It’s that time of year again. A few weeks ago I started getting notes home from my daughter’s special needs school, first reminding, then begging me, to please send in this year’s parent intake form
This is the form that asks me questions such as, do I think my special needs daughter will be her own guardian? (No.) Or, what are my hopes for her future? (I have no idea. I can’t tell you what she is going to be like five minutes from now.)
My distaste for this form is not a secret to anyone who knows me.
A few weeks ago, my husband and I went to Lizzy’s open school night. When I sat at her desk, I saw the dreaded form. It was with a copy of her daily schedule, the sticker chart for short-term rewards she earns for unpacking her backpack or cleaning up her snack without complaint (When she gets three, she gets to visit the school’s fish tank, which she loves). There was also a box of tokens she earns for finishing a math or reading assignment, (With 20 tokens she gets a “shopping” trip to the treasure box, where she can pick a piece of costume jewelry which she adores). These are things that are appropriate for a typical child of 5 or 6, not a 14-year-old in the eighth grade.
“Kathy, I know you hate this form. I’m sorry.” I looked up and my daughter’s teacher was staring at me. My face has never been great at hiding my feelings.
“I’m sorry. I know it’s not your fault. I don’t mean to give you a hard time.” The parent of Lizzy’s best friend was sitting next to me.
“I hate these forms, too. I never know what to say when they ask what job or career my child has an interest in.”
“Oh, I write that Lizzy wants to be a princess, and though we understand that there are only a limited number of positions available, we think if anyone can figure it out, she can.”
“Do you really?”
Both Mrs. B and I answered yes at the same time. Then we all laughed.
Once we got home I put the form in the box where I keep all things I would rather not deal with.
After my third note home asking me to please send in the form, I finally sat down and started to fill it out. And, shock of all shocks, it wasn’t as depressing as it usually is.
This year Lizzy’s program includes off-campus job training. This means that once a week my daughter heads out with her teacher, support staff and classmates to Applebee’s. Her job the last few weeks has been cleaning and arranging the menus. She takes them off the tables, cleans them off and then puts them back on the tables. It’s not that different from the same task I had when I worked as a hostess in a trendy New York restaurant some 30 years ago when I was still trying to be an actor.
Every third Tuesday Lizzy’s class heads out for travel training. This entails teaching the kids to take public transportation and get out in the community. Her first outing was to the arts and crafts store, Michaels, where the kids had a scavenger hunt and then picked out and purchased a craft for Halloween. Last week’s trip included a demonstration at the Microsoft store and lunch at the Cheesecake Factory.
My daughter is having a ball, but the bonus is that she is learning important skills about showing up for a job, taking instructions, and getting rewarded for a job well done. After their shift, the kids get to order a soda and socialize with their friends for a bit. She is also gaining some confidence as she is praised by her teachers and the restaurant manager. She is also getting the chance to go to a store without me or my husband glued to her side.
Lizzy’s new experiences have changed the way I approached this year’s form. I could see that she might be able to find a job that is right for her and gain a little of the independence I know she craves. I still don’t know what the future will hold for my daughter, but I see possibilities that I didn’t before.
Of course none of this would be possible if we didn’t live in a community that has a school like the one my daughter attends. We are dependent on the laws that say our child has the right to a fair and equal education. And we are lucky enough to live in a town where there are options for children who, like our daughter, need more than what our district’s schools can provide.
I am not blind to the fact that our fate is dependent on lawmakers with the awareness that our society as a whole is better served if the weakest members have every opportunity they can have. And voters who agree.
I’m not going to lie, filling out the form was not a joyful experience. But this year there was a glimmer of hope that wasn’t there before. And for that, this mom is eternally grateful for every lawmaker, business owner, taxpayer, teacher, and professional that makes this possible.
Janine Huldie says
Aw, Kathy glad that this year that filling out that form for Lizzy wasn’t as painful as it has been in years past. Also, so happy to hear that she is enjoying her internship at Applebee’s. Definitely sounds like a wonderful opportunity for her and her classmates to me. Hugs and also loved the pic you shared above her her, as well xoxo 🙂
Janine Huldie recently posted…5 Easy Ways to Stay Cold Sore Free This Winter + Crockpot Creamy Mashed Potatoes Recipe
Kate Mayer says
She’s learning and growing and i love that you honor all of her success. She will be a princess, a princess with a plan. Fill out the form, write down princess. I would. And I promise to vote for lawmakers that make her story a successful one.
Lisa Weinstein says
Kathy – congrats to Lizzy on such a great job! My company, BAYADA Home Health Care, has a specialty practice called Habilitation. Unlike “rehabilitation” which teaches people skills they may have lost due to illness, injury, or surgery – Habilitation teaches people skills they never had. They work with the developmental and intellectual disabilities population. Services are provided through a state waiver and the rules and regs vary from state to state. Depending on the level of need and funding, each client works with an aide on their goals, which are set by the case managers through the waiver program. Many of the goals are similar to what you described that Lizzy is doing. Showing up for a job, taking instructions, learning to purchase something in a store. We care for people from childhood to adulthood. Right now, we only have Habilitation offices in North Carolina, PA, and Hawaii. However, I am sure there are other agencies in New York that offer this type of service. Lizzy may be eligible when she is an adult after she ages out of the school she is in. I can see about getting more information about program in NY. Let me know if you’re interested.
Kathy Radigan says
There are a lot of options for us to look into for when she ages out of her program at 21. We will have to start early as many of the best have waiting lists. I so appreciate your info and will totally be picking your brain in the next few years! xoxoxo Thank you sweet friend! xo
I agree with Kate. Write down princess. In fact, I think ” go ahead, write down princess” could be the next big catch phrase. Loved this essay. Lizzy sounds awesome.♡
Kathy Radigan says
I did it again, for the fourth time in a row!!! Though i did also add model because she got to participate in a fashion show as a special needs model!! Thanks so much! xo
Jennifer Weedon Palazzo says
Those new programs sound great! It is amazing how many kids get to college and don’t know how to take public transportation or clean their own apartments. I hope Lizzy has a fun time!
Jennifer Weedon Palazzo recently posted…#BadAssMoms | Breastfeeding in Combat Boots MomCaveLIVE
I still think that Princess job will be hers when it comes up.
I’m glad she is thriving at the school! If you don’t mind me asking, is it a public or private school?
My son is 5 and has autism. I loathe those forms, and I always have-my oldest is 16!
When it comes to Nathan, I’d rather have my toenails ripped off than do paperwork-especially when I don’t see the need. I understand putting it off!
I’m new to your blog! Can’t wait to look around!
Kathy Radigan says
Thanks! Lizzy is now in a private school. But even if she was in our public school I would have to fill out the forms. And yes, I would rather pull out my toenails too. I really, really, hate those forms!! Welcome to my blog, hope you get possessed! Lol! xo
jane do says
I am so glad your daughter is having such a great experience and learning new skills for work and being out in the community! I have a special needs teenager too, and my husband and I recently had to fill out similar paperwork for a neuro-psych eval for him, hoping he can get the right diagnosis for disability services through our state. It was very humbling and depressing. Wishing you guys the best. Sounds like she is at a great school.