Monday, December 20, 2010

Excuses, 2010 Edition

"Excuses, 2010 Edition" is the short title for this blog. If I had enough room in the little box, this would actually be called, "Why I never catch up on laundry, return a friend's phone call, answer an e-mail in a timely manner, attend a PTA meeting or remember what my name even is."

If I may pat myself on the back for a second, I think I do quite well managing to organize the insane mess I have been handed, but I know it is still not good enough. I am aware that it is frowned upon that I haven't been more present at school events, that I sometimes forget special occasions and that I probably unintentionally hurt feelings when I have to cancel plans.

The thing is, while I may look like a slacker to the unknowing public, I have, in fact, been quite busy. It may sound selfish, but my kids come first. Period. They come before that school event someone asked me to help with, they come before chores and cooking, and they even (as much as this pains me), come before my dear friends' needs.

So what have I been up to that drains so much of my time? I have been getting prescriptions, researching the drugs, and picking the medicines up from pharmacies. Some of the drugs can only be found at specialty places with limited hours. Sometimes we have problems with refills or side effects that warrant more phone calls and worry. On a daily basis, I measure and administer nine doses of various medications for my kids if they are healthy. If anyone has an infection on top of this, it adds complication.

I have been taking my toddler to various doctors of different specialties to make sure his needs are being met and to search for answers. Sometimes there are medical procedures involved, and there have also been some overnights at the hospital. Sometimes my older kids have medical issues that need addressing, too, and that can be really draining when everything happens at once.

I have been taking my two year old to pediatric therapies, and sitting in on the sessions, five times a week. This is an ongoing process with no end being mentioned. None of the appointments are overly close to my house, and it also takes time and effort to make sure the therapists are addressing all his needs. I have to stay on top of the goals, and struggle to even remember what they are all sometimes, as we have so many.

I have been reading. I do read for fun, but I also read about autism, about allergies, about ataxia, speech delay, reflux, special education. and anything else that pertains to what we are currently going through.

I have been attending lectures and workshops. I go to as many free events that apply to us as I can. I think knowledge is key when it comes to empowering myself.

I have been teaching my two and a half year old to eat. I have been on the phone with his gastro doctor's nurse weekly. I have fretted about muscle tone, aspiration, calories, weight gain and his well-being. I have, with the help of my husband, weeded through the intricacies of insurances to obtain special formula, foods and liquid thickeners. Every outing requires a lot of planning, which is something normally reserved for parents of infants. I can't leave the house without sippy cups of the appropriate beverages as well as easy to chew and allergen-free snacks. When Joshua eats, I have to watch him carefully to hope he does not choke, and then I have a moment of panic if he does. Sometimes he gags and throws up during meals. Sometimes it happens when we are out in public. Sometimes people stare and my heart breaks a little. There are days Joshua eats no food at all.

I have been taking my oldest to autism support groups and playgroups as well as tracking his progress at school. I keep in close contact with his teachers, and I have to stay afloat on knowing his IEP goals. Sometimes there are meetings to attend, letters to write, or phone calls to make to assure that all is running smoothly. I have been focused on helping him to maintain a strong sense of self in a time when that challenges him. I have been talking him down from tantrums, helping him with homework that frustrates him greatly, and sometimes just rubbing his back and letting him cry wen it all becomes too much.

I have been attempting to be creative and active with my neuro-typical six year old, who needs mommy time in a desperate way. I have been giving him art projects, admiring his handwriting and driving him to soccer or karate.

You know what else I have been doing? I have been taking time to just "be" when I can, to appreciate, in rare, quiet moments, these beautiful children I have been given, or even to (gasp!) forget about mom issues and think about other stuff for a while. Some day I will be able to do more outside of my little bubble again. The rest of the world can wait while I focus on three little boys who can't.

Thursday, December 9, 2010

For What It Is Worth

I always enjoy reading books, articles or blogs with advice on how to handle different parenting situations. The best, of course, are those that come from someone on the front lines. I have been meaning to share my "worldly" advice on issues I deal with daily. Since our family has a few different medical or educational needs, I will just touch on two of them- food allergies and autism.

My first advice on dealing with food allergy in children is to downplay it when you can. Yes, if the child is severely allergic, they must be made aware, of course, and the school and everyone that comes in contact with the child needs to know the safe foods, or what to do if the child does have a reaction to something. But, the food allergy should not define the child, or make him feel strikingly different from his peers. Almost everyone has some sort of food allergy, sensitivity, or simply foods they do not care for. It has helped me a lot to point this out to my kids. The less limiting you make their allergy sound, the less limited they feel. Try to go to restaurants that list allergens online or have a helpful staff. Instead of looking at a menu and immediately telling your child what he or she cannot have, instead list what IS allowed. Sometimes, that list will actually be quite long. All of this being said, it is hard to constantly see certain foods (peanut, soy, or whatever your child's allergen is), as a form of poison. It is frustrating to always have to pack snacks for play dates,school or birthday parties. There are times I do find myself daydreaming about taking all three of my kids for a relaxing afternoon of pizza and ice cream. But, they have managed to branch out quite a bit, obtaining a taste for veggie sushi, hummus and salmon. My oldest children have become quite responsible about knowing what they can or cannot eat, or asking the right questions if they are unsure. My two year old will follow in those footsteps; I have no doubt!

The "biggie" on many parents' "what do I do now" moments is that time your child is diagnosed with some form of autism. Oh, how I truly want to hug everyone in that position right now and whisper, "it will be ok," even though I understand how hard that is to hear at first. The best advice I can give on raising a child with autism is this: Make memories with your kid. It is easier said than done. You have to mentally set aside time in which your brain will not be comparing him or her to peers, worrying what others think, or dwelling on milestones. You must find a way to be in the moment so that someday when you look back on this, you remember blowing bubbles, warm days at the park or family game night rather than a sea of appointments and uncertainty. Of course, as with any child, you need to accept your autistic child for who they are, and help them to do the same. I can say there will be moments to make you so proud you will cry with joy, just as there will be moments that will bring you to your knees in despair. Remember that you are not alone. There are billions of other parents sharing some form of your experiences with this disorder.

Every parents is a seasoned veteran in many areas. Food allergies and autism are just two of the issues that touch my heart, and that I like to try and help others with if they need or want the support. I definitely don't claim to be an expert in anything, but sometimes hearing one voice say, "I understand" is invaluable.

Friday, December 3, 2010

Giving Thanks

I noticed a lot of blogs on the theme of thankfulness right before Thanksgiving. I had planned to write my own, but I fell behind due to being sick. I figured that it is appropriate to be thankful any time of year at all, and so I will describe today the things I appreciate most in life.

I am thankful for the things that don't come easily. This may sound strange, but it is an interesting twist to take aspects of your life that you wish you could change, and find a silver lining to them. When I struggle with something, it makes me more sympathetic to people who also have similar issues, and I enjoy being able to understand how others may feel. One example for me right now are the migraines I suddenly have started getting. This has made me appreciate the days I do feel good, and it has made me obtain admiration for people who deal with chronic pain. I may not have understood before how hard it is to get through the day when feeling truly miserable. I might have taken my health for granted.

Along those lines, I am thankful for the weight I need to loose. Everyone has a cross to bear; something physical they want to change about themselves. This is mine. It keeps me humble and it gives me something to work towards. It would be nice to say the weight "just fell off" after having three kids, but numerous circumstances have kept this from being so. I am fully aware that success someday in this department will be more meaningful because it is taking so much time, and it isn't easy.

I am thankful for two parents who have always loved me unconditionally and encouraged me to live life my way. They never pushed me to be someone I am not, and they continue to support me in everything. I believe I was at an advantage in life starting out with such a positive upbringing.

I am grateful for the friends who have seen me through thick and thin. There is nothing more comforting than someone telling you that they remember where you have been, but that they can also see also where you are going. I have a lot of friends who constantly uplift me. Some of them are old friends from school, and some are newer friends who came to me through shared circumstances such as our children's activities or schools. All of them enrich my life.

I am thankful for my husband, an unsung hero who must see every side of me unfiltered, every day. I am happy for the strength he has to take over duties that seem to hard to me when I am overwhelmed, while he also works hard outside the home to provide for us.

Of course I am thankful for my children. I couldn't ask for anything more, and I celebrate their unique qualities, even when they can, at times, be frustrating. I am proud of the people they are becoming. Within that, I am thankful for the struggles we have had with things I never thought would be daily words for us... autism spectrum, cerebral palsy, developmental delays, food allergies, failure to thrive. A beautiful life comes out of raising children with special needs. I may have days of feeling sorry for ourselves, or for them, but I truly cannot imagine things being any differently, either.

I am thankful for my first "real" boyfriend, for teaching me about forgiveness and that love can endure over time, not in the way it started, or the way you might imagine it to be, but in a nice blending of shared memories and respect. I don't know that many people get to be in the unique situation to experience this.

I have great gratitude for our doctors, some of whom have gone beyond their call of duty for myself or my children. We are fortunate to have doctors who are willing to share their vast knowledge with us, while also being humble enough, when appropriate, to admit they do not have all the answers, either.

In relation to that, I am thankful for the pediatric therapists who have provided two of my kids with endless hours of help. I am most impressed with the ones who never say "He can't" or "He won't." That is what I need as a parent, to hear that the sky is the limit.

I am thankful for small things that make life fun, like lattes, a really good Mexican restaurant, a great laugh with a friend, an addictive television show, new shoes, or a pair of jeans that fit just right.

It would be impossible to list all the things I am thankful for, but these are some highlights. I think it would be beneficial to keep a running list in my head all year. On any given day, even on a horrible day, I bet I can think of at least five things to still be thankful for. It's hard to complain when there is still so much good all around, isn't it?