A recent conversation I had about autistic kids in school has had me thinking a lot. I think there are a lot of parents out there who believe that parents of autistic and other special needs children think their child’s disability is an excuse for inappropriate behavior. I’m not blaming anyone who thinks this way – it’s just that if you aren’t living it you probably don’t know any better.

The reality of the situation is that the parents are the NUMBER ONE people who do not want the inappropriate things happening. Think you’re upset by a special needs child being disruptive, inappropriate or aggressive? I can guarantee you that the child’s parents are 100 times more upset.

My son has had plenty of issues in school, behavior-wise.

The differences in who we see

When you see my 8 year old with autism, who do you see?

You see a boy who is angry. I see a boy who is confused and scared.

You see a boy who interrupts. I see a boy who is still learning proper communication skills.

You see a boy who is rude. I see a boy who doesn’t understand all social norms.

You see a boy who is reckless. I see a boy who doesn’t always recognize danger.

You see a boy who doesn’t listen the first time. I see a boy who has a slow processing speed and needs more time to catch up.

You see a boy who doesn’t try hard enough. I see a boy who perseveres.

I see a boy. I see an eight year old. I see a baby I carried for nine months. I see a kid who needs extra help. I see a kid who works hard. I see a kid who laughs and loves his family and friends. I see a kid with an inquisitive mind, a heart of gold and a wicked sense of humor. I see a son. I see a brother.

I see a kid.

Disability Rights are Human Rights, Too – But Why Isn’t Anyone Talking About It?

We are living in some times that are scary, disheartening and controversial. The current administration we have in the US is rolling back rights for so many marginalized groups – women, people of color, immigrants, LGBTQ individuals to name a few.

But one good thing that’s come out of these rollbacks is more activity from people who refuse to sit idly by and watch this happen to the country they love. There are discussions, marches, protests, social media campaigns, the #metoo movement, fundraisers, grass roots actions – the list goes on.

But is anyone paying attention to what is happening to another marginalized group? I’m talking individuals with disabilities in this country. As regulations and laws are being changed for the aforementioned groups, they are also being changed for those with disabilities. Except I don’t really know anyone who is really talking about it besides those who have or have a loved one with a disability.

Betsy DeVos, the Secretary of Education, rescinded 72 guidelines that protected students with disabilities in 2017. I heard not a whisper from any of my friends who actively promote equal rights. I shared this info and got almost no response at all. Earlier this year, the House of Representatives passed the ADA Education and Reform Act, H.R. 620, which, according to the ACLU, weakens the Americans with Disabilities Act. It has not yet passed the senate. According to the ACLU’s document titled, “Myths and Truths About the “ADA Education and Reform Act” (H.R. 620)” the act, “upends a key provision of the ADA by preventing people with disabilities from immediately going to court to enforce their rights and to press for timely removal of the barrier that impedes access.” So, in theory, if there’s no way for a person in a wheelchair to enter a building, they could have to wait months or even years to have this problem corrected. Again, I implored my followers to call their senators to urge them to vote no, as I have on other non-disability-related issues, and there was no response.

I am not writing this to make any friends of mine feel guilty. I am writing it because it makes me extremely upset. I am writing for awareness. Why don’t people who fight for equal rights fight for the rights of individuals with disabilities just as hard? Why is this something that people don’t know about and don’t get behind? Why are the rights of individuals with disabilities still so often ignored, even by those who claim to fight for civil rights?

My son, who has a developmental disability, most definitely does not have equal rights, especially when it comes to school. There were many things that happened in the past that shocked and appalled my friends who are civil rights supporters, but no one used their voice to fight for him. No one spoke to the school about what was happening. No one spoke to the school board. No one backed me up publicly, where it mattered, and said this is not okay out loud. And I needed that. We all know the famous quote by Desmond Tutu: “If you are neutral in situations of injustice, you have chosen the side of the oppressor. If an elephant has its foot on the tail of a mouse and you say that you are neutral, the mouse will not appreciate your neutrality.”

That may sound harsh, but it’s true. It seems that the rights of the people with disabilities like my son are easy to ignore and explain away.

I am not perfect. But when my son was diagnosed with autism and I started to see the way the world looked at him and how he was marginalized, I became much more active to support equal rights for all Americans. I realized how important it is for people who are not the minority to stand by the oppressed and say, “we won’t stand for this.”

I want to keep disability rights and what is going on nationally and locally to become an important topic. I want people to become informed. And I want them to fight for kids like mine to have the very best future possible. But even if that doesn’t happen, I’ll continue to fight for the equal rights of all Americans, because that is the right thing to do.

Saying no to mom guilt

Today I posted to my tribe of moms online that my anxiety has been spiraling out of control for the last few days. I made a huge decision this spring and quit my job to focus on N and making sure he has the supports that he needs to grow and be successful. For the last two months I’ve been doing just a little bit of work from home, about 20 hours a month. Up until recently it has worked out well – I was busy with end-of-the-school-year activities and running my kids around. I felt confident in my decision and happy that I had the time and energy to dedicate to these activities that I would have had a hard time with in the past.

This week I’m kind of a mess. It’s now summer, my kids are home and I feel like I don’t know what my next step is in life. I know that the decision I made to resign from my position at work was the right one for N, but I worry about what I am doing to myself. I miss adult interaction. It’s a very lonely place to be and I can’t help feeling like maybe this decision, the decision so crystal clearly right for N, is not right for me. Even thinking this makes me feel overwhelmed by guilt. Shouldn’t I be happy that I’ve made the right decision for my children? Shouldn’t I simply be grateful that I was able to make this change?

But I don’t. Not entirely, at least. I am 38 years old and feel like I have no idea what I am doing with my life.

I asked my group of moms if anyone could relate. And the response I got was, “oh hell YES.”

I read what each of these ladies had to say – some special needs mamas like myself, who could relate in a very similar way, and some mamas who don’t have special needs kids but who feel like they’ve lost a part of themselves as they’ve made their way through this motherhood journey. And every single one of us feels badly – not just about the fact that we’ve lost these parts of ourselves, but that we even acknowledge that we are feeling the way that we do.

Reading these things made me stop and think: this is crazy. And what is crazy is that so many of us moms have to feel guilt about feeling badly about all that we take on and the parts of ourselves that we’ve lost. And that shouldn’t be the case.

Being a mom is freaking hard, and it’s impossible to maintain exactly who you used to be before you were given this important title. Who you become can be a beautiful thing, but it should be okay to feel sad about the parts of yourself that you miss. It should be okay to admit that you mourn those parts and have a hard time accepting that things are different.

Moms, we take on so much of the mental load of parenting and sacrifice so much of ourselves in the process. And although I’m confident that not one of us would change our position we should be able to admit to how we’re feeling and not hide behind the facade of social media showing our perfect lives. Life is messy and complicated and hard to navigate and we should be able to talk about it without shame. So I’m starting here. Say it out loud. Don’t feel ashamed. Our voices together can be loud enough to drown out the guilt.

 

Learning to let go

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Last week when I was in the observation room at N’s speech therapy appointment I noticed this quote on the wall. Upon reading it I immediately welled up with tears.

We have a private pay educational advocate who helps us with school meetings and accommodations. Although I fully believe that we as parents are the very best advocates for our children, we needed help to navigate the special education system and also to have support on our side given the situation at N’s old school. We’ve been working with J for three years and she’s truly a godsend.

J is real with us. She is unequivocally on our side with N’s best interest at heart at all times but she will not just tell me what I want to hear. There are times when I’ve been on the phone with her when I’ve felt like I was talking to my own mother and after we’ve hung up she’s called me back to make sure I’m okay and she didn’t upset me. She always tells me that she isn’t doing her job if she doesn’t tell me the reality of a situation.

One of the most poignant things she’s said to me is that N has to learn to do things on his own. As parents, especially special needs parents, we tend to do things for our children. We tend to step in and help, maybe because we are protective, maybe because we worry they can’t do it, maybe because we fear the reaction others will have without us there, maybe a combination of all of these things and more. J told me that her own daughter, who had special needs, told her once, “you can just do it because you do it better.” At that moment she realized that she NEEDED to let her daughter figure out that she CAN do it on her own.

I’ve started to take this approach with N. It’s not easy, but I’m trying. I am always there, always ready to step in if I need to, always worrying, but willing to show him that he’s capable. That he can do things on his own. He may not do it right the first time, or the first 10 times, but he’ll learn. He’ll become capable. He’ll see that mom is always by his side, but that she doesn’t have to do everything for him. That he can be independent and successful. Of course, he’ll always need me. At 38 years old I still “need” my own mother sometimes. But he’ll build confidence in himself and his abilities, and that is so important. And I’ll be his biggest cheerleader, never far away, always within reach, always supporting, always loving, always being the best mama I can be.

Until you walk a mile in her shoes…

Today N came out of school upset and told me that a classmate had called me, his mama, an idiot, “the B word” and one other name. I asked Nicholas what happened and told him I wasn’t worried about the boy calling me names, but I knew that it upset him. He told me this boy punched him today after calling names. He was visibly upset and not sure why all of this transpired.

Now, here I could have gotten angry. I could have called the school and ranted. I could have told Nicholas that this boy was no good and to stay away from him. But I didn’t.

I reminded N about when he’s done things that weren’t kind to others at school. I asked him if he thought this boy could be having a hard time with some things, similar to how N had a hard time in the past. He thought about it and said yes. Then he told me he thought maybe the school social worker could teach the boy the Zones of Regulation and the boy could stop getting in trouble and have good days.

This is how we do things in our house. Because I’ve been there and know that behavior is communication and that something could be going on with this boy. That he probably needs friends more than ever at this point. That he’s not a bad kid, but a kid having a hard time.

I’ve seen this boy’s mom pick him up and she always seems so caring and sweet. I see her put her arm around him and pull him close. That’s her baby boy. Her world. I feel for that mom. It’s not easy. We all do our best. We are all works in progress.

Kindness goes so far. Judgement gets you nowhere. I don’t know their story, but I will not judge that boy based on a hard day. I will not judge that mom based on her son having some difficulties in school. And I will reach out to her and see if our boys can play. Because that is how we build community, how we help our children to resolve conflicts, how we teach them compassion. It DOES take a village, and I’ll be an example to my child because he’ll learn not just from what I say, but what I do.

Dear Mom of a special needs child with behavior challenges

Dear Mamas,

I know your struggles. I have a sweet boy who is my world who is also developmentally delayed in social, emotional and behavioral areas. I know how challenging this situation can be. And I also know that the judgment, gossip and lack of understanding puts an added burden on you. And it’s taxing. It’s draining.

As a special needs parent, we have so much on our shoulders. We drive to endless therapy appointments. We keep our patience even when we want to scream. We plan, plan, plan instead of going with the flow. It’s exhausting, but we do it to keep our lives as calm and steady as we can. We do it so our children can be their very best selves, so they can gain skills and feel secure and comfortable.

We advocate tirelessly at school, repeatedly explaining to anyone and everyone about your child’s challenges, only to do it again when staff changes. We become professional researchers, making sure we know all the info about special education laws, IDEA, Section 504 of the ADA, etc. We hire advocates, if we’re lucky enough to afford them, so we have someone to back us up so we won’t get steamrolled when we sit in a meeting with eight or ten school representatives in the room.

Our phones autocorrect the word “it” to “OT” or “but” to “BIP” or “see” to “SSW” and we know more about executive functioning and emotional regulation than any of our other friends. We sympathize with parents we see out an about struggling with a child’s behavior because we KNOW. We know that everyone has a bad day and we know better than to judge a person solely based on their worst moment.

We take on a lot. And on top of this we have the burden of the other adults who just. don’t. understand. Who don’t WANT to understand. Who thrive on gossip and for some reason find it acceptable to talk about a child, a CHILD, and a special needs child at that. They talk about our children being badly behaved and label them as having thing like “anger issues” and it shows their ignorance.

There’s so much out there that tells us as special needs parents that we shouldn’t worry about this gossip and the ignorant people. Our friends and family members tell us this sometimes, too. And I try not to, I really do, but if you’ve read this blog before you know that this is an issue that just makes my stomach turn. It’s human nature to feel protective of your baby, and I can’t help but wonder why the most vulnerable of our children, our special needs babies, are the ones who seem to be treated so horribly and inappropriately by adults?

It’s a horrible thing, and I want you to know that I feel for you. When you’re working so hard and you have to face the cruel judgement from other adults about your child and your parenting it can feel so unfair. And it is unfair.

But you, sweet mama, know your truth. You know how hard you work. You know how hard your child works. And spending energy on the people who don’t want to see that is a waste of time.

I once had a parent of a child who had an issue with my little guy who I tried to reach out to so we could resolve things and she was just completely unresponsive. She wouldn’t answer emails and when I gave her my phone number she didn’t reciprocate and didn’t contact me. But she did talk to anyone else who wasn’t me about my child and said horrible things. And yes, it got back to me because people love good gossip. And I realized at that point that some people would rather have something to gossip about than to take the time to understand the social and emotional challenges that sometimes come with special needs children. That type of person is a waste of your time and energy.

YOU are not that person. YOU get it. YOU are compassionate, understanding and inclusive. YOU can make a difference. YOU can support a mama who needs it and withhold judgement. Your experience makes you not just an advocate for special needs children, but also special needs parents.

It’s easier said than done, but focus on you and your sweet child. Support other parents who need it. Talk to the people who do care, who do want to understand, and educate them. Share the information so that more parents of typical kids will start to understand and become advocates themselves.

You’ll never rid yourself of the judgers, but remember that no one ever regretted being kind. So save that energy you need for your child and take care of yourself. Take care of another mama who needs it. You’re doing an amazing job and the people who know that are the people who matter.

And you’re not alone.

xo, Amanda

My thoughts on that viral video

There is a video that has been circulating on social media from a mother of a non-verbal child with autism. This mother emotionally describes the moment when she realizes that her expectations for her son’s life have changed and she now worries about things like what will happen to her child when she is gone. There has been support for her but also a lot of backlash. People have been chastising her for “grieving” her child’s autism.

Here’s the thing – I don’t ever say that I want someone to feel bad for ME because my child has autism. No. It is a huge part of who he is and the fact is he would not be the same person if he wasn’t autistic. I don’t say I hate autism. But I would be lying if I said that I don’t have moments where my life seems so out of control and insurmountable that my heart begins to race.

I don’t hate autism. I love my child for who he is. But I do hate that it makes life so hard for him at times. I hate that the world is not designed to accommodate people like him. I hate that because he has “high functioning” autism that some people believe that this makes things easier for him. I hate that people become surprised when he has challenging behaviors because he seems so “normal” (and don’t get me started on the word “normal”) much of the time. I hate that the public education system in our county is still not designed to properly accommodate children like him when the autism rates are climbing higher and higher. I hate the lack of understanding. I hate the lack of compassion. I hate the lack of awareness. I hate that some people think that my child just lacks discipline and boundaries. I hate the looks of pity I get at school if I go to tend to my son when he’s having a rough day. I don’t need pity and neither does he. I hate that he’s expected to suck it up and just deal with his very real disability. Society doesn’t expect a child in a wheelchair to suck it up and just learn to navigate stairs and narrow doorways but it expects my child to just deal with the very real challenges he faces as a direct result of his disability without question. I hate that the world doesn’t always make sense to him. I hate that he cries when I come to pick him up early when school says he has to go home and tells me things like, “what do I have to be proud of?” (Everything, my sweetest boy, EVERYTHING) I hate that the world won’t change because that is the ONLY way that he can truly change and adapt. So much is on the shoulders of this tiny eight year old boy. It just isn’t fair.

And yes, I hate that moms like the mother of the non-verbal autistic child in that viral video are expected by so many to just feel blessed and grateful and like a warrior. To try to act like the worries of parenting an autistic child shouldn’t be talked about is so outrageous. Have you heard moms of neurotypical children cry and worry about their kids’ future? Whether it be their grades, ability to go to college, friendships, social struggles, sports performance, you name it – have you? Of course you have. And those parents are allowed to express their fears for the future and vent but somehow parents of autistic children are not? They aren’t allowed to worry for the future of their kids, too? Well I’m sorry, but that is not okay. We are moms like any other moms and we worry about our kids. We love them fiercely and don’t always believe in rainbows and sunshine even if we are supposed to be “warriors”. So let’s give that mom a break and be kind to each other. Let’s let every mom worry out loud sometimes. Because we all know the saying about having a child is like walking around with your heart outside of your body every day – and that’s true for every mom of every child, autistic or not.

IEPs and feeling like Wonder Woman

We had N’s annual IEP meeting today and after a night of editing the draft of the PLAAFP statement, gathering documents and making notes for the meeting I went in today feeling nervous but prepared.

Earlier this month I attended a workshop through the Michigan Alliance for Families that gave a detailed look at the IEP process and a lesson on how to be a better parent advocate. This gave me so much confidence as I headed into the meeting.

My amazing educational advocate attended as well and although she said I didn’t need her I was so glad she was there. I learn so much from her that I can use to apply in the future.

The meeting was nearly 2.5 hours long but it was productive and I feel like N is going to be set up better for success moving forward.

Until next year…

Sunday Nights

It’s Sunday night. I am sitting in my quiet living room alone. Finally. No one needs anything from me. I have my feet up, a blanket over me and a book in my lap.

I should feel perfect. But this is when the anxiety hits.

How will N do at school tomorrow?

Will they call me?

If he has trouble, will they know what to do?

Will they respond with compassion?

Will they remember everything I’ve told them?

Will he feel happy?

Will he play with friends?

Will he feel nervous or anxious?

Will I jump every time my phone rings?

Will I count the minutes until I know he’s made it well past recess and lunch and that things will probably be okay?

Will I get a chance to review the PLAAFP for his IEP on Tuesday? (I should do that tonight, but my brain can’t take that right now)

Will I ever not feel this worry again?

Is that him I hear upstairs still awake at 9:20pm?

Are his nerves keeping him awake?

Will he sleep tonight?

Will I sleep tonight?

Will I be able to concentrate at work tomorrow?

Will he be okay?

I have to remember to breathe. I have to remember that the anxiety makes it worse. I have to relax.

In the morning I will go through the routine and he’ll never, ever know that I worry.

I am his strong, dependable mama.

The last time he called me from school to tell me he was having a bad day because they changed all the seats in his classroom, I reminded him of all the people there who care about him and can help him. Who understand him. “Not as good as you, Mommy.”

There’s no replacement for your mama. It’s why I shoulder all the worry. But that’s okay. It’s my honor to do that for him.