and the things that I learn. I have another blog that deals with my illness and treatment, and I am working on becoming a health coach, and developing a program for online coaching and wellness. I hope that as I forge this new path I will make new friends, and inspire others. I hope that I can find a way to make blogging, and online health coaching a profitable business so we can afford the therapies and treatments that my son needs. It is not going to be an easy or “fun” journey, but I will still attempt to find the joy in life. My readers will still get product reviews, but they will reflect our special dietary needs and our journey towards socializing and teaching our child.
Please join me, help me, and even follow me on this journey. I need friends out there in the digital world who have already blazed this trail. I want to help those who come after me in their efforts to help their children, and I want to provide a forum for awareness and exploration. There is always a solution. I teach Suzuki violin and piano, and one of the main tenets of the Suzuki philosophy is that every child can learn to play an instrument. I believe that about everything. Every skill can be taught, every child can gain success to some measure. Some grasp things quickly and easily, others require more repetition and multiple explanations. It is all a matter of practice. So I will practice and so will my son. Please, if you have dealt with this, leave a comment with your best tip, your most useful resource, dietary and other suggestions. I am open to everything. I will try anything. Mostly I need help finding the funding for all of this, so if you know of program options, places to go, organizations that will help us, etc. I would be very appreciative. This has been a hard week, not the hardest of my life, but not the best either. We need help. We probably always will, and while asking is difficult, being alone on this journey would be worse.
2 thoughts on “Life Can Be Hard”
Natalie, I hope everyone is doing well.
Don’t get discouraged about how this impacts your childs future hon. My son sees a pediatrician that has aspergers. He is brilliant and accomplished, and I find him to be an inspiration, because he proves anything is possible with the right kind of support system.
Hi Natalie, I am so glad I read your post. I wanted to let you know that my son also has Asperger Syndrome. He is 27. Chris loves machines and still loves legos to this day. I can’t tell you how glad I am bout this obsession. That sounds strange I know but I talked to a lady whose son was16 at the time and his obsession was sex. I was so grateful that this was not our experience and decided I can handle an obsession with machines.
I also have fibromyalgia as well as several other health problems. Double jointedness aka hypermobility is a huge problem for me. It used to be cool to be extra bendy but now the joint pain is awful. I am in the process of being evaluated for a genetic connective tissue disorder called Ehlers Danlos Syndrome. I am a member of the Inspire boards about EDS through the http://www.ednf.org site. They have helped me tremendously even though I don’t have the diagnosis yet, and am worried that U of M will say I do not have it, even though I have 90% of the symptoms.
EDS causes the body to make bad collagen, which is everywhere in our bodies. I mention this because I have seen discussions on the EDS boards about their being a possible link between EDS and things like Asperger Syndrome, anxiety and more. This may not affect your family at all but I wanted to give the information just in case it may help someone who reads this. EDS definitely needs more awareness, even among the medical professional community.
I just want to add one thing I have learned. When a diagnosis like Aspergers is given it is good to have the information, but we are all still the same people, we just know better what we are dealing with. Feel free to contact me if you need any support from an AS parent though. My son is older and he has learned and grown so much. Big air hugs and Thank you so much for sharing your experience.