La Gloria's Blog

Aidan in Cali as of June 2011

My son Aidan is now occasionally wandering off—we found him on a busy street corner the other day, barefoot and mumbling about going to the library. He has no idea how to get to the library and these new acts of independence and defiance are partly age- appropriate and partly scare-the-shit-out-of-Mommy time. We are in a new city (that I love and he loves) with no family or real support network yet.  Aidan’s outbursts are getting more aggressive, so his dad and I have daily conference calls with each other, the school, doctors. We coordinate cross-country babysitting (I wish this were an exaggeration) because we know I am taking the brunt of this. While his dad would take him to live with him in a heartbeat, the reality is that Shane’s living situation would be much worse for Aidan, as are his schools/support system for him if that happens. So we make do and try to make THIS work. 

My guard is constantly up in public with Aidan and I jump when a bird tweets or a child laughs in the background—will this be the final straw in his tolerance level today? Does he have his headphones on and did we do enough brushing techniques today before we left the house? What about pressure? Is he going to freak out and knock a café table over or get so agitated that he will squeeze the hell out of a stranger? Did I mention I do this alone as I settle into a new job and city and try to figure out where the best grapefruit juice deals are for Aidan, not to mention libraries and bookstores?  

My ex-husband was in town last week and I said, “Hey, I will pay for dinner if you help me with Aidan in the restaurant, like taking him outside if he freaks out and I will pay the bill and we can go.” And he looked at me like I was insane and said “Uh, of course I will help you with OUR son in public.”

And we realized at that moment that I am just getting very, very used to doing this all alone. It was becoming a reality for us in Texas before the move, given my ex’s busy travel schedule and new obligations and my increasing desire to leave Austin.   

Fortunately, my ex has visited about 5 times since our recent move to California, and has come to terms with the fact that our son’s life here is MUCH more diverse and freer than it was in Texas.  Aidan is having a bunch of experiences—like riding the train and weekly jaunts to the beach (which he loves for sensory reasons), and easy access to city life and people. My ex tells me (reluctantly), “Well I want to see him every day but I can’t deny that he seems happy.” And that’s it. I don’t want my son to go back to Texas without me for the summer, but Aidan jumps up and down in front of the calendar when I talk about him going for a visit, so I have to assume he’s happy about it.

This is the way we do it, and the reality with a child like ours. It’s not easy, Aidan can’t be left alone for even 30 minutes like a lot of kids his age, or text me unassisted to tell me things and let me know if he’s ok or not. I am always gauging his moods and sickness and levels and teaching teaching teaching social skills. And I sometimes think I thought in the divorce that I was divorcing the idea of disability/autism and it would all go away. Wishful thinking.

It did not go away, and in fact got harder. We are moving toward self-sufficiency and what Aidan wants for his future, and ways to get him to express that and more importantly, live it. So his dad calls on speaker phone telling Aidan to behave for Mommy. And his dad will come back to LA to help fly Aidan in to Texas because we BOTH have to get on that plan back with this kid and pray to god there are no babbling babies on the return trip and Aidan can be sedated and have headphones and electronics otherwise he might try to take the plane down in a fit of rage.  That’s the way we do it.

Now, my ex could be a jerk and not come, but then he could leave all 5’3” of me to deal with an episode in public and the possibility of police officers and legal system trouble that he might be liable for—so yeah, he chooses to come and pray for the best to get the kid back for a summer visit.  

We will let you know how that turns out.

Why “Divorcing Autism”?

 **This does not contain special ed or disability advice or tips. For that or to book a consultation with me, please refer to www.specialedforbusyparents.com or www.gloriaperezwalker.com fortips or a list of my work experience.

Many want to know what it’s like being a divorced parent of a kid with autism—an adolescent kid with autism at that. I’m a special ed advocate AND a community organizer—both are exhausting  and wonderfully fulfilling at the same time. I love what I do. I have found my passion(s), and for that I am grateful.  Because of my organizing and political training, I am well aware of the intersections of what I confront daily, as a Latina, woman of color, single/divorced mother, within the disability and professional world and know better than to expect too much from the world that I won't have to push for.

That said, it took a lot internally to make a recent cross country move—at the time my ex-husband, Shane, was not happy about my choice. He’s still not happy about it but is making the best of it, thankfully.  That doesn’t mean things work smoothly, quite the opposite: our son Aidan is hard. Hard with a capital “H”. And our realities in raising growing boys on the spectrum is much different from typically-developing worries. I talked to a former client recently who told me the OCD tendencies within her son with AU (who is much higher-functioning than Aidan) has gotten to the point where he’s taking doors off hinges (checking to make sure they are closing correctly) and taking ceiling fans from the ceiling (checking obsessively to make sure light bulbs are in). She is scared for her safety and his increasing growth. He is only 14.

I have no answers. I am on the journey to lifelong caregiving (in some capacity or another) of a child with autism. I can go into the technical aspects of advocacy (IEP meetings, social services, insurance) but that’s not the purpose of Divorcing Autism. I am finding more and more that parents want to know they aren’t alone—especially those of us who are AU parents—and need to hear from others. We are isolated not only from the general public but even friends and family. And even ourselves—have you ever tried to do a playdate with 2 kids on the severe end of the spectrum?  (I’m still laughing about my last attempt.)

There are days of extreme guilt, that I took a better job for my career and that it had to involve moving states away from  his dad and my family. But I also have to realize that limiting myself doesn’t help me in raising my son, it only makes me a worse caregiver/mother/advocate.  And leaving Aidan would have been much harder, given his extreme closeness to me and my ease in advocating for him, it just comes naturally to me to look at the system around him and figure out how to maneuver things to get what he needs.

My ex (on a nice day) tells me the truth, which is, “You have spent many years on autism and disability. You have to do what you love and be happy because this is the way it will be forever.” That’s a hard one to swallow. If you are a parent of a child with a disability, learning the line of getting help –screaming, clawing, and pushing and fighting for that help—is something that becomes part of you. And for those of us who are natural fighters—I am one—it doesn’t fit in your idea of who you are to give up on that fight for your child.

But there is a line to doing what your child with a disability needs, doing what you need, and making it work with your ex. Because none of it—your child, your own dreams, and your ex (sorry!) are going away.

I want to point out that my ex and I do not get along every day. We argue about therapies, money, treatments, caregivers, school and scheduling. We hang up on each other and sometimes threaten each other. If you are a parent—and especially a co-parent—you probably know this well. I choose to show the end part of our process—which is that we somehow (and this must be divine intervention, really)—decide to do what is best for Aidan. That doesn’t come easily or naturally, but in the end we do it.

I have been promising friends and clients a series called Divorcing Autism for a year now, so here you go. This will be a combination of writing and radio segments regarding this issue. I am finding other parents have a lot to say about this, from the legalities of dealing with exes and coming to consensus on therapies and treatments and financial support, to managing IEP meetings and social security issues, to how to get your child to communicate using technology when they can’t, to dealing with your ex’s emotions about disability, to dating and career realities of raising a child with a disability alone. And I as always, have a lot to say about all of this.

Divorcing Autism is about the co-parenting journey of a child with autism who’s growing up faster than we thought and much differently than we ever thought. It is not about anything else.

-Gloria Perez-Walker

just had to share!

I have NO time to post lately (but will soon, all about our recent cross-country move, Aidan's progress, work, life, etc.). But I just had to share the following sig line in a friend's email. Pretty, pretty:

 

Supporting women of color and Indigenous women's right to decide:
 
If and when she will have a baby and the conditions under which she will give birth
 
If she will not have a baby and her options for preventing or ending a pregnancy
 
Parent the children she already has with the necessary social supports in safe environments and healthy communities, and without fear of violence from individuals or the government

IEPs on Pooping... with the Ex (Always!)

We recently had a hard IEP meeting for Aidan. It wasn't contentious so much as it required a lot of planning for the issue that Aidan was having around daily living skills. Basically, Aidan has had ongoing hygiene issues since he was little. It's really, really, REALLY hard to teach a kid who has trouble with abstract things the concept of germs and sickness. Earlier this year, he and I got a staph infection. We were alarmed but not freaked out as school nurses and doctors assured us there were more community strains of staph in the last 5 years.

With antibiotics and lotions and creams up noses (yes, up the nose), it went away. Except it didn't. It came back 2 times for me and more times for him. It got to the point where I wouldn't let my skin touch anything, including my son, for several months. I followed him around with alcohol and wipes and bleach.

One day I found him giggling hysterically in the shower and I thought it was cute. Till I realized he was spraying bleach from the bottle I stashed in the shower for each time he was in there...he may have been making himself high off the fumes. So much for good parenting.

The school, the local mental health authority, and we at home all pushed hygiene issues on Aidan. I think it's understandable to get an infection at one time or another, but it didn't make sense to me that with all I was doing (bleaching bedding and clothing and towels every night--discoloring everything I might add), that he was still getting them. It didn't make sense when I was up till 3am many nights scouring countertops and toilet seats and sinks.

So the school embarked on a nose-picking program. Not to teach him to pick his nose (haha) but to stop him. That worked but then he got yet another staph infection. Except this one was so bad that the redness covered his entire thigh and the dr. was recommending hospital entry. That of course put me over the edge. Kind of like the last Thanksgiving where he yelled out at the dinner table "OH NO! Doest your penis hurt?" and tried to knock over the table. It wasn't my family's house, by the way. It turned out he had a yeast infection gone bad and was, yes, passing blood. But couldn't tell us.

With this staph issue, my dr. pulled me aside and said that she thought it was Aidan's poor hygiene while, ahem, pooping, that might be contributing. And lo and behold! It was. Many people forget because I make light of things that my son has moderate-severe autism. He is very bright. But at times we are so used to providing attendant care to him that it just become normal in our eyes. And yes, it is. Aidan may be with us forever, like when he's 40 and I'm 63. You know: normal!

Shane and I commiserated a lot. We talked about the ongoing nature of Aidan's disability and how it was getting worse in many ways, not better.

He said that I was too petite to handle him when he's aggressive, as Aidan is up to my nose now. This is true. He also said this was too much for me to handle on my own. DUH! And so on and so forth.

We spent 4 hours going through old special ed paperwork, another couple researching programs, costs, methods. Then there were the hours it took to schedule. Then more prep. Then more discussion. Then conversations with advocates and friends. Did I mention we had other dr. appointments for the boy during this time?

When we had the IEP meeting, we had to address toileting, independent living skills, and community hygiene skills. I brought up the fact that Aidan stares at toilet paper but won't pull it off the roll. He won't do that unless he has someone standing over him telling him to do it. This is called attendant care. We discussed this and in-home training daily. This means every day a staff person is at my house to go over pooping with Aidan.

His school team also took the meeting as an opportunity to mention that Aidan was NOTICING GIRLS. I told all of them thatI was a Latina mami and I couldn't take that information at that time. They laughed. (But I was dead serious.)

Afterward Shane and I shared dinner and drinks and stared at our beautiful, beautiful boy. By the time it was all over that night, my ex put me to bed and dealt with our kid, showering and getting him to bed, too. And he came before I woke up the next morning to get Aidan out of bed and to get him ready for school. He knew I was at my wit's end. And that I will be forever, really.

I am grateful we still love each other very much, and more importantly,that we both love our only child so much. This kid needs both of us. Badly. Daily. Forever.

Last night I made flowcharts and talked with Aidan's entire team about wiping his butt. And when he cried this morning and yelled "NEED HELP" because he gets confused over putting toothpaste on his toothbrush (it's a different amount everytime, folks!), and when he threw his breakfast down on the ground because the birds were chirping, and so on.

I'm not sure how I thought I would ever divorce autism. Have I mentioned that before?

Wait till our kid starts masturbating in public.

Parents as Equal Partners in IEP Process: Creative Goals

Districts now have canned IEP goals, all numbered for ease within their systems. While I love efficiency in all its forms (ask anyone where you can find me on a Friday night--it's studying organizational systems and looking at a new efficiency system by Franklin Covey or Dave Allen), it doesn't have a place in your child's IEP. If a goal fits your child, that's one thing, but accepting goals just to get everyone out of the IEP meeting in time for their next meeting or lunch...uh-uh.

Simple easy things you can do? Ask for the IEP draft goals in advance so that you have time to digest them. Remember the language of the updated IDEA? Parents are to be "equal partners" in this process. How are you equal in the process without the prior knowledge of the others on your child's committee?

Don't be afraid to ask, don't be afraid to interject, request drafts, ask for a working meeting, a conference, etc. BEFORE you go into your next IEP meeting.

Another thing to think about when we are referring to the IDEA is the emphasis on prepping our children for community and independent living: the most important statute in IDEA is in Section 1400(d): "to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living".

Yes, parents, looking at independent living skills can mean doing so at age 9. Many, many districts only want to provide services and look at IEP goals only for "academic" pursuits but what if your child doesn't know how to interact with peers or cross the street like other children?  Those are goals that can be built into their IEP--after all, how will they ever hold a job or live independently without these skills? Build these into the IEP!

**Sign up for my special ed newsletter and to receive updates on my radio show interviews with special ed  and disability experts. Free giveaways weekly and free chapter of my upcoming "Divorcing Autism" book coming in December: www.specialedforbusyparents.com

 

 

 

 

Parents! Tired? You Should Be: You're Working On Desegregation

I spoke at a conference this weekend and was on an advocacy panel as well. I always, always amazed at the same stories I hear from parents who are from very different schools, towns, and districts. (It's one of the reasons I'm creating those small membership programs, so that I can talk to groups of parents at the same time, all of whom have similar issues.) This weekend, I heard over and over "When will it end?" or "Why does my district do this?" and of course "Isn't what my school doing illegal??".

Yes! It probably is illegal. But my question to parents who are always struggling with educating children in the public school system is what is your end goal? When you think of the fact that we are dealing with a system not really set up to handle children like ours, it makes a lot more sense.

To me, it can be equated to putting a bunch of kids of color into an all-white school--desegregation. JUST BECAUSE they are there doesn't mean racism and inequity cease to exist. Wouldn't teachers and staff still need training and understanding and empathy for the situation? Aren't they still trying to change cultural attitudes? Well, what makes you think it's not the same for a child receiving special ed services? If a general education population has no clue of what it's like for that child (or family) how the hell can we expect that child to get a fair shot at education? Without a lot of work on our end in holding districts accountable and monitoring them?

Tracking on the basis of ability is pervasive, as we all know. I, for one, was one of the children in a large urban area who was tracked through gifted programs. I now have a son who is at the opposite end, tracked through his (dis)ability. It's a constant struggle and to be a thoughtful parent I have to constantly assess my son's level of need and ability and longterm goals for him. And mix that up with my own ideals of community for him.  Now you know what I think about on a daily basis.

Historically, children with disabilities have been left behind, and weren't always even guaranteed an education. Now that we have federal laws to that effect, the work is still not done. Much like parents whose children were desegregation--who knew that it was going to take a lot more than just dumping children into the same classroom, you have to know that it's ongoing work and struggle. Now I hope we all take a moment to respect the great (and ongoing) work of civil rights activists and organizers. Because as parents of children with special needs, you're doing that work, too.

You can do it.

P.S.

Here is a pic from my son's first Halloween ever where he's allowed us to put makeup on him (because of his extreme sensory issues). Okay, so he's 11 and tried to walk into people's houses while trick or treating. And so what if he didn't know what they were saying when some people told him they were out of candy. He didn't cry and got a whole bunch of candy and tolerated the werewolf makeup! We are celebrating progress, people. Always, always celebrate!!!

 

"Can't You Corral Him Better?"

When my son was in the 1^st grade, we bought a house in another area and moved him to a new school. This new school had already heard my reputation (that’s another post), and were forewarned and ready for me. Well, the entire school and administration was, except for the general ed teacher who sat and glared at me during most meetings with her arms crossed.

I will say that the school had a lot to deal with when dealing with me. I was (am) loud and obnoxious, I get angry when things don’t go my way. And, more importantly, I don’t understand how people can sleep at night and not do the right thing for children. I understand compromising, I understand coming to a resolution. But I don’t understand outright hatred of a group of people for being different. Especially since the school we’d transferred to prided itself on being “progressive” and “diverse”. Note my italics. Like much of Austin, it was progressive for SOME but not for all.

Other parents in my son’s class called pretty much daily to complain to the principal that my son was—get ready, parents—“disruptive”, “loud”, “interrupting their children’s learning”. Which of you has heard this? When I heard these things, it was in one ear out the other. I am really self-righteous when I want to be. It was partially about FAPE, but it was also that I pay a lot of damn taxes and I want to see some use out of them. I didn’t care if people had a problem with my kid, he had a right to be there. Period.

Except. I was called one day by a school worker who informed me that my son’s general teacher had gotten angry that my son had disrupted her class and had yelled at her to “corral him better" (because don’t you know that kids with disabilities are like animals?) and then had proceeded to physically push him out of the room and THEN held the door closed while he screamed and pulled on the door to get back in.

So. To clarify: my son was the 6 year old outside crying and pulling on the classroom door to get back in the classroom. While his teacher, his aide, and all the other students are in the classroom on the other side of the door. That he's been pushed out of, that he's now being blocked from.

Everytime I think about this my blood boils. There are many ways to handle a situation like this but for now I want everyone to think about that scene and what caused a grown woman to physically push a child out of her classroom and then stand on the other side, barring him from coming back in. She had all the support in the world, didn't she? My son's aide was in the classroom, I'm an involved, knowledgeable parent.

So what went wrong? What ELSE besides the technical aspects are you, as a parent of a child receiving sped services, supposed to be doing at the school level? And what can you do in a situation like this? (We are *only* discussing the legal ones here, folks--trust me, my hot-blooded nature is just like yours when my child is excluded or hurt.) I also know that many of my clients have dealt with much more severe abuse and neglect and discrimination against their children in the public school setting because I've assisted you when this happened. And I want you to post about it below if you have the time. Other parents need to know.

You have many options as a parent of a child receiving special ed services when the school does something that is harmful to your child. There are many procedural things you can do, and there are many undercover things you can do. Also remember that when I say undercover, I never, ever mean being fake/syrupy-sweet/deceiving (I know WAY too many people like that, and that’s a deceitful way of getting power). I mean undercover in just being smart and having an overall plan for where your child is going.  More on that in a couple of days.

Living With Nuns

So while I was in LA full-time last year I lived with my friend who was a fellow organizer. (Note: This is not about community organizing at all.) What most people also don’t know is that I also lived with nuns. My friend invited me to live with her and take over her apartment when she left, but warned me that it was like a convent. I asked what she meant. Well, it turned out the convent was in Glassell Park, an East LA neighborhood known for its gang violence (and no, that has never bothered me) and it wasn’t a convent but a small apartment complex owned by a nun’s order. Or whatever they call them—yes, I am the worst Catholic in the world, beyond my love of La Virgen—but that’s not really Catholicism anyway. That’s why I am now studying Judaism (sorry Grandma) and why I left my bilingual catechism class at the age of 9 (sorry Mom).

I remember sitting at St. Cecilia’s in Oak Cliff off Davis and reading about the disciples in class, with one page in Spanish and the other in English. And looking around me, and being all sweaty. And then going to the auditorium and my skinny brown legs stuck to the metal folding chairs and I watched priests go up and lift their arms and meanwhile I just looked around for my cousins. At the end I tucked my book in my bag and went home and announced I was not a Catholic and I was not going to make my First Communion. My mom argued with me for a bit then shook her head and was resigned, her daughter was done. (I later explored Jehovah’s Witnesses because I liked all the books and studying they seemed to do. But when I couldn’t wear pants, I stopped exploring them, too.)

I was intrigued when my friend brought up living with nuns, because she said they made no judgment about us and who we had over or what we did. And she said it was a very quiet place and peaceful. And I was there to work, to think, to get my head on straight. And so a happening place was not what I needed. I admit that as a mami, even though I was dealing with my son’s case management on a daily basis, I still felt terrible even having fun away from him, so wanted to be working all the time. (Ah! There’s the Catholic guilt!)

So I accepted. So there I was, living in Glassell Park, with a bunch of nuns, and a young friend of mine. I wish I could say we had all of these enlightening conversations in the middle of the night with wine and the nuns over awesome dinners with these amazing women who have given their lives to spiritual pursuit and who’d been missionaries all over the world. But we didn’t. I was too busy working long hours and readingreadingreading and learning and driving to the Valley.

But in the conversations I had with the nuns about what I was doing at that moment (learning new ideas and thinking about long-term work possibilities, processing my failed marriage and relationships and even my childhood and my son’s lifelong disability and where I needed to go in my life to be healthy and strong for him and what that really meant—and until you’ve done all that emotional work, don’t knock it), it was interesting that they seemed at peace with me and my hectic pace and even the fact that I was there, among them. And they offered me encouragement.

And when I stayed outside very late talking to a new friend (who ended up being homeless), they came out to make sure we were okay and offered us food. And they smiled at me when I got up really early to go run at Griffith Park or around the neighborhood, and told me where I needed to eat in the neighborhood and where to get cheap vegetables.

So yeah. Living with nuns. If I had my son (mi vida, my sweet boy, mijo) with me, I might never have left their midst.

Ipad and Latest Technology for Your Child with Special Needs—Notes & IEP Tips from A Tech Mami

I am a geek when it comes to technology. One of the biggest arguments I had (and continue to have) with my ex-husband is over my telecommunications bills and "needs". I’ve spent a fortune on technology over the last decade, actually more. I had the first smartphones when they came out, when they were one color and the size of a brick. (How I miss you, Kyocera!) I followed the Palm through its many phases and went from that to a Blackberry to an Iphone. And back. I’m a big believer in technology and what it does for our kids.

If you are a parent of a student with a disability, and especially if you have an older child, you probably have been offered some tech device that is not exactly up-to-date. My favorite that I see with clients are the keyboarding devices for kids with bad handwriting, that are one color and can show only a line at a time on the screen. Really.

I have a lot of clients now who are really pushing for the Ipad. Personally, I love love love the Ipad as a device for our kids with autism. And I have seen it in action. That said, I haven’t (yet) gotten one for my son because what we have works just fine (he has an Iphone at home and uses an Ipod Touch at school). I am waiting on the Ipad for a bit, because I am worried about my son breaking it—he’s very hard on his devices and I don’t want to push my budget unnecessarily. That’s right for us, at this time.

Now, I have a lot of clients wanting to know how to GET these things in the classroom. It’s very simple, actually. The best scenario (and I am not using case law here, I am using real things that work): remember that assessments drive EVERYTHING. If you want a certain piece of technology for your child, be prepared to make a case for said technology. That means calling an IEP meeting, asking for an AT eval in the area, and be ready to argue when the school inevitably comes back with the offer of a dinosaur piece of technology for your child. When that’s happened, I’ve argued on behalf of clients by using the idea of social stigmatization and that’s worked quite a bit.

By and far the BEST cases are where you can afford the actual device you want, have already implemented it at home and in the community, and when the AT eval is being done, you also ask that this device be assessed as part of your child’s total use/needs. Then at your IEP meeting you debate the evaluation if necessary to get the district to agree that it’s needed for your child. Simple? No. But it does work.

Now, I can’t guarantee that it will work each and every time. I don’t guarantee anything as I have seen great school districts balk at doing the least for a child and the most backward, ridiculous districts bend over backward to assist a child. However, this is what I’ve seen work the MAJORITY of times with clients. Special ed, like anything, requires a lot of behind-the-scenes planning and work, and coordination with your team and the right mix of personalities at the table and the right people facilitating (hopefully that’s you because you are such an expert by this time).

One more thing. This is important!!  Parents, please use caution on devices and technology and the latest things for your child. If you have a well-meaning family member who wants to purchase a device for your child, if you can afford it, if you are able to get your insurance to cover it, then YES, by all means get one for your kid! But if you can’t, do not stress, worry or inconvenience yourselves.

Remember that parenting a child with a disability is the same as any other thing. It’s a mix of your child’s needs and your own abilities. There are parent of typically –developing kids who SWEAR that private schools, tuitions, name-brand items and things will give their children the best experience and will give their kids a better life. True? I think not. And most especially as someone who believes strongly in imparting my WORKING class values on my child,  I really don’t agree with that type of elitism.

I don’t buy into a one-size-fits-all approach or even a martyr-approach. I HAVE lived on welfare with my child with a disability in order to access services. I also don’t recommend it nor do I recommend stopping your life and going broke over your child’s disability—precisely because of the relationship and mental health strain it causes. And we aren’t even talking money!  But again, those are my needs and they have changed over time as my son has progressed and regressed.

It’s all about reconciling your parental values with your child’s needs and then looking at your (emotional and financial) reality and putting all of that together. That’s a lot, don’t you think? But that’s being a parent—of ANY child.  

So I will go back to my emails with my ex-husband over when—and if—we will purchase an Ipad for our son. And (speaking of personal values) how it can’t be during the next Mercury retrograde period, because it will break. ;)

 

**Not signed up for my special ed email list? You should be! Visit www.gloriaperezwalker.com or www.specialedforbusyparents.com.

Resistance and Parenting a Child With A Disability

My son is a handsome little devil, and not just because he takes after his mami. ;) However, I know that I have a lot of obstacles to deal with in his future. Mainly as a divorced mom, because no matter how amicable my relationship with his father, the truth of the matter is that we are divorced and it’s up to ME as mom to create a family and home life for him. Recent events have reminded me of this even more, and I have remember to resist the many obstacles in his way, now and forever.

What does that really mean?

Well. For someone like me who is 5’ 2 (and ¾!)”, that means acknowledging that I have to be physically strong enough to handle my growing boy who has a tendency to get upset over auditory issues. I would like to pretend that he will be JUST FINE at age 16 or 18 or 25 or 35 but that would be denying reality of my growing boy (who will be a man one day), substandard systems of care for people with disabilities, and the lack of knowledge of their differences by school, medical, legal, and policing systems.

So when a bird chirps in just the right way, when my son has had it up to here with the day, I can expect an outburst. Now, remember, outbursts look different when your son is as tall as you. Despite his sweet nature, my son has already been snickered at while at school, made fun of, even called retarded this year. We live a different life than my friends who stand in line for Harry Potter books or even drop their kids off for soccer practice. For that matter, we live a different life from a person  who can toilet appropriately or answer more than "Yes" to most questions (such as "Is her name McDonald's?" and my son responding with "Yes." No offense to those people who may actually be named McDonalds...).  

There are times jealousy takes over, and it’s usually around holidays or special occasions or missed milestones like birthdays or school dances. And because our reality is different with me as a single mom with this (let’s face it) growing odd boy who giggles and burps and repeats story lines from Snow White and makes his hands dance in the air on his own, well, that can make some occasions difficult, even when surrounded by loving and caring people. Why? Because they aren’t going through it. Who can feel that loss in the same way? Only other parents like me.

On the days when jealousy hasn’t taken over, I am busy (some say obsessed, I don’t disagree) with planning, fighting, worrying, RESISTING the notion that my son will have a life that’s less than worthy. Yes that means really looking at the fact that people with disabilities have a higher than average rate of being abused, living in poverty, and so on and so forth. Or will be arrested for being physical at school, not to mention in public. Like so many of my clients. When I am in that resistance mode, I am thinking of what I need to do to fight those odds. And don’t you have to be strong? Because the battle goes on whether you want it to or not.

To that end, I take a lot of time out (despite my workaholic  ways) to check out of things, to relax, to have a good time, to spend just funny time with my son. I have recently begun forcing myself to work out, quite a bit, for my mental and physical health. I am also exploring a couple of different religions, that are important to me and my values, and my need for community and social justice. This is so that I can be stronger when my son. Because I never know when I will have to be. And yes, the act of physical resistance and straining my body helps a lot these days, and I am truly thinking of my son as I lift weights. He keeps a non-athlete like me going.

There’s also a lot of resistance that goes on in the community organizing world: a lot of reading, a lot of thinking, a lot of discussion. There’s also the act of separating yourself from others who may be doing you and your development harm, there’s an incubation period of growing and reflecting, and getting stronger, to go out and do your real purpose in the world. The Latina Mami group I run is going through that now, and is coming back stronger (and more focused) than before, and the various other orgs I’m part of have done similar things in the past. And I do it individually, for my son, as needed. For the strength to resist a lot of the things in our ways.

So, I have to ask…what are you doing to resist the ugliness and dread about our children and special ed and disability and get stronger and be healthy for your child? I’d love to hear from you! :)