Monday, September 28, 2015

It's hard to tell when special-needs parents are 'drowning'

By Tina Szymczak

In 2010, our darkest times as a family, I began to use the analogy of a swimming pool to describe the difficult parts of our adoption and disability journey. I hope the analogy will strike a chord with other people who struggle to care for another family member, young or old.

When my husband and I decided to pursue adoption, we never expected it to be easy. However, there was no way to know how very hard it would be, until we’d experienced it ourselves. Throughout the adoption process we were told again and again that to bring an older child into our home from the foster care system would be a huge leap of faith.

I now picture the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool. During the home study process and disclosure you get your feet wet. If you want to adopt after that, you better be willing to jump into that pool with your child, whether you know how to swim or not.

When we were given information about our son we did what we thought was due diligence. We asked all the right questions. We jumped in the pool knowing that our son couldn’t swim, but convinced he would learn, with us there with him. We were naïve and thought that if we needed services we’d just advocate for and get them (try not to laugh at me—I’d been working in early intervention for years and should have known better).

After a while we grew tired of holding our son up. We had to face the reality that he wasn’t learning to swim, no matter what we did. We called in more experts. They blew us out of the water when they told us he’d never learn. We grieved and reeled from this new information, but refused to give up.

We called for back-up, but what we got was a bunch of people standing around the pool. They wouldn’t get in with us. Some would sit on the edge and get their feet wet and give us helpful suggestions. That would buoy us for a little while. Most refused to sit. They’d stand in the distance and judge us and occasionally ask us if we were ready to give up and give him back.

People would come and go. Occasionally we were left with no one. A few times some amazing soul would come along and, when no one was looking, jump in the pool and hold up part of my son. Then their boss would come along, or it’d be the end of their work day, and they’d have to get out.

Our son’s diagnoses kept piling up—first Tourette syndrome, ADHD and obsessive compulsive disorder. Then later, autism and sensory-processing disorder. Then the biggest one: bipolar disorder.

After many years our son got bigger and he grew frustrated by his lack of progress.

We no longer cared if he ever swam on his own. We just wanted him to enjoy being in the water again. We knew we needed help to find other ways to accommodate him in the pool.

We looked around. We yelled for help. People came back to the side of the pool, shaking their heads and questioning how we’d ever managed to keep him afloat for so long. We politely but firmly asked for help. They asked if we wanted to give him up, send him back. They wanted us to admit defeat and get out of the pool, leaving him there. That was the only way the system could help us, they said.

We refused. We began splashing and making all kinds of noise. We blew whistles and got the attention of the people in charge. All the while though, I was beginning to drown. All those years of holding my son up had taken their toll: my body was failing.

Some wonderful people jumped in and lovingly took our son, but I was drowning. I couldn’t even begin to tell others what was happening. I later wondered how so many good, well-intentioned people never recognized what was happening to me.

Then I read an article called
Drowning Doesn’t Look Like Drowning.

“The Instinctive Drowning Response—so named by Francesco A. Pia, Ph.D., is what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind.”

Drowning, from the surface, is quiet and undramatic.

Isn't it like that for us as parents? People look at us and see the “together” image we’re trying so hard to portray. We hide our weakness and fear—often times because we know people won’t take us seriously or our child won’t receive something—an intervention or placement—they need. Even as we’re unravelling, sobbing or screaming on the inside, we dress nice, fix our hair, arrive early and sometimes even bring cookies.

We keep on top of referrals that need to be made, reports that need to be sent and IEPs that need to be revised. We deal with meltdowns, illness and messes at home. We cry at night when our children are in bed because during the day we need to hold it together. If we don’t do it, no one will. We find the strength to call for help for our children. But we can’t do the same for ourselves.

We drown silently.

It wasn't until my son went into a therapeutic residential placement that I finally had time to take a step back and sort out what was my need and what his was. I realized that I needed to go back to therapy and I needed to reconnect with my friends that I'd let fall by the wayside. I also needed to take care of myself. I had cancelled and rescheduled appointments for dental, eye care and physicals so many times I'd lost track. Probably the biggest thing I did to stop drowning was to lay it on the table for my spouse so we could figure out who would be responsible for what. He turned out to be a great supporter and partner.

I don’t want to imply that our whole journey has been horrible (I’d jump in the pool again for our son, without hesitation). There have been many more loving, touching, heart-warming times. But I’m writing about the periods that are very difficult. As my friend and fellow parent wrote: “Yes there’s an idealistic tropical paradise pool and there is also a shark scenario, but reality is somewhere inbetween.”

As I assist other families and work in our community to change services, I’ve tried to pinpoint common “drowning” signs in families like ours.

If the parent is avoiding social events, holing up in their house or crying all the time, then you need to gently step in. Listen to them. Be non-judgmental and ask questions, so we know you're listening and interested.

It can be hard to know how people are doing if they don’t share their struggles, but you can always do the following:

Make meals or give gift cards to order food. Don't ask if you can do it. Just do it.

Offer to take the other children when parents have to take their child with a disability to appointments.

See if your employer will let you donate vacation or sick days to your coworker. We tend to use up a lot of days for sick kids, or when our kids are kicked out of school.

Come over and do a couple of loads of laundry.

Drop a card or quick note to let us know you’re thinking of us.

Let us vent about our kid or a particular situation that’s developed. Don't judge us.

Remind us that no one expects us to do it all alone

In addition to teaching people what to look for in parents who are barely treading water, perhaps we could adapt the pool and hire trained lifeguards to get in with us.

You can follow Tina Szymczak at
Spirited Blessings.


Tina, thank you for doing all you do.

to care for yourself and others
and in sharing this through Louise with all of us.

Many blessings,

Tina, thank you for sharing such tender essay. Your analogy is perfect. We have all been in this pool, trying to swim, and hoping our children will swim too. I think your essay should be shared worldwide. Poignant and important.

Thank you so much. I'm really proud of this writing and I'm glad it resonates with people.

Great advice to others; stuff we never ask for. Thank you for sharing this story with us.

Great analogy! It is the best I have seen yet to explain our emotions and challenges as special needs parents!

I often feel like screaming..*doesn't anybody notice???!!" I keep can they not see it?? I use the drowning term also. too neglected my health. 100 lbs and 10 cavities later, I learned the hard way. And that happened in two years! 100 lbs..ugh. This spoke to my soul. Thank you for writing this. It needed to be said and nobody has. We too adopted our child, as a newborn though. Even that wasn't enough. Everyone told us a good home would mitigate his exposures to drugs and alcohol in utero. That was a lie. Love and a good home help, but my son has extreme issues. You don't come out unscathed when you are exposed to methamphetamine daily and God knows how much alcohol and heroin.

Love. You have no idea how much I needed this

Amazing post. Thank you so much for writing this!

Well, after 39 years of holding up our daughter I knew we were close to drowning and we actually started to look into residential placement. But then there was this summer and renal failure and the ICU and now dialysis three times a week and no light at the end of the tunnel. No third transplant, no more 6 days each summer when she went to camp, because of the dialysis there will be no camp, no residential placement (unless we were willing to put her in a nursing home -- AND WE'RE NOT!) and so one help hold her up. I guess there is a time in life when we just need to float and hope we can support her too. BTW by this time in life there aren't really any friends or neighbors left to help.

Thanks for sharing. It puts into words what I feel all special needs parents are going through.

In some ways I am glad the piece resonates with people but on the other hand I hate to think so many people are drowning. Take care of yourselves

I had this moment while reading that you were speaking right to me..... I'm sorry for you, for all of us. Just because it is tough and heartbreaking doesn't mean we love them less or would give them up. It just means it tough and it hurts. I will read this over and over....... Thank you

Tina, this is one of the most beautiful pieces I have ever read. Blunt, courageous and authentic. Much of what you described as those who stood on the side of the pool professionally, happened to those of us with children who are now in their early-mid 20's. We felt so judged by everyone, and most professionals couldn't help us, so we invented everything for our children and our families. The net result though, for most of the families I know, was incredible stress. As parents now, on the leading edge of the great numbers of youth with neurological challenges, we continue to figure it out for our own. The reason I wanted to say this, other than to thank you, is to just say that I now have hope along with the understanding of what it takes to raise our children. Parents of young children have such incredible resources available to them now. They won't have to go through many of the struggles that we had to, and for this I have hope where before I was just exhausted and anxious. I have hope that parents are being able to support each other openly, that families will find solutions instead of despair, and that professionals will continue to develop all the resources they can.

Wow. Thank you. For the first time in 7 years I see something that so completely reflects how I live. That in an of it self is the biggest relief in the world. Thank you for sharing your story and experience.

Marian - Thank you for your kind words. I'd like to think that young families wouldn't have to face these kind of troubles but I just met with a group of parents the other night who have little resources and no help and are very much feeling like they are drowning. I do think there are more professionals (like social workers) available to families but there is still such a stigma. My next article I intend to write is about my time in psychotherapy making myself stronger.

Debbi I am glad you found the post speaking to you.I am happy to share.


Kerryd - I have those exact issues with my youngest son. Like I tell professionals "I highly doubt she was drinking Milk while shooting up". Love does a lot but only so much.

This is really wonderful. I find myself treading water now, but there were a couple years when I was drowning. There are still days like that! Thank you for writing this.

Thank you so much for this article. This describes me some days. I'm going to share this article with a couple of my loved ones.

This was shared by a friend and I am so happy she did. You have taken a very difficult, diverse and complex subject and made it simple, clear, and direct. Thank you. May God bless you with the help, encouragement and friendship your family needs as well

I still have my drowning days but they are farther between. Mostly because I reach out to people. Oh and he's finally on the right medication.

Such a good analogy. We have been in the pool again for a couple of years. Thankfully after more than a year & a second specialist at Camhs they are letting someone jump in with us to do a full assessment! I cried & cried. Didn't realise I was holding so much in! I have a new facebook page called Adoption Rollercoaster. I'm happy for people to like it if they can.

So beautifully written! Is it possible to get a copy emailed to me please? ! email is thanks

Tina.....thank you for this article! I am sitting here sobbing because my daughter struggles with 2 medically fragile children and while I try to help this shows me how much more I should and can do....THANK YOU!

Thank you for your clarity of writing about our journeys. May I share this. I work in a family carer support organisation and would like to share this with providers, colleagues and carers.

Dianeg - shoot me your email and I will send you a version via email. My email is Punya feel free to share - just please make sure my name is credited.

The system is set up to keep us drowning. It took almost *10 years* of red tape, judgement, inadequate services, and being *legally* called a bad parent before our daughter was finally given residential placement. My body ran on stress and adrenaline for so long, that now I'm having a cascade of health problems because my system just doesn't now how to work properly.

Over and over again we had the cognitive dissonance of half the people saying "We don't know how you do it, you're so brave/strong/amazing!" and the other half going "She's your daughter, it's your responsibility to take care of her, not the state's!" We were expected to martyr ourselves to physically and mentally non-functioning over and over again to 'prove' she needed more support 24/7 than 2 adults could provide.

No one treats the people who do elder care like this, no one questions or shames or blames when a caregiver of an elderly or disabled adult reaches out for help, or placement. Why are we parents of special needs children still treated like failures? We'd start protesting, speaking out, and demanding better if we only had the time and energy!

Good message, thank you. Our family took in sisters, 14 and 16, 4 yr ago, as fosters, and now have guardianship. We had no idea how special needs the oldest was. Her needs had not been adequately addressed before. As we began to realize her disabilities, we had testing done, and struggled with the school to try to,get them to recognize her issues. She now is 20, a 5th yr senior with a nominal IEP. The school thinks her problem is slow reading! She has been diagnosed with Asbergers, OCD, depression, cognitive delay, and executive reasoning problems. Yet her school counselor keeps talking with her about going to college! She is so far below grade level in all her subjects, cannot manage her allowance properly, needs help to make sure she manages her meds, cannot be left alone in the kitchen to cook, has anger issues and goes into a rage occasionally, and generally cannot manage her life independently. We have had three other children in the home, one of which has several medical and emotional needs, and yes, we have felt like we were drowning! Now we awe treading water at least till graduation, hoping to get her into a good group home.

Many of the diagnoses that your son has been given are also co-morbid diagnoses of Fetal Alcohol Syndrome. Our son has many of them as well. You may want to look into FASD testing with an FASD specialist.

We already went down the road of possible FASD but he does not fit the criteria. But thanks for mentioning it.

Relationships, hard as this may be to believe, are reciprocal. It is unreasonable to expect others to spontaneously turn up at your house to do your laundry, entertain your other kids, babysit you other kids for free and bring you food or gift cards SIX YEARS into your "crisis".

And I say this as a person whose baby sister was diagnosed with a severe mental illness as a grade schooler (i.e. she was a frequent flyer at the friendly local pediatric psych unit that was her home away from home for most of high school) and whose autistic nephew has been her de facto third child for 3+ years (i.e. he's lived with my family since late 2012).

Missy Manny - point well taken but having been through years of crisis with my son I can honestly say people did those things on my list for us and at the very least they offered to do them. Relationships are reciprocal but who is saying that in minor calms of the storm we aren't giving back to our friendships?

wow, you've been watching 6 years?!?! You make me think of some of my family members that ask "When are you going back to work?" CLUELESS AS HELL. Enjoy your life watching others struggle while you save your 'help' for the right time.

Spot on! Get kicked, bit, punched daily. I have been sleeping only 2-3 hours a night for years. The transfers, bathing, and jumping loopholes in services have put a toll on my body and my spirit.....yet all i have is people who say "i dont know how you do it all". No one that will jump in for a few hours and do it for me though.

Thank you Tina for sharing this article and your feelings. I been struggling for the last few weeks and your analogy of drowning totally describes how I've been feeling, I couldn't put it into words. I've had my periods of drowning before and got through but your article as given me strength that I will again.
It's difficult to admit to people (and yourself) that your drowning as you know you need to be there for child. Thanks again
Debs x

under 18 they usually step up for respite or something to "help".
Over 18 absolutely not.
Why ?
They are an adult.
No help exists.
We are made to feel stupid when we ask for it.
At worst they think you are the one with a disorder.
Anxiety or stubbornness.. the fine line
All the new medication does not do what it says on the tin.
Start again
End up with other special condition like epilepsy. Perhaps
Side effects or other problems ignored.
Start again.
The tests say nothing's wrong with the brain but he's damaged his bones
He's fine, he's my son.
I will cope as I've done from day 1.
20 years have gone in and nothing's changed.
I'm still standing
Everyone's gone
Just me and my son remain.
We don't give up
We need to get up
We need to see what today will bring
It's easy here but simple days turn into the nightmare ones with proffesional opinions who don't know my son stepping into our pool
They will stay at the shallow end teetering ..while we remain in the deep end as before.

We are eveywhere. You see us functioning as we take our children to school, to day programs, to dr appointments. But have you ever seen us in an adult type restaurant? Spa? Movie? No, we are not on vacation, because that is harder work than being at home, where things are where we need them for the next crisis. We won't complain to you. Everything id fine. We don't have the energy to start at the beginnig of the story that's going on right now. We just don't.

I love your piece here. I am speaking at a conference in the next month, using a similar analogy. We spend so much time being the anchor for our families that we often don't even notice we are drowning. Thank you for your insight!

Thanks for sharing your feelings on this issue. We did feel overwhelmed as if we were drowning many times. We were called bad parents and at one point I could walk through the hall of my church bldg and people would literally close the doors to rooms or exit the hall to avoid me. One person even told me I was the latest gossip topic. I felt like a pariah for years. We advocated services for our children resulting in due process, fair hearings, and much more and all the stress and anxiety that comes with all those arenas. Yes, it was our choice to adopt and have children with special needs but we didn't know the health toll or relationship toll it would take from us. After more than a decade of self deterioration I have just learned about self care. (I attended a work shop to work out feelings.) I am doing all I can to take care of myself. We both are. I have gained lots of weight, need medication for health issues and have mysterious aches and pains. I try to go forward each day. We have moved a couple of times and each time I use that opportunity to make a fresh start and keep going forward. Thank you for your article.

Wow this hits the nail on the head so hard it's not even funny. So many times people judge us because "you can't even take care of your own kid" because we finally got to the point where we had to have help with his day to day care. We had done everything on our own for years and our son was finally out of the woods medically but the weight of the emotional disorders was drowning us. My health crashed and burned. No one knows how much those words used to hurt but I have become callous to them I have heard them so much at this point. I am judged as lazy but those that know me know that I used to work multiple jobs at a time and stay up all hours of the night then get up the next morning and go right back to work. But years of living in hospitals and going from specialist to specialist and appointment to appointment while neglecting my health took it's toll. Glad to hear we are not the only ones that know what it feels like to feel like we are drowning in our situation.

Anonymous and Tanya - thanks for sharing. We all need to stick together! Remember to take care of yourselves

Bernie - Very powerful words. Thank you for giving us a glimpse of your life. Hang on! To everyone else - thank you for reaching out and letting me know how this piece has touched you. It really means a lot to me.

I can sooo identify with what you are saying!

I have a special needs daughter who is 29. I totally understand about drowning and being pulled under. I remember hearing stories about 9/11 and the people who stayed behind with someone who was trapped in the buildings, even though they could have escaped. I feel like that. Stay with someone who is trapped or escape to freedom. Of course, I stay with her, even if that means my "freedom" doesn't happen. I give my life to taking care of my daughter. Yes, my health suffers because of it but I am trying to take better care of myself. I need to be healthy to take care of her.

We are living the same life!!
It is even more frustrating when the disability community and their advocacy groups also puts you on the outside. FASD is a developmental disability that, at least in my state, does not get any support. Many adoptive parents are struggling with this complex disorder. The family system becomes so stressed. Thank you

Annonymous - I can only imagine how much 29 years of caretaking takes out of someone. You definitely need to take care of yourself - you deserve it!
Pat - FASD is often overlooked for support - other disabilities have special supports and services available but FASD doesn't garner much support or understanding.