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Mary FL
04-03-2012, 07:48 AM
Forgive me for asking so many questions and probably looking naive or whatever.

You get a diagnosis.
You start treatment(s).
You may need further testing for your child. Do you do that now or wait? Do you really want to slap another label on your child?
You talk with others, do research, get library books out and so on.
Everyday life is going forward. You try to keep up and do your best.
Your father and your husband's father are near the end of their lives.
You're worried about your other child who needs you.

When does it get better? When do things seem to get manageable? When do the tears stop? How can you and your husband find time to be a couple?

By stages, I mean like stages of this whole process.

Rachel Jane
04-03-2012, 07:53 AM
:group:
Sometimes life is very hard and you just have to muddle through as best you can. Just do each next thing. Suss out what is important and let the rest drift for a while. Cry when you need to, but don't reject laughter. Try to find little things in which to rejoice.

Hollie in SC
04-03-2012, 08:03 AM
:group: Mary, you have so much on your heart right now. It is my opinion that when you start dealing with the special needs (whether at birth like we did with Noah or later like you are) you end up going through much of the grief process. And for us, there are stages. Early on it was hard to see our sweet boy and not automatically think of his diagnosis. At different times we have grieved again. I remember specifically around Christmas when he was about 19 months old. We have a niece who is 18 hours older than him and receiving Christmas cards that year with newsletters reminded us of how far behind he was. It was hard. For us, there have been stages.

Adding on top of that the situations with both fathers and you have more than your share right now. :group: I totally agree with RJ, just do what you can and don't push yourself to do any extra right now. It is a time to give yourself much grace and just do what is necessary.

As for your son, I've seen parents do both. Some pursue more immediately and some wait. That is something I would suggest that you pursue when you and your dh are both ready and in agreement. And with all that you have on your heart right now, I would think waiting would be very appropriate. :group:

Mary FL
04-03-2012, 09:07 AM
Thank you for your replies.
I wonder about waiting for further testing as he's 10 already. Agree dh and I have to be on the same page.

What about the guilt? Dh saw issues a couple of years ago, maybe more, and I just didn't want to see it or truly didn't see it. :sad:

ShelleyW
04-03-2012, 09:50 AM
Mary, dh and I were in opposite positions of you and your dh. I knew something was wrong and he thought time would help. Dd is now 10 and we finally had her tested this year. To me, knowing was such a relief. She has quite a few labels, but I am ok with that b/c now I know how to help her and where to start. I had her tested privately so dh and I are the only ones who know about her "labels". I have not even shared them with the grandparents. All of that is a private matter and you have to decide what is appropriate for your family. I have been in various stages of grieving this year and don't have some of the other issues you have going on as well but it has been tough. Having a SN child is the hardest thing I have ever had to deal with. The only thing that gets me going, is that I KNOW she needs me and no one else is going to care for her the way I do. That is enough to get me out of bed in the morning. It is a loooong road for us but I keep reminding myself that there is no rush to get to the end. We have lots of time and that is what she needs.

Give yourself lots of grace and remember that life happens. Losing a few weeks or months to care for other family members is a much bigger life lesson than the math lessons you had to shelve for a while. As for siblings who don't have special needs, what an amazing lesson in caring for someone who is less fortunate than you are or less able. Compassion will get your children far in life.

:group:

TonyaP
04-03-2012, 12:09 PM
Yes there are stages. It's just like mourning.

You are in shock right now, the denial is wearing off a little, but it will come and go. The additional stress of losing relatives would be enough in it's own right.

You are at the bottom of a very large mountain. You will climb each day. Some days, you will slip and all your effort will be for naught. You will get up the next day and start climbing again. That has been my experience.

I take medication, and see my own doctor for pysche checkups. DS therapist takes time to talk to me about how I'm copinng, because my ability to cope affects my ability to help DS. If I am honest with her and tell her my specific struggles and thoughts about DS, she will give me tips on how to redirect my thoughts and his behavior. We are a team. IMO the best thing you can do for your other child is to acknowledge that they may have to make some adjustments and then work on getting the SN child's life running smoothly. My kids are much happier when we don't have daily explosions.

I had to tell DH that he was on hold. For a man, maintaining normalcy is very important and he's gone all day so he just doesn't realize the minute by minute strain of waiting for what comes next. I had to do some yelling :unsure: to get my point across, because he is a man after all- not exactly Mr. Empathy LOL. Anyhoo, we talked honestly about my sincere wish to have time as a couple going out, etc. I asked him as my supporter and partner to help me by not making me feel worse when I didn't find the time. It's NOT going to be like this forever, but for now, I sure don't need to feel any pressure to do one more thing in my day whether it's sitting down to watch a movie or doing the dishes.

About that mountain... when you live on the ground level, you never really realize how beautiful a mountain view can be. And the view is not just from the top of the mountain. So, while you are climbing each day, tugging and pulling your burdens with you, be sure to sit them down now and then and turn around and look at the view. Try your best to forget for a moment or two the climb ahead of you and the rocks in your shoes and just enjoy what you see. :group:

Finally, and this will sound really cold, but I can't handle death well. For me, I need to mentally say my good-byes and start the process of letting go. This is not our home and we all have a future destination. If there are opportunities to enjoy that person, the take them. But in your heart, you have to let them go home. :group:

TonyaP
04-03-2012, 12:16 PM
On diagnosis-

We did intital physical and psychological testing to find out what was happening. The report gave me information to get to work meeting DS where he was and working with him. As I mentioned, we continue to see his therapist. We continue to talk about new issues that pop up, issues that have been relieved through medication and therapy, etc.

But we don't need to rush to test for anything else. Long before there was a test for everything, the therapist/doctor just observed and identified. If you are working through that process, I think it's OK to let it work. DS' phchiatrist (not the therapist) would like DS to be evaluated for Aspergers again sometime just to know. But, it's not an emergency since we aren't in school where I need the paperwork to get services. And the truth is, some of this will take years to figure out. There's no "take a test, get an answer" for these conditions. The evaulations can point in a direction, that's all. As long as you are continuing to be attentive and addressing needs as they arise, you are on the right track.

Tiffany
04-06-2012, 01:42 PM
Others have answered this so eloquently. I loved what Tonya wrote about noticing the beautiful views while climbing the mountain. I don't really know how to answer your questions, as I (and I'm sure many others on here) have had or have the same questions.

You are not alone. :group: Praying for your needs today.

Mary FL
04-07-2012, 05:08 PM
Today started out well. Then something happened. Just when you think going gluten-free is helping. Or, you're working hard on seeing the positives and strengths in your child...

Rachel Jane
04-07-2012, 05:25 PM
Today started out well. Then something happened. Just when you think going gluten-free is helping. Or, you're working hard on seeing the positives and strengths in your child...

:group::group::group:

Jennifer in VA
04-07-2012, 06:21 PM
Hugs to you Mary! I know it's tough. We're going through our own rounds of testing, tutoring, more testing, pausing on tutoring until physical things get taken care of. It's been hard to not being to over analysis what has been done, what should have been done sooner, what could have been done, should we have pushed harder, etc.

I do know it will all work out in the end!

Katie
04-07-2012, 08:30 PM
Oops ~ I repeated my post (see below)

Katie
04-07-2012, 08:53 PM
:group:'s to you, Mary!

Life is so hard sometimes, isn't it? Although I am not in your shoes, I think I may understand some of what you are experiencing.

Here are some things that help me keep perspective ~

Give my burdens to the Lord each day before getting out of bed
Pray
Read God's Word
Listen to worship music
Choose to nurture my relationship with my husband and daughter
Spend time with my dearest girlfriend, sharing each other's ups and downs
Share prayer requests with dear friends
Journal how God is blessing me...even in hard times
Continue to show love to our son verbally and physically
Ask myself "What might God be trying to teach me?"
Look for ways to bless others
Take time to "smell the roses"
Take care of myself

Do I do all of these things all of the time? No.

I need to choose to do these things, and I try to remember to take baby steps!

When I screw up, I ask for forgiveness and try again!

God is faithful! His grace is sufficient! \o/

Praying with you and for you, friend ~ :group:

mariah m
04-08-2012, 06:17 PM
I've walked this road for a long time. I usually feel like I am failing something or somebody. I am trying to let go, let God and just do what I can. Pray for what the priorities of the season are. If your fathers are dealing with failing health, give them your time. Don't neglect your marriage or your health. I've learned that life does not stop happening because I have a special needs child. Yes, it's overwhelming.

:group: We all understand.

Jen in AL
04-10-2012, 04:38 PM
:group:
Like others have said, we as special needs parents do go through the five stages of grief. I have also found that the cycle repeats for me. I think it will always be that way. I also agree that you need to spend time in prayer, reading the Word, listening to praise music, take time to be a wife, and very important: take time for yourself! Do something you enjoy. I have started taking walks alone when my dh comes home in the evening. I have also started reading what I call "fluff" books...just pure fun fiction!:) I am also meeting with friends at least once a month for coffee & conversation. It took me years to realize that I need time to just be "me." It's not selfish!:) Plus, I have also seen that it helps me do a better job as a wife & a mom. I am praying for you & for your father & father-in-law. I hope that you feel the peace that only Jesus can give during these hard times.:group: