Stages of grief?

[Anonymous]

Could some of you share your experiences learning to cope with the reality that you have a special needs child? I'm new to this and going through a lot of the denial, anger, depresssion, etc. Wondering what your experience was and how you learned to deal with it and move on to a place where you are able to look forward to things again and have a relatively happy life. Thanks!

[Anonymous]

You'll get there; everyone goes at there own pace and don't beat yourself up if it appears others are dealing with it "better."

I went through the stages, anger sadness etc, and eventually got to the point where i accepted things. I now do feel like it could be much worse rather than focusing on how it cld/shld be so much better. Therapy -- just saying this really hurts -- can help, bc once you say it, what choice do you have to accept it?

I found that trying to talk about it with parents of kids not in this situation does not help.

Support groups and meeting other parents in your situation helps.

[Anonymous]

I think there is a lot of denial and bargaining in the first few years -- he will be cured by x therapy, we will find the right therapy and he will be normal; he will learn xyz skill (talking or walking or whatever) by age 2/3/4 and that will make all the difference in his seeming normal. There is acceptance over a period of a couple of years and a real period of getting to know your child for who he/she really is and falling in love with THAT child, not the child of your imagination and pregnancy dreams. Then the real relationship begins. However, there are dips and depressions and angry feelings that can occur whenever you are around kids your child's age who are normal or around a gathering of cousins/family members/etc.

I don't know where you are now, whether your child was diagnosed at birth, has no diagnosis, is in an unfolding stage, but I think it's important to make friends with other special needs moms, to have a network of therapists who can "guru" you and to just let yourself be okay. I did a lot of acting "as if" in the first few years...acting as if I were okay with my life, and I realized after a few years that I WAS okay.

[Anonymous]

I have been down this road for 3 years now and find what the PPs to have said above to be really true. I'm still working on a lot of these basic issues and would love advice on how you just keep going.

[Anonymous]

Anonymous wrote:I have been down this road for 3 years now and find what the PPs to have said above to be really true. I'm still working on a lot of these basic issues and would love advice on how you just keep going.

I think you need to let go of perfection, either in terms of being that "zen special needs mom" who is totally okay with having an SN kid or being the special needs mom who is on top of every therapy and doctor out there for the particular SN in question, or being able financially to pursue everything for your kid -- it's like having a kid who is an elite olympic ice skater going to every special clinic across the country -- You have to have a life.

[Anonymous]

OP here. Thanks everyone for your input, and I'd love to hear other stories as well. I am and have been definitely where 16:29 describes -- thinking if you just reach the next "goal" everything will be all right (or better, or different, or whatever).

I think the anger is also really hard, but I suspect that will fade with time to some extent. I find that sometimes I'm angry with my DC, when it's not his fault at all. I find myself obsessing over things, wanting to run away, wishing he had never been born. Then I feel TERRIBLE about feeling that way.

I am a perfectionist and also very concerned about what other people think, and that makes this harder. I am definitely working through that and trying to appreciate him for who he is and take joy in the little moments, even if they are different than the little moments other people experience.

[Anonymous]

OP again. And I am struggling with how to deal with people I'm friends with who have kids the same age. I've been shutting them out for a while, but we used to spend time socially, and it's hard to find a balance. I think it's more my problem than theirs, but it's awkward. I don't want to feel bad about my kid, and being with them sort of makes me feel that way.

[Anonymous]

PP -- its ok to not be friends w people for a while, even if its more your problem than theirs.

THe anger goes, bc its not possible to sustain it

[Anonymous]

I think it's okay to be Angry Mom, sometimes. If you find that your anger is directed at your child, try to get out of your house more. Do you work? I did not leave off working, and I think that saved my sanity.

[Anonymous]

OP here again. Thanks for giving me permission to be less than socially acceptable sometimes (angry, antisocial, etc.) -- I totally think that's what I need to realize!

[Anonymous]

We are 20 months in knowing about DC's special needs and I'm still very angry sometimes, now not at fate so much, but all these interlopers in our family life that would not be there if it weren't for the diagnosis. So sick of therapists and appointments. Our healing process is complicated by the fact that no one can say for sure how close to typical DC will get. I range from thinking of the three of us growing old together to imagining DC caught up (see my question on this forum Is it really possible to catch up?). Apparently for some people it does happen so I think in some ways that holds up the grieving process but not necessarily in a bad way. For now, we're just living our lives. And DC is amazing and smart and wonderful no matter what anyone says.

[Anonymous]

Anonymous wrote:I think there is a lot of denial and bargaining in the first few years -- he will be cured by x therapy, we will find the right therapy and he will be normal; he will learn xyz skill (talking or walking or whatever) by age 2/3/4 and that will make all the difference in his seeming normal. There is acceptance over a period of a couple of years and a real period of getting to know your child for who he/she really is and falling in love with THAT child, not the child of your imagination and pregnancy dreams. Then the real relationship begins. However, there are dips and depressions and angry feelings that can occur whenever you are around kids your child's age who are normal or around a gathering of cousins/family members/etc.

I don't know where you are now, whether your child was diagnosed at birth, has no diagnosis, is in an unfolding stage, but I think it's important to make friends with other special needs moms, to have a network of therapists who can "guru" you and to just let yourself be okay. I did a lot of acting "as if" in the first few years...acting as if I were okay with my life, and I realized after a few years that I WAS okay.

This really sums it up. It feels much better now being the stage of loving the child I have, not the one I imagined. While i don't think he will be cured by therapies, they help A LOT. I still have the dips into sadness, but the despair passes faster than it did way back when. I I don't have days and days of crying jags. I do think I get delusional every now and then and think things are much more improved than they are and then reality hits, but I recover fasther.

One of the many contributors to me finding some happiness and peace with the here and now was finding a good ST,OT and PT for my child. Some suck or at least some sucked for my child. Some sucked for me which I think is bad for my kid. I have been insulted by hopefully well-meaning interventionists who just could not possibly empathize. I have been talked down to by idiots (yeah, my anger still surfaces) Once I found "the one" for each realm, I could feel the anxiety and sadness decreasing. I saw improvements in my child and I felt connected to the person like we were a team. Along those lines, I really wish there was more training of clinicians regarding how to connect with the parents. Some are naturals. Some have been there. Some IMO can do more harm than good.

[Anonymous]

A good friend of mine has a SN child and I've watched her go thru these stages over and over again, but with time she is accepting more and more about his condition. It broke my heart watching her come to terms with things. She was furious at the docs that diagnosed him and lashed out at them. And at the teachers who told her that he'd need a special aide to remain in their program. Her child is really bad off and might not get to experience the things most of us want for our child--a husband/wife, kids, college, job. I really feel for her and for all of you who have to go thru this. I really admire your strength and the love you have for your child(ren).

[Anonymous]

Anonymous wrote:A good friend of mine has a SN child and I've watched her go thru these stages over and over again, but with time she is accepting more and more about his condition. It broke my heart watching her come to terms with things. She was furious at the docs that diagnosed him and lashed out at them. And at the teachers who told her that he'd need a special aide to remain in their program. Her child is really bad off and might not get to experience the things most of us want for our child--a husband/wife, kids, college, job. I really feel for her and for all of you who have to go thru this. I really admire your strength and the love you have for your child(ren).

I'm sorry, but these sort of "admiring posts" are not helpful in general and in this context are downright intrusive. Do you admire the strength and love that other parents have for their children? My child is MY CHILD. OF COURSE I love her. Ordinary parents need to get over the notion that special needs parents are somehow extraordinary for loving their own children. That makes me so angry.

And referring to a child as "bad off." Please don't do that.

[Anonymous]

I am the mother of a child with autism who was diagnosed less than a year ago. I am slowly moving toward acceptance of this diagnosis, but I'm definitely still going through all of the stages. So much of my difficulty in getting through the stages comes from seeing my kid in physical pain and knowing that my child's autism is related to some underlying root medical cause, but not finding any medical expert who can help us. My child has severe gastrointestinal issues and on good days when gi upset is minimal, the autistic traits nearly vanish. On bad days like today, my little one is head banging and crying. I'm determined to get through this and to get help for my LO but I feel so alone. Neither DH or other family is interested in exerting any effort to help me find solutions, and I am physically tired from lack of sleep and dealing with my child and a stressful job. I just try to keep my focus on how much I love my child and I try to do at least one thing every day toward ultimately healing my LO and finding the answers.