The stages...

There are 5 stages of grieving for families of children with Autism as I have read. I'm going to use today to talk about these and some more I've found.. These last different amounts of time for each parent and as the developmental milestones pass or grade levels pass you may float in and out of some of these at any time. It's a never ending process and as long as you have a great support system and team, the stages become easier to handle because you are not alone. It's a healthy way to keep you on your toes and as if you don't have enough to worry about, to try and take care of yourself.

I would like to change it a little, make my tweaks and add a word or two to the typical 5 stages. Let's try this: denial, shock, sadness or grief, bargaining, giving time to adjust anger, loneliness, depression, and acceptance. There are multiple lists you can find on any given website. I've been in all of these stages and really am still working through and around them everyday.

I'll speak as how I've managed through these steps and how I get through them when I find myself caught up in the middle of the process once again. I really think this is the part of having a child with any kind of "issue" and I use the term lightly. Getting the words that your child is different and is probably going to be different for most of their life that changes the way you see everything.

1. Denial: This one is hard for me. My family has told me that they noticed Eden's differences before she turned 3 years old. They also said they tried to tell me what they saw. There were small conversations about her not speaking well and I dismissed them. I made up excuses, reasons, and then there was the constant worry. I worked really hard with not talking for her, thinking if I just made her talk she would just start. I would make her repeat words and she would say them perfectly, but why couldn't she ask for a drink? She couldn't tell me she was sad, upset, or even scared.

2. Shock: I remember specifically, Ed and I walking into that office. We had already had our little parent "pep" talk. We agreed no matter what that Eden was still our baby girl. We had already talked at length that she would probably test on the "spectrum", so she would probably get the "lesser" diagnosis of PDD-NOS. She wasn't that far on the "spectrum" that she would get the diagnosis of Autism. When the Doctor said the words, "With this information, I came to the conclusion that Eden doesn't meet the criteria for PDD-NOS and she does fit the criteria for Autism." We sat there, attentive, listening, and barely saying anything. Thankfully, the Doctor has been through this enough to make that the question and answer portion of the meeting, then we were off with the wise words of the Doctor telling us, "Don't go home and look up all you can on Autism because it will freak you out. Just take it in a little at a time, call me if you have any questions on anything, but no matter what it will be alright." And there we were. Here is the post I wrote about the day that we went to the Doctors office.

3. Sadness or Grief: Yeah this is a good one, NOT. The days even weeks afterwards (and sometimes still now), I start on the terrible "What if's..." I start thinking about the future, and I do understand that all parents worry about this, but I even worry about if she will be able to live on her own. There is no telling. Feeling the sadness of the things that should come so easily for her that she has such trouble with. Of the child she could have been had she NOT been handed this burden (really can't think of a better term but this word doesn't even begin to describe that there is good and bad). This is one of those subjects that I talk about a lot here is one of my posts on it.

4. Bargaining: I did this one too. I think this one stems from uneducated parents and I was one of those. I mean really I have never even heard the word and now that I had all of the information and there is such a huge amount of it I didn't know which of it pertained to Eden. There are those days, the good ones. Every child has them, but on these days I tried to point out all of the things she did that weren't "Autism like". She LOVES me, I thought children with Autism didn't show affection, I was wrong. She didn't have those "weird" stereo typical behaviors, I was wrong about those as well. Let's just say, she has Autism. I didn't know what it was and now I do.

5. Give yourself time to adjust: This is one of the most important stages. Once you have a diagnosis, there will be therapies, school, case managers, helpful parents who have been in the business for a while, You can listen if you want, try not to actually make any decisions right as you get offers for IEP's, therapies, schools, or anything. Remember, that you can always ask to take papers home and read them. They may not like it, and warn them ahead of time so they are able to give you a copy to mull over. This is not the time to make huge changes, there are so many that are going to come. More is not necessarily better, nothing will be lost if you take an extra week or two or however long you may need. It's going to be ok.

The stages after this point are the ones that never really go away, these are different stages and you can move back and forth around in them. They may not last long or you may go in and out of them sometimes without knowing what it is until you move on.

6. Anger: I come here still once in a while. It's not a fun place to be. When I'm here, it usually means I need some time off. And my husband is only too willing to make my insanity go away. I really can't explain where the anger comes from either exhaustion, frustration, or I'm just mad. It just comes out of nowhere sometimes and it's the one I really love to see go.

7. Loneliness: This one rears it's ugly head once in a while also, not so much anymore because there are supports now that you don't need to drive you children too or find a sitter for. One reason I LOVE the internet. I do have some really wonderful friends and family and they are always willing to offer some company or a laugh when I need it. I do this and well it keeps my brain working. I do sometimes still have difficulty because my husband works and goes to school so it's pretty much just me from September until May (minus the breaks we get).

8. Depression: My whole family at one point or another has had this issue. It's not surprising that it's come rearing it's ugly head. I have been here before I was a parent of a special needs kid. I have "tells" if you will and my family and husband know when to tell me to get out of whatever "funk" I am in and start dealing with it or call the Doctor (which I highly suggest) If you don't like medications (which I do not but I have needed them), it's very understandable. If you really want to be there for your child and be able to care for them, you must be at your best and that is the most important thing. Remember it may be just for a while and when you feel better you and your doctor will be able to discuss what's right for you.

9. Acceptance: This is what I call my "happy place." This is where you find peace in your everyday life. I'm not saying that it means it's always easy but you feel different about everything. You find smiles where you didn't see them before. You see gains in skills that you didn't notice before. The future isn't a daunting, the past isn't as sad. It's a great way to feel, just content in your family.

I think these stages tell a pretty good story of where I am in this journey, I'm still going through them. I keep pushing to keep myself in the best place I need to be to get my family through the tough times. Where are you? How do you feel about these?