"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.