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Anneof 5
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| Posted: Aug 04 2007 at 6:11pm | IP Logged
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How do you deal with the stress of raising a special needs child? My two have sensory integration disorder and now dd is going to be evaluated for speech. There may be more ahead that has not yet been diagnosed (adopted kids with very little background info and we have only begun evaluating them). I know many of you are dealing with A LOT more than I am (bless you). We started OT therapy for both this summer and it is going well but I am just feeling really stressed about it all. I am thankful we have found out what we did not know previously. I feel I have read a ton about it and I am doing the suggested homework from the OTs, making the adaptations at home. But this all affects me, too, and how I deal with them (can I handle it, can I keep hsing them, does my personality make things harder for all involved, what do I need to change about myself, etc.) I have prayed and had them prayed over and annointed by a holy priest (me too). Do you have any other coping ideas? There seems to be a lot of bickering between the two of them lately and it is just making it all the more difficult.
Thank you!
Anne
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folklaur
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| Posted: Aug 04 2007 at 11:51pm | IP Logged
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I hesitated answering this because I just don't know that I am going to say anything very helpful. But here goes.
My brother had a brain tumor when he was two. It was the size of a small grapefruit, and after finally finding a doctor who would even do the necessary tests to even find it ( no cat scans in the early 60's), it really destroyed much of his brain. He also suffered a stroke a few years later. His "official diagnosis" is cerebral palsy, quadriplegic, and profoundly and severely retarded.
They told my parents to put him in an institution and forget about him. Obviously, they didn't. Then when he was 7, my parents found out they were pregnant with me. My mother said she was terrified. How could she possibly do it? My brother was 7, she needed to feed him all his meals, give him numerous medications many times a day on schedule, change his diapers, plus do the special physical therepy to keep his muscles from atrophying, and help his brain re-learn what it could, etc. The bulk of her day was spent doing all the normal "housewife" things, plus besides just being Mommy, also basically being a fulltime nurse to my brother. My dad was a police officer, so he worked long shifts, too, so she did a lot alone.
But - know what? She was a great mom to me, too. She was also class mother, things like that. How did she do it? I don't know - but I do know she talked to God - all the time. Even out loud, often. If you asked her now if she prayed a lot, I would bet she would say "no" because in her mind "praying" would be like saying the rosary. But she just talked to God, all the time. I think her life was lived in constant prayer. She never complained, not where I could hear, anyway. She never was "mad" at God. She always just said, "Well, Vinnie just is the way he is." End of story, ya know? I am sure there were many times she was exhausted beyond belief. She still is, actually. She tries to go to the Nrusing Home every night to feed him even now.
So when my middle child was "different" - he has Asperger's Syndrome - I had a great role model already. Thank goodness, because I was sure God had made a huge mistake picking me to take care of Jaiden.
I mean, God picked YOU especially to take care of one of His "Special Blessings". That thought gets me through a lot of days. When I went through a dark period in my life, where I was sure I had been abandoned by God (how silly to say that now) I realized how far from the truth that was. He gave me Jaiden, which is like a special job, if that makes sense. That was the realization that changed my life, and also made me realize what a responsibilty I had.
So, pray. Talk to God. And use this board as encouragement when you need to, and to vent when you need to, and to share all the special moments too. Getting on here is what relieves my stress lots of days.
Okay - this was really long, sorry 
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Taffy
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| Posted: Aug 05 2007 at 10:03am | IP Logged
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Thank you, Laura,
Those words you wrote were definitely words I needed to hear. 
Thank you. 
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Susan
Mom to 5 on earth and 1 in heaven
Susan's Soliloquy
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Willa
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| Posted: Aug 05 2007 at 12:09pm | IP Logged
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Anneof 5 wrote:
| We started OT therapy for both this summer and it is going well but I am just feeling really stressed about it all. I am thankful we have found out what we did not know previously. I feel I have read a ton about it and I am doing the suggested homework from the OTs, making the adaptations at home. But this all affects me, too, and how I deal with them (can I handle it, can I keep hsing them, does my personality make things harder for all involved, what do I need to change about myself, etc.) I have prayed and had them prayed over and annointed by a holy priest (me too). Do you have any other coping ideas? |
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I am sure the bickering is an outlet. Sometimes in my home bickering comes right before a maturity leap. Maybe the SI therapy is having its effect but in the transition time, the kids are a bit less comfortable with the various changes.
About stress -- certainly, it's a biggie for parents with special needs children -- all the questions you mention.
Here's a couple of articles on stress and special needs:
Reducing Special Needs Parent Stress
Stress Management -- a lot of articles with practical advice.
It sounds like the big thing burdening you right now is questions and uncertainties about the future. For me, it comes in waves. Sometimes I can keep my focus on the present and celebrate the progress my child is making; at other times, uncertainty steals my peace.
I've learned it's useful for me to research and prepare (sounds like you are like that,too) but there's an overload point where it becomes too much and it's time to back off and just focus on what I can do today, this week, right now.
Another thing that helped me is keeping a "joy" log. DH and I used to give priority to small joyful routines (like walking together to buy a latte at the bookstore) and to joking (humor is a stressbuster)
You could also try turning your research mode towards "special needs parents issues" for a while. I read a bunch of books on coping with multiple-issue children. Some of the kids were way worse off than mine (and that was saying something). I gained perspective and some understanding of the feelings I was coping with.
Lissa wrote a post about joy and laughter in the tough times
Hope something here helps!
__________________
AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
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JuliaT
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Laura, your post brought me to tears. Thank you for your wise words. I, too, needed them right now.
Anne, there are three things that are helping me deal with the stress:
1) prayer. Every morning I wake up with a flutter in my stomach as I think about the day that looms ahead. The fear of the unknown nags at me. I'm not sure how many meltdowns I can deal with in one day. I'm not sure if I have the strength to fight with yet one more professional in trying to get help for my ds. I'm not sure if I have the strength to deal with all that is in front of me for that day. In giving it all to God, I am able to just focus on the moment that I am in. God knows what is going to happen during my day. He already knows how He is going to help me through it. My job is to just get through it. Prayer helps me do that.
2) reading His Word. I am fairly new to all of this. All of my children have sensory issues but they all come in varying degrees. My son also has some learning problems. I have finally come to terms with all of this in the last few months. I feel like I am going through a time of grieving. In reading the Bible, I am able to infuse the joy of His Word into my (at times) overwhelming sadness. I am also, through reading, able to find His refuge and His fortress from all that I have experienced through my day.
3) being able to have some alone time to recharge and to put things back into perspective. Many days, I have to wait until the kids are in bed before I can have that alone time. Some days, though, if life gets to be a bit stressful, hiding in my bedroom for just a few minutes helps alot. I am finding that I am a much better mother when I can have a bit of time to myself.
Maybe you are already doing these things. But I have found in fillng my days with these 3 things, it helps deal with the unkowns of the day.
Know that you are not alone.
Blessings,
Julia
mom to 3(8,6,4)
http://www.homeschoolblogger.com/Juliainsk
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Anneof 5
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| Posted: Aug 06 2007 at 10:49am | IP Logged
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To all you ladies who answered,
THANK YOU so very much. Laura, you were truly blessed with a wonderful role model. Willa, I am exploring those links and they look very helpful. Julia, thank you for your thoughtful response also. Do you have any particular books of the Bible you find helpful or inspiring?
It is just especially hard lately as I keep running into well meaning parents who are encouraging me to check out Fetal Alcohol syndrome and other services and areas we have not gotten to yet. I feel guilty that we did not pursue things earlier but we were told by preschool teachers, etc., that our kids were just fine and maybe I just worried too much. However the OT we are working has totally validated my concerns and said I was tuned in in all the right areas. DD was released from ps special ed a year ago as she no longer "qualified". Now it is all coming out. She is having days full of negative behavior and meltdowns one after the other. My muscles are in knots! They are in a church program this week in the mornings so I am going to try to take full advantage of some alone time and also see a friend I haven't seen in several months. Maybe that will help!
Thank you all so much again and if anyone else can add anything please do! God bless!
Anne
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marysjoys
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| Posted: Aug 13 2007 at 12:02pm | IP Logged
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I get email updates from the board, and I feel connected to all of you.You lift my spirits and keep me praying.
Here's another way to stay connected; I have just begun the First Ever Down Syndrome Blog Carnival over at Cause of Our Joy Come on over and meet some new friends!
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Mom to three lovely girls, Gabby, 13, Bella, 9, and Christina, 5 who has Down Syndrome.
My Link
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4Real Forums : Special Blessings
Topic: How do you deal with the stress ?
