Depression and Parenting Children with Special Needs

Thanks Paul!

I think me, you, and Judy are a little club here!  I am hoping other members come and join the discussions we have.  Anybody out there? 

The main thing about depression is that it is treatable.  It is hard enough to parent a child who has special needs but even harder if you suffer from depression.  So if one can recognize the symptoms (I was slow about this) then you can feel better and enjoy parenting a whole lot more.

Thank you as always for your comments. 

Hey Judy

Thanks for being so honest about your experience.  I remember a conference I went to about autism where the keynote speaker was the lady who wrote, "The Siege."  Judy...if you have not read this book please do...it was the best book I read about parenting a child on the spectrum I have ever read.  Clara Claiborne Park...yes that is her name.  Anyways...she talked about how in helping her special child...there were many times when her other children were "sacrificed."  That time for me of helping my youngest  after the diagnosis...was like a blur.  I tried to include my eldest in things but...you feel so guilty...for everything you don't do for each of your kids...and then also guilty for all the attention the one needs.

This past year I had a heart to heart talk with my eldest son and...asked him point blank...was he jealous...is it too hard to have a brother like Max.  And he told me that he understood...that he wasn't jealous in fact...he was always grateful that he didn't need the attention that Max did.  I was relieved. 

So you really never know how your children are viewing all this.  You are great mom and I bet that Nick's brother does understand far more than you think.

I really commend you for all that you have done and have been through...and you were working too?  I don't know how you did it.

Thank you Judy for talking here.  I really appreciate our discussions.

Thanks, Merely Me - I will definitely look for that book, as I haven't really read a lot on the subject.  I'm glad to be able to share my experiences and hear about those of others because I don't personally know a lot of parents dealing with this - I know their children through my son.  Some don't want to get all that involved since they've moved out of the house, it seems, and others are always there whenever something's going on.  I'm hoping to have lunch again soon with the "Mother Teresa of Marshall Avenue" so I get a lot of stories from her.

Bingo about knowing what not to do, but little guidance or resources on what to do.  I am a parent of a 36 year old daughter with severe epilepsy and a 35 year old son with congential heart disease among a raft of other problems.  Inever would have dreamed back then that I would be writing about them today.  They are miracles - literally. 

Add to these difficulties a father that abandoned us before the kids were 5 without even a conversation with me about it and there you have it.  Thee most difficult thing in my mind has been the lack of resources and even more importantly the way the world views a single mom with kids - especially disabled.  The depression abyss continues to beckon at every turn, but I have learned a few tricks over the years that I'm happy to share.  But right now I'm at work and can't write too much.  So here's what I'm doing right now.  I'm taking a vacation from the stress and all the responsibility without any of the power - because once they turn 18 they can make a myriad of insane decisions about their health and in Canada there isn't anything I can do, except clean up the mess.  So its vacation time.  I'll write more later.

Hi Mama Bear!

Yes indeed we absolutely do want to hear your stories!  I have the utmost respect for you raising your kids alone.  That must have been so difficult. 

Tell us what is currently going on with you and your children.

Hey thanks for the support.  And since you asked here a little overview. First let me clear up that my kids ended up being with their father. After about 2 years as a single parent and constant runs to the hospital and a myriad of financial woes I had a breakdown and tried, unsuccessfully, the suicide route.  I have large gaps of missing memory at that time.  But I do remember a psychiatrist suggesting that my kids go their father who was now living with the woman he was having the affair with while my son was in hospital for his first major repair. In my mind two parental figures are better than one - it was best for my kids given the circumstances.  

I stayed in the picture and was suppose to have co-custody, but over the years their father systematically re-wrote history about facts and events and dubbed me the wicket witch and I was the problem.  He even suggested that it was my fault my kids were born the way they were. A practice he still engages in today, although not as much. There is soooooo much more, but not necessary for this space.

Its hard enough dealing with the physical and psychological handicaps that come with disabilities, but to have a parent systematically lie and bad mouth the other parent because of guilt puts an enormous burden on the disabled child(ren) and the abused parent. To this day I can only hope there is a very special hell for these kinds narcissists.  Actually I really do try live in forgiveness - its always a much better way.

My kids have had an extremely hard time with the extra psychological burden unnecessarily placed on them.  But recently they each said at different times that I am the one who has always and truly been there for them - no matter what and even when they were cruel to me as well.

I have a background in transformational psychotherapy and NLP and I understand and help others plenty as a give back to society.  But when it comes to my own - well its hard to be objective sometimes, but here are my top 10 tips that I've learned along the way.

1. Always take care of yourself first - for all the obvious and intelligent reasons.

2. Don't engage in ongoing pity parties, but do embrace your pain, fear, anger, hurt, concern and write it out of you onto paper or computer. A life worth living is worth recording and the strokes of brilliance that will come to you are incalculable.

3. Find a faith that speaks to you and then you speak to it.

4. All there is is NOW - every morning kiss, afternoon playtime, movie outing, story time, bathtime, etc. is golden - embrace and be in the moments of life.

5. Its useless to ask "why me?".  Its brilliant to ask "how can I?"

6. Wonder Woman and Superman are fictitious, well-organized, askers of help are the real life heroes. Take mental vacations as often as necessary. Make sure everything is taken care of by others and then check out to your favourite activities, solitudes or rejuvenation practices - simple or complex - it doesn't matter to anyone but you.

7. Organize, streamline, simplify - I'll say it again, organize, streamline, simplify.

8. Gather as many like-experienced as you can and friends you can share with. Share with each person a little bit, then rotate, rotate, rotate and journal, journal, journal.

9. Be true to yourself and your child(ren). Don't under nourish your able-bodied kids.

10. Preparing for both living or dying at the same time is the doorway to all the Gods, in all the realms, in the most simplified way imaginable. Embrace and dig dip and ask what is the gem in this - its the most healing and authentic way.

I practice all this things and I've had more than one health care worker or physician tell me how astonished they are that I'm not in an institution someplace drooling in the corner. I believe these 10 tips are the reason why. And its not to say I don't have ongoing challenges, but these approaches are what helps me get through. 

Hope this helps.

Thanks so much for sharing your story, Mama Bear.  You've certainly had some tough challenges and it sounds like you've come through it well, though I'm sure with a battle scar or two!  What is the living situation for your children now?

I must say its nice to converse with someone who is truly interested from a place of knowing - thank you for that.

My daughter has just started using a wheelchair after 5 years of resistance.  She has seizures without an aura whereby she stiffens like a board and falls like a tree so consequently her poor head has had so many injuries I've lost count. If she has one of these falls in her chair then she's be safe.

My son appears to be getting more tired to the point of exhaustion and we talked today about the fact he will need his next heart surgery within the next 6 months according to my lifelong observations. So life, as always is enjoying the moments.

I go through these hills and valleys of my kids treating my in an abusive way to wanting to just hang out with me. Its the kind of roller coaster ride I don't enjoy, but as their parent I feel responsible to them (not for them) to help in whatever way I can, without jeopardizing my mental health.  Consequently I've been on a mental vacation since my daughter's last fall when her girlfriend wouldn't tell me what hospital they were going to and when I finally found out and got there, the doctors were instructed not to let me see her.  Her girlfriend has epilepsy as well so its like the dysfunctional leading the dysfunctional.

I think what is soooooooo difficult when they become adults is that the systems don't seem to care that many people with disabilities, especially those who are cognitively impaired, but not declarable, can make downright stupid decisions about their own healthcare. The systems are more concerned about the legalities that the safety of their patients.  But that is a whole other story and a life time of explaining.

Currently my son lives on his own and seems to be happy where he is and my daughter lives in the same apartment building as me only in her own apartment.  That way we can both experience autonomy while having built in safety when needed for her - which is lots.

I've just written a blog about the tips I wrote here.  If you're interested you can view it at http://www.presentation-management.blogspot.com  I'd love to hear your comments, as I'm thinking of writing more about being a disabled parent.  Many thanks.

And how about you - how long have you been on this site?  Looks like there are 4 of us now who have similar circumstances.  Would love to hear more. 

Hi, again.  I've only been on this site for maybe six months or so, found out about it from Merely Me on Depression Connection.  My circumstances are probably a bit different from yours - for one thing, my husband and I are our son's legal guardians, so we do have a say in his health care decisions, but there will come a day when we'll probably have to sign that over to someone else.  He is living in his own apartment but does get some supervision/help from an organization that provides assistance with independent living skills.  He was also lucky to land a full-time job with the federal government so right now, things are going very well for him.  It's always the social interactions that are the toughest.

I will check out your site when I have a chance.  Thanks again for sharing your experience.  Look forward to hearing more from you.

Thank you Judy - I look forward to that.  And I'm very glad that your son is able to work and be somewhat independent.  Its also good that you and your husband act as a united front - Bravo! 

Hi Mama Bear!

You sure have been through so much in your life!  I have the utmost respect for you and for your courage.  I thank you for sharing your story and your suggestions here for combatting depression.

I would like to cordially invite you over to our Depression site where you can me, Judy, and Paul there as well.  There is wonderful support there for folk who have depression at My Depression Connection.

Thanks again for being a valued member of Health Central.

Many thanks Merely Me - but I'm not depressed.  Oh I suffer from low grade PTSD regarding my daughter's seizures, but not depression.  

As I said earlier (at least I think I did) I'm not prepared to wallow for any length of time nor do I think its a healthy approach to overcoming depression. I wrote a simple manual and do workshops on "I'm the Boss of Me" that is the primer for getting a solid footing on whatever circumstances you are in so you have a place of solid respite and rejuvenation as you go forward, if you think you need to overcome whatever it is you have to overcome.

But what I find with many groups either online or in real life is that people really aren't interested in doing the actual and sometimes hard work of getting a solid mental footing under themselves.  And that leaves me frustrated for a whole host of reasons. I've quit more than one support group for these very reasons. I've discovered that I'm best served by writing about and putting together elements that can help others and which keeps me focused on my own forward momentum instead.

As as much as I appreciate your invitation, I would prefer to stay in this group.  But thanks for asking. 

Hi John

Unfortunately this is very true.  There have been a lot of studies on this particularly for parents who have children with ADHD.  You really have to stop and take the time for yourself and your other family members.  It is so hard but...it is worth it if you want to stay in the ring and have an intact family.

Thank you so much for your comment!

So true John & Merely Me. But I truly believe its about selfishness.  People go into parenthood with the dream of the perfect child, much like a bride is all caught up in the wedding dress more than the meaning of the wedding.  Then when disaster strikes you can't see these people for dust.

I often use to hear people say, when they were pregnant and asked whether they wanted a boy or a girl, "oh we don't care as long as its healthy".  Hmm....so if it isn't are you going to give it back? would be my retort, which you can imagine didn't go over well especially with the kinds of people that run from problems cause it made them think and realize deep down inside they would probably take off or blame or have an affair, etc.

I personally think it should be part of marriage and family studies - but that's me.