Non verbal, Non speaking, unable to advocate for yourself, it makes you extra vulnerable. There are so many layers to parenting a child with autism. Having a child who is non verbal and has substantial difficulties communicating adds another layer to navigate.
I don’t think many outside of our world can understand the constant battle, and how profoundly it affects every aspect of our life,and even more so our Child’s life.
The lack of understanding on how different this looks from one individual or another, puts us on a repetitive loop of explaining our child’s situation. It is frustrating as you can imagine. I am not referring to the older women at the park,or to the young mom who had never encountered someone who is non verbal.
I am referring to the very institutions intended to help us. Case managers , doctors, insurance workers, the list is never ending.
It is a constant balance of advocating and accepting. It is such a big job when you are your child’s voice,It is exhausting. When everything falls on you, the decisions, the guilt,the energy to push,the sheer exhaustion from never getting it all down.
This life affects your mental health. It takes a hit. It affects your ability to stay on task, to remember to make the phone calls,the appointments ( and go to them),to keep moving ahead no matter what.
It’s leads to feeling inadequate at times. You have this enormous responsibility to be your child’s voice, to fight, to advocate. Of course you love your child and would do anything to help them, it just feels at times that it is an uphill battle. It feels like a lot to take on with such little support and understanding.
It’s just such a complicated layer to navigate and to explain.
Alyssa ran out of her medication, partly due to me but partly a glitch with the insurance. A medicine used to treat seizures, that she had been on a long time. All happening on a Friday. I had to call so many people. I was literally on two phones at once. It took hours to navigate and lots of tears.
It would be dangerous for anyone to go off this medicine abruptly,but someone who can not communicate, or explain anything going on with their body is even more problematic. It put me in a panic just to think about it.
When I called masshealth to try expedite it,they informed me they could only speak to her. I told them she doesn’t speak and we are her guardians,she said it doesn’t matter she only talk to her. I was irate as I know this is not correct,but sometimes you hit a wall.
At this very moment I felt the weight of the world. The fear that comes along with being responsible for someone who can’t communicate and how truly vulnerable that makes her.
Of course I was not giving up,nor will I ever. Realizing that it was a three day weekend and that added an extra day without medicine put me into a tailspin.
TIme was ticking and I could almost hear it as the 4 O’clock hour was passing by and we all know how everything shuts down at five on a Friday. it was able to get it temporarily resolved at the last minute.
I will always fight for her as she deserves nothing less. #autism #advocate #nonverbal #nonspeaking
I am proud to Announce The Table For five podcast that me and four other Autism mamas host,have found someone who shares our mission to partner with us.
Lindsay Rosenthal is a behavioral analyst who works with children on the autism spectrum as well as other developmental disabilities. She saw the difficulties the caregivers moms specifically have providing care to their children and lack of support and understanding that there is. We at the table of five know first hand now emotionally exhausting and isolating that can be.
Lindsay had a vision to find a way to give support to lessen the isolation and to make moms feel “pampered”.
Moms in a general and especially moms of children with high needs take care of everyone and put themselves last. The grueling therapy schedules and consuming care that our children require make it card fit in self care.
She started a subscription box called The Pampered Parent,designed for moms of children with special needs
A “featured item” that’s from a company that is run by and/or employs individuals with special needs
Self-care products like motivational books and interactive journals, positive affirmation items, relaxing bath and beauty products, and delicious edible treats
An exclusive item (t-shirt, tote, mug, or tumbler) with a special saying or quote
Each month, our box has a different motivational theme that is carefully thought out and tied together.
A part of the subscription contains access to an online community filled with people who understand.
The best part is that she employs special needs adults as part of her box. The adult disabled community is often forgotten. To find someone who recognizes that and empowered to find a way to Spotlight that community is beyond amazing.
You can sign up for one box,or a monthly subscription. You can also gift a box to someone in your life that is in need of support.
Moms always have a tremendous pressure on them. It is challenging balancing parenting,marriage, maintaining some kind of order,work if you are able to and then you add the pressures off keeping up with the other ‘moms’. The moms that post on Pinterest and Facebook who live seemingly perfect lives,have perfect clean houses, and who seem to sail through momming effortlessly. It is no wonder we feel like we are struggling.
Every mom feels overwhelmed and under appreciated at times.
When you parent a child with high needs,that pressure intensifies. When you have a child who requires extra care to function successfully in life, which many times you are unable to provide yourself the feelings of inadequacy doubles.
When it is on you to make sure your child is given their basic rights and that is a constant uphill Battle. When you are battling with schools,insurance companies, being denied services, put in endless wait lists to try to ensure your child had the best chance,or any chance of success.
When the days are so long and you are in the thick of aggression, self injury. Eloping, meltdowns and you don’t know if you are going to physically and mentally make it through another day, and you look at your child that you love so much and you are filled with immense guilt that could eat you alive. You just want your child to be ok, and for you to be Ok. When that doesn’t feel possible it begins to take a toll.
When all this responsibility falls on you, because you are the mom. The weight at times becomes unbearable. The constant feeling of failure weighs so heavy on you heart.
When you have a child with a disability you become more than a mom, you become a caregiver.
Of course you don’t feel that way, you are the mom If not you, then who? It’s your instinct to do whatever it’s takes to help your child. To be whatever you need to be to be. You love your child and are fiercely protective.
The reason it is so overwhelming is because you are wearing too many hats, there are too many plates spinning. You become way more than a mom. You are a mom, a therapist, an advocate,a case manager, an educator the list goes on with the more needs your child has.
Many of us are not equipped or qualified for these jobs. You can not be all these people at once. That is why we struggle so much and feel we aren’t doing enough. We need help. Unfortunately a lot of times there is no help available and we have no choice but to step into these roles. Even when you can access help it becomes another job getting them to and from.
It leaves you exhausted, mentally drained and feeling bad about yourself as a mom.
You are more than a mom , you are more than a caregiver.
You are a beautiful person and the reason you feel this way is because you are an amazing mom who has taken on too many roles. You can’t possibly be successful in all of them.
You need take time to to just love your baby, to smile, to feel the sun.
You can lose your ability to cope and even to care
It is can push you to the point that you can barely get out of bed , or shower. It can literally paralyze you. Except when your a mom, especially a mom to a child with special needs you don’t have that luxury. You have to get up and at least do the bare minimum to keep everyone safe and cared for.
It takes all your mental energy. At times you don’t even know why you feel this way. You become numb and everything feels so heavy. You walk through the motions of your day with no feeling. Sometimes you don’t even realize what an unhealthy place you are in. You will Silently beg for something to make it stop. It is hell On Earth
Things feel so big . You feel so weak so tired, mentally tired, and you feel so powerless to fight it, to make it stop. You feel like you are losing control and you begin lose interest in the things you love, that being you joy.
Everyone’s bottom feels different. There comes a point where you can’t do it alone , you need help to pull you out of the darkness.
Asking for help can be so hard, it can feel so defeating.
We have this unrealistic pressure on us to be strong, to keep up. Asking for help doesn’t make you weak it actually takes incredible strength.
It is difficult to put your vulnerabilities out there, to risk rejection, judgement , and feelings of inadequacy. It takes a lot to have the courage to put aside your self doubt and seek help.
Make the phone call, say it out loud and give yourself grace. Always remember how important you are . You matter
We all need a little help sometimes and that’s okay. We all need love and to allow ourselves to heal. Admitting that and letting out guard down is what takes the most strength.
I am going to a dark place and I can feel it happening and feel powerless to stop it
I am tired of being knocked down by autism
Not autism itself but by the effects of it
When I feel like I have accepted it . Moved on
Made the best of it
But it still can knock me down when I least expect it .
I thought I was used to it ,that I forgot about them
The heavy , the why and the unfairness of it all
It always comes back to haunt you
I know brighter days are ahead but it’s hard to see
Through the tears , the frustration , the exhaustion
I’m battling my own mental health and I’m weary
The joy , the triumphs and the breakthroughs usually over shadow the rest
But they are always there lurking underneath , usually pushed to the darkest corners of your mind far away from your heart. Until they come to the surface sometimes with no warning and take on a life of their own.
It crushes your heart and consumes your every thought,
When the darkness stares you in the face
Why does my baby have to suffer like this
Why is she put in such a vulnerable position
Where things can happen and you ‘ll never know
Why can’t things be better
Where we live in a world will people care just as much about disabled adults as they do disabled children and in turn just as much about disabled children as typical children
Where it matters what happens to them and who is taking care of them
We want to protect our children always but we can’t be with them every waking hour and even if we could we won’t live forever
What will happen when I’m gone
But then I walk in and she is sitting there with her bright eyes ,so beautiful I can just get lost in them, my heart clutches as I lean in for a hug and she squeezes me back, something she has only done in recent years.
I watch her as she goes in her room and comes out with her tiger , she is having him hold a dinosaur with a tutu and she is laughing as she is showing us. That laugh is medicine for my soul.
She is so happy, so unaffected by the sadness of the world
One of the biggest blessings of her autism. The worries of tomorrow slowly slip away.
My daughter is a gem, precious and full of beauty. I am forever grateful to have her as my daughter , she shows me the light through her eyes and makes me appreciate it, feel it
She will always be my reason to keep fighting , for her and others like her. My motivation to wipe my tears and hope for a better tomorrow. My love for her will always trump everything else and give me the strength to stand tall beside her.
I have said those words to myself as well as had others say them to me.
It does little to bring you comfort In your darkest corner of your mind.
All it really does is make you feel guilty and believe me we feel an insurmountable amount of guilt already. The guilt can be even worse than the grief.
I could tell you all about my grief , the pain and heartbreak I had realizing my little girl was disabled . The way it shattered my heart and took my breath away . The stabbing pain , the physical pain when I would look at her and want to help her but I had no idea how to.
That helpless feeling as a mother is the worst feeling in the world.
I see the confusion in your eyes when I tell you how sad I am. I hear the tone you use when you say it’s not that bad. I see the words plastered all over the internet, judging, minimizing , and questioning our hurt.
I am going to tell you the pain you feel as a special needs mom is real , the grief is as real as anyone else’s.
We get the added bonus of being shamed and feeling guilty on top of our world being tipped upside down and twisted inside out.
Yes we know our child is not sick , but they are not without pain , we are not without pain.
Yes we have the blessing of having our child in front of us and we are grateful , but we are not without loss.
I am not telling you this for my benefit , but for the benefit of all the moms going through it . I have walked my path and lived the sadness and trudged uphill through all the hard , at times thinking I couldn’t take one more step.
I did it though , at times I had my daughter on my back feeling the weight of the world , and other times she would pull me with her smile , her light and that was enough to keep me pushing and in time the weight began to lift.
There are 5 stages of grief and we go through them all . Everyone single one of them.
First there is denial, this one is has a lot of impact that catches up with us later.
This is where we can not wrap our head around a diagnosis. We come up with every excuse in the book and even find some signs endearing .
We begin to see red flags and we search for other reasons but in our heart we have a sinking feeling. We allow others to convince us everything okay because we want so badly for it to be true . Our love for our child puts up a protective wall, but it will eventually come crashing down .
Then we have anger. We are so angry . Why did this happen to our child? It is not fair . It feels so unjust . Things seem so much easier for every other child we see , every other parent -Our sister , our neighbor and our best friend .
You try to be happy for others but it is so hard , and it hurts so so much !
We are mad at God , the doctor , and mostly ourselves and for no good reason their is no rational thought in this stage,
Next comes the bargaining stage , taking the anger and turning ourselves into research specialists. Google becomes your best friend and your worst enemy . You will find “all the things “ and you will start ordering and trying everything .
You are convinced you will find that one thing that is going to fix your child. You are sure that if they can just learn to talk they will be fine . Maybe it’s not autism and if it is maybe just maybe it’s mild , or it will be if you just find the one thing that will help . This is in conjunction with all the therapy , and educational services they are already receiving .
You beg and plead with the universe , God or whoever you think is listening to please let something work . There is a little bit of denial still here in this stage .
Then comes the sadness . You begin to realize that this isn’t going away , it’s here to stay . It’s a part of your life and a part of your child forever . It begins to sink in and you become overwhelmed with emotion .
The whys come back . Why your perfect , beautiful child , why are they inflicted with this . It feels like every other child is surpassing yours and experiencing a typical childhood . You are sitting at iep meetings hearing how behind your child is and all the things they will never be able to do . It is crushing.
You lose your fight. Your dreams for your child slowly slipping away as you realize this is forever.
You will begin to move into acceptance. You will feel a huge weight lifted off you when you move into this stage.
You begin to see your child in a different light . You relish in their accomplishments and celebrate them. You see the light at the end of the tunnel .
You realize that this is your life and your child’s life . You take the ups with the downs . You become stronger . Your fight comes back . You fight for different things now . You fight for communication instead of words , you fight for progress , you fight for joy . You let go of the why and move forward with the here and now .
Mamas who are in the grief stage, it is okay . You need to recognize your feelings to own them . It is unhealthy to keep them bottled up . It will only lead to guilt and shame. It is your truth .
Do not let someone who has not walked a day in your shoes tell you any different . It is perfectly natural to feel this.
I am not going to lie, it is not always an easy life . You will grow thick skin and you become a mama bear like no other , and you will walk over glass to protect your child . You will be their voice .
Acceptance is not a forever stage , you go back and forth . You will go back into sadness at different times and that is ok . You will take a day or an hour to cry and then dust yourself off and come back .
You will experience more joy than you ever imagined. You will have an overwhelming sense of pride and be in awe of so many barriers your child will break . You will find your people .
Although this is a hard life it is not a sad life .
To People outside of our world and to well meaning friends and family , the grief is real and it’s hard .
Do not try to tell us any different . Please understand this does not mean we do not love our child . We love them fiercely and it is because we love them so much that we don’t want them to not have to walk such a difficult path but we learn to hold their hand and walk along with them..
Be kind and be compassionate , and if you don’t know what to say don’t say anything sometimes just being there is enough .