Lately I have taken to telling my 10-year-old that although it’s perfectly fine for him not to like to do something, such as homework or cleaning his room, he still has to do it.
Well apparently I have to start taking my own advice because I am on my third warning from my daughter’s special education teacher about getting in the (dreaded) Parent Intake Form. And it’s only been a week!
Yes it’s that time of year again, when I am asked to answer such questions like: “Do you feel your child will be his/her own legal guardian? (No) and, “What are your dreams/hopes for your child in the future?” (I don’t know and I don’t want to think about it.)
This September Lizzy moved up to a Junior/Senior high school for teenagers and young adults with special needs. Clearly my habit of procrastinating the task of filling out this form for weeks on end is not going to be tolerated here.
I have never done a good job of hiding just how much I hate these forms. I can’t stand having to answer questions that I really don’t have the answers to. Or perhaps the real problem is that I do know the answers, and I just don’t want to face them.
I have always wanted, and if I’m being really honest, needed, to be seen as the “good special needs mom.” The woman who doesn’t cause a problem, and is seen as cool. The lady that turns in every form and every check on time. Somebody who understands the reality of their child’s situation and deeply appreciates the time and skill of the professionals who are charged with taking care of her. I like that teachers have always felt comfortable sharing with me, and I have enjoyed getting to know them. I don’t want to be seen as the “difficult” parent.
But each year that this form comes home, I get angry that I am forced to put on paper what we all know, that Lizzy’s issues are severe. She will, in all likelihood require the type of care that can only be provided by her dad and me in our house or in a home for adults with special needs. She might be able to have a job, but only if she has constant supervision. When she turns 17, we will have to start making inquiries and arrangements, so that when she turns 18 we can be her legal guardians because there is no way she will ever be able to take care of herself.
Her abilities have always been all over the map. There are times when she can get herself dressed and make herself a snack. Then there are other times when she starts screaming nonsense phrases, or word salad, and it’s only when you see her that you know she is screaming, “My baby hippo lost his umbrella” because she has her head stuck in her shirt and needs help.
At times like these I have little sympathy for parents of children who may have special needs but fall into the “quirky” category. Children who need and receive services in school but will ultimately be able to live on their own. I don’t want to hear that they understand what I’m going through because they don’t. Just like I can’t begin to understand the feelings of parents whose children can’t do the things Lizzy can.
And I guess that is why I hate these forms so much. Once a year I have to put on paper the reality that I have always known. That as amazing as Lizzy is, and special as she is, she is profoundly disabled.
I may talk a good game, but I guess somewhere deep within my soul I am hoping that she will one day be able to do all the things that I know her brothers, my niece, and nephews will be able to do.
Once a year I’m forced to face somebody I really don’t like, the self-pitying, angry special needs mom that I do so well hiding the rest of the year. I’m really hoping that one of these days she goes away for good.
Until she does, I will break down and fill out the form, adding my apologies to the teacher for my forgetfulness and sincere thanks for her patience. The only nod I will give to my alter ego will be when I get to the last question, where I will give the same answer that I have given for three years straight.
In which career(s) or specific job(s) has your child expressed as interest.
Lizzy would like to be a princess. We do understand that there are only a limited number of positions available at this time, but we believe that if anyone can pull it off she can.
And once again, it will be the only answer that I truly believe.
Janine Huldie says
Aw, I still love your answer so very much and couldn’t agree with you more that if anyone can pull it off, it is Lizzy!! xoxo 😉
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Lisa Weinstein says
Kathy, you are allowed to be angry! You are allowed self pity! You are in a difficult situation and you don’t have to be the perfect special needs mom 24/7. Maybe the dreaded form is a good thing because it gives you a chance to express those emotions that you try so hard to push aside. Maybe the form is the chance for you to just, feel the way you feel….. and you know what? That’s ok. Sending love! ?♥️
Oh Kathy, my heart aches for you. I have nothing substantial to offer other than my adoration and unmitigated belief that you are already a perfect special needs mom. It’s right there, clear as day, in the struggle that you face answering those stupid formulated questions, as well as in your responses, which show such love and respect for Lizzy. Peace be with you, Mama.
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Karen Hug says
And Lizzy will make the most awesome princess. There’s no doubt in my mind that you are the very best Mom to Lizzy and her siblings. Sending you love and many hugs.
I think you should vent in the open more often because your struggle is real, as is the struggle of parents just like you all over the world. If everyone hid their pain, then the rest of us would never get to appreciate just how hard it is for the parents of special needs kids.
We have friends with a special needs daughter and we always marvel at their “strength.” I think they hide a lot from us though. I worry about whether she’ll ever get to go to prom or get a job or do the things that we take for granted, so I’m sure they must as well, only 100 times over!
You probably have a lot of people who want to help you, but they don’t know how or don’t think you need it because you put up such a brave front. Anyway, I’m about to ramble, so I’ll stop. Lol. Keep fighting the good fight, ma’am!
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I can’t stand these forms either. They sent one home the first week of school and I have yet to fill it out.
And as for Lizzy wanting to be a princess…I don’t even know her, but she is already a princess in my eyes. And you are Queen mom…seriously, the best!!
Kathy, my eyes are filled with tears, not just over your struggle, but that you see the precious beauty of her princess aspirations and accept them wit perfect heart, humor and reality. To me, this is why you are amazing. Praying you on, Mama!
Chris Carter says
*Tears* You are such a good mama… special needs mama as well. I’m sure that reality is so hard to ‘document’… and I can only imagine how difficult it is to do it over and over again.
I know you are not alone. I’m sharing so other special needs moms can be encouraged that they are not alone too.
Kenya G. Johnson says
You are a wonderful mother, if you weren’t you wouldn’t get angry. We (mothers) all talk a good game, and then we need to vent. You’re helping someone just by sharing your experience.
Deva Dalporto says
Beautiful. And she should be a princess. Why not???
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Carpool Goddess says
I love her career aspirations. Your daughter would make a wonderful princess! And you are a great mom. Those forms sound awful.
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Every one needs to vent, especially parents. Our feelings about our kids can be so very raw and powerful.
Those forms sound like they can be tough to fill out.
Rena McDaniel says
Kathy, I am so sorry that you have to deal with that year after year and you shouldn’t have to feel bad for how you feel about it. I don’t know what you go through, but I do know that you handle it with more wisdom, grace, and love than anybody I have ever known.
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Kelly Arnell says
Wow, I admire your strength, not only because you are a special needs mom but because you are able to face your weaknesses.
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Alexandra @ My Urban Family says
I admire your strength as well and really feel your answer is wonderful. Those questions wouldn’t get to you if you weren’t a great mother. Also, I’m pretty sure there are many children her age that would love to put down princess instead of a “real” career. And some adults 🙂
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