Is there a self-pity stage in accepting a dx?

august06mom

DS2 was dxed pdd nos about six months ago and it was changed to HF ASD last week. I'm having a hard time letting go of my anger and feeling sorry for myself, which, frankly, I'm a little disgusted with. I know things could be much worse but I'm having trouble moving past it. I don't have anyone to talk to about this, and finding time for me to see a therapist is a big joke -- ain't gonna happen.

Anyone deal with this?

ToastieSimons

Yep. And grief isn't this straight line road from start to finish. I can't tell you how many times I was starting to get through and would fall back into the why me and this bites and what did I do to deserve this. It took me about 1.5 yrs to finally get through the grief on my own. A lot of it was finally relieved when we got a genetic diagnosis and I could signally stop blaming myself for what if I did something wrong and caused this Eta: I HATE telling myself that it could be so much worse. You're trivializing what you're going through. What you're dealing with is hard. At times it even sucks. Admit it, accept it. The first part you can do is own up to it. When I feel that way instead of heading to the negative side of well it could be a lot worse, why am I complaining? I try to say to myself, this is hard and very scary. I am upset, hurt, angry, etc. now what am I going to do with that? I can choose to continue feeling this way or I can own it, accept it and try to find the other side. The milestones my child has hit. How I feel when he surprises me, how elated I was to have a baby. He is still the child I carried for 9 months I just have to find it in him sometimes.

august06mom

ToastieSimons said:

Yep. And grief isn't this straight line road from start to finish. I can't tell you how many times I was starting to get through and would fall back into the why me and this bites and what did I do to deserve this.
It took me about 1.5 yrs to finally get through the grief on my own. A lot of it was finally relieved when we got a genetic diagnosis and I could signally stop blaming myself for what if I did something wrong and caused this

Thank you for responding. It helps to know I'm not the only one.

ToastieSimons

I added to my response, sorry the iPad is a pain to respond from

Micelle78

I agree with Toastie.  I thought I was getting there with accepting it. I started to not be critical of myself or being upset at the situation.  However, feelings really come in cycles.  I think I have the seven stages of grief on repeat.

Things have been hard for me recently because ----on top of a mixed receptive expressive language delay, sensory processing disorder (for instance, refused to feed self with a spoon until 2.5 because he didn't want to touch it- not because he couldn't do it and will only eat a very very narrow list of foods, does not like hats or funny fabrics etc) is no where close to potty training and has some fine motor delays---

we found out my son is color blind as well as extremely far-sided.  He has to wear glasses now and may also need vision therapy.  Seriously glasses are the least of his problems but seeing him in them made the "invisible" diagnosis, that is all his other problems, seem to scream for attention since people will see the glasses and think--what else is wrong with him??

 I know it sounds stupid and incredibly vain but I liked thinking if he wasn't in a direct conversation with someone, they may not notice his differences.  It hurt so bad, but its been a month now and I am dealing much better.  Its just one more difficult thing to go through. You need to know you are definitely not alone.  Also, for every person that posts on here-- there is probably 25 lurkers that are silently reading these posts and finding comfort in them. 

Princess_Lily

Denial, Anger, Bargaining, Depression and Acceptance while are stages of loss and grief are also stages that parents experience when they may be facing a special needs dx for their child. No one hopes/wishes for their children to face difficulties/challanges when they are born, and then when parents have to face the reality that their childs' journey in life may not be a smooth one, we grieve for the perfect journey that we thought they'd have. 

I think this is quite common to go through these stages, and sometimes always not in the same order, and not every day.

Allow yourself respite care, whatever it is (time with friends, a shopping day).  Try not to feel guilty.

Allow yourself to vent - allow yourself to grieve, try to do it without isolating yourself from others.  Sometimes there are support groups for parents who are walking in similar shoes as you, maybe not the exact same.

Maybe also (if needed) find a family therapist who will help you and your family cope with the difficulties and struggles that you may be facing or facing in the future.

For myself, knowledge is power, and I have tried to educate myself as much as possible, so to not feel so out of control. 

funchicken

-auntie- said:

@august06mom

Do consider seeing someone for help. I know it's really, really hard to squeeze in yet another appointment and squeeze out another co-pay- but you are worth it. 

There's an old saying in Autismworld stolen from the airline safety briefing- you need to put on your own oxygen mask before you can assist others.

If nothing else, you will be a more effective parent and advocate if you are in the best place you can be emotionally. A lot of moms on spectrum need short term therapy and/or medication. It can make a huge difference in your outlet and quality of life. 

Ditto this. I started seeing a therapist shortly after DD's initial OT eval and during our 9 month wait to see a developmental pedi. I went weekly for a few weeks just to have a chance to talk it out with someone and process it all. Now I go once a month. Just make one appointment. If you like the person, try to find a way to fit in another appointment even if it's a few weeks off. It helps me to know that I scheduled that time for myself.

Assembly_Reqd

I feel this way all the time. i think that is why I want to have another child. I want these "poor me" feelings to go away. I want my typical expectations back, dammit. Like others said, it is totally a circular cycle. You start getting to a place of acceptance and feel you're on the right path and some fuckin' doctor's appointment or assessment blows that all to shit and you have to start all over again.

august06mom

Thank you everyone. You are all so great.

typeset

Absolutely. I still get bitter from time to time as he gets older and we're just not able to do what other kids his age take to so naturally. 

thefuturemrskudla

I have felt this, too. It may sound strange, but what I have done everytime I start to think "why me?" is say, "why not me?" It's kind of a cognitive behavioral approach to help change my perspective.

CaptainSerious

Assembly_Reqd said:

You start getting to a place of acceptance and feel you're on the right path and some fuckin' doctor's appointment or assessment blows that all to shit and you have to start all over again.

Oh, yes. I started talking about not taking the kids to any more doctors' appointments, because then we'd stop getting new diagnoses. I grieve repeatedly, but each time it's more familiar and often it's less devastating than the time before.