Looking for parents of special needs children


#1

Hello,

I am looking for other parents who have a child(ren) with needs. DH and I have a daughter with what seems to us to be extreme needs. The hardest part for DH and I is the complete unpredictability of these needs. We have found ourselves becoming entirely wrapped up in our daughter’s situation and don’t want this to continue.

If you have a child with needs I’m sure that you understand what I am asking when I say that I want DDs situation to be just one aspect of our lives and not our entire life. We have another daughter that we need to parent. We have a marriage that we need to maintain. We have a life that we want to live. But we feel so bogged down by all of this.

We have enlisted every help we can to help with this. The one thing we don’t have is a respite caregiver because it is too burdensome financially.

What I am looking for is other families who have a tough situation and are moving forward with it gracefully. DH and I are trying to ask God to help us with our burden, but I think we must need to do more.

Is there anyone else in this situation?
Thanks!!!


#2

My wife and I are parents to two kids as well. Our youngest was born 10 years ago with Spina Bifida. His needs are 95% physical, though for a family any needs are special. He was diagnosed before he was born. We cried for a day and then poured ourselves into learning everything we could. My wife sought out any and all assistance. My son has CAP-C (Community Alternatives Program for Children). It gives him/us loads of assistance including Medicaid and respite care. I know other states have this program or something similar.

Educate yourselves. Find groups of families (support groups) that have the same issues. A local children's hospital should have someone that can point you in the right direction.

Please feel free to contact me at [email]ncconch@yahoo.com[/email]. Both my wife and I will try to help you get through the maze and enjoy your family - as a whole. Finally, pray, pray and pray some more!


#3

You might consider joining one of the support groups here.

On a survey, I found this very general one:
forums.catholic.com/group.php?groupid=71

And here is a more specific one:
forums.catholic.com/group.php?groupid=165

I doubt that you could start a very specific one, such as Down’s or Autism, and get much response. Hope this helps.


#4

Doctor Ray Guarendi, clinical psychologist, father of ten (mostly adopted, and some with special needs) is an invaluable source of counsel in all things child related. He has a call-in radio show on EWTN, and has written several books. Here's his site: www.drray.com/

Christ's peace be with you.


#5

From the sound of it your child is young, no?
This is sort of tougue in cheek, but when you find the way to not feel bogged down or to get all the help you need to stay afloat, could you write a book or give me your secret?

Really and truly, it’s a journey. I have 2 of 3 of my kids special needs. It is all-encompassing, but they’re the kids God gave us. If I didn’t have them I may have been all-consumed with something else. But God has the Big Picture here…and that’s where trust comes in.
There are support groups, etc…but I have found that I get more wrapped up the more I talk about it, instead of accepting and taking one step at a time with where they’re at. I ran myself ragged for 5 yrs, then sort of snapped.

What’s the disability? Age?


#6

Thank you everyone for your replies.

Gretahope, this is exactly what my question is. How do I NOT talk about this as the main component in my life? DD is 4 years old and this is all encompassing. I don;t think that DH and I are over doing it by giving the attention that we have given it thus far. However, we are never going to “fix” DD’s needs; only manage them. How can we go about this gracefully and give our struggles to God? I feel like I have asked God for help but I must be doing it wrong. I am still an angry and anxious and borderline unhappy mother. I don;t want to be this way. I want to cherish every moment with the children that I so desparately wanted. I guess I don’t know how to ask God for what it is that I need…

Has anyone done this successfully?

Gretahope, you must be in a better place than I or else your house is in worse shape than ours. Can you give me some concrete examples on how make it through your day? What do you ask God for? I hope that isn’t too blunt…

Thanks so much!


#7

abeD,

my daughter has Down syndrome. she's 4. she's the youngest of ten kids (oldest is 30). all i'm about to mention are the challenges. of course naomi is the light of my life, joy of my heart, the delight of my very soul. but that awesome love doesnt erase the real-life challenges we face.

i'm sharing some of our family facts and trying to avoid the almost inevitable chorus of "look on the bright side." you're the mother of a special needs kid-- you're GOOD at trying to look at the bright side! i'm just trying to meet you in the real stuff with some ideas of what's helped us.

so here's at it. first the sort of philosophical core-- staying in reality. it helps a LOT:

when she was a tiny baby, naomi had very significant feeding problems and the method we created defined every hour of my day for 16 months completely, then for another 6 months to a lesser, but very significant degree. once or twice during that time i sort of marveled, "is this what my life means now?"

the only safe and true answer was "YES." yes it's true that i will struggle to make time for my other kids. yes it's true that we seem to be living one very steep learning curve. yes it's true that a huge part of what i used to do is not happening now because i'm doing this intead.

she had significant heart defects (with eventually miraculous outcomes) she'd go to the cardiologist every 4 to 6 onths for looooong days of tests, tests, more tests. i had tried once or twice to bring another or two of my kids just so we werent gone away from home so long, but that was a bad idea. so for quite a few days of shuffling from one hospital clinic to another specialist, i asked myself the same questions: is this what my life means right now? me away from my other kids so much? me advocating for my baby to everyone i speak? my husband and i spending 7 hour days passing a bored baby back and forth? same answers. same process. YES. this is what's really required.

then she didnt walk till she was 38 months. same questions, same answers. same process. Accepting, YES. this is how it is.

now she's been walking for a year. and at age 4, she's exhibiting some difficult three year old behaviors. shopping with her has become a challenge. meals are tricky. language delays increase frustration. she's in diapers and will be for some time. same questions. same answers. same process. ACCEPTANCE of what's true.

accepting what's true is integral for us at every juncture.

it seems you have done that-- esp. when you assert there's no 'cure' only management. so, your first task is happening-- asking yourself hard questions, giving yourself honest answers.

next are the solution tools. these things havent solved everything, but they sure help. and they're all little things:

i elicit my kids' help in specific, repeated ways. one of my girls set up my breastpump almost every time i used it, 5- 7 times a day for almost 2 years. she was good at it and helped her feel helpful to the baby. these days they stack the diaper basket and other things.

*i read out loud a lot. * a lot of time early on was spent with baby in my lap. feeding took forever-- like round the clock, really. if i could, i'd read out loud while i did whatever i was doing. sometimes story books, sometimes the instructions for the new coffeemaker-- whatever. i engage the siblings in some conversation about what i'm reading.

**youtube. **no kidding. my little loved and still loves music. so i click on youtube and my other kids watch, too. we explore a lot of music that way and we learn some cool songs. (none of them 'kid' music. i HATE supposed music for kids.)

**treats and toys and fun people-- **when someone does have to come watch my kids because we're doing a cardiology appt or some other appointment, i try to have a special game or toy and a treat for the caregiver to share with the kids. i try to make sure the caregiver is a special/ fun person too. and when gone, i dont expect normal life to go on. more fun, more play, less chores etc. of course it means that, once home, there are toys and messes to attend to, but we eventually get it done.

dates with kids-- if not me, then dad would take the other kids to simple, low cost but fun things: museum, walks in woods, kite flying etc.

follow me and tell me-- kids would want to talk about something special-- a bird they saw outside, a superhero they love, and i'm busy with naomi's needs i say, "can you follow me and tell me?" usually they're willing. i try HARD to listen and engage.

sit next to me-- i see my husband doing this naturally and i adopted it intentionally. he often invites the kids to come sit next to him. it just helps us stay connected.

**small unplanned little special stuff-- **our next littlest, josie, loves flowers and vases and arranging. if i'm at the grocery store and the carnation boquets are on sale, i'll ask her opinion-- or call home to ask her if i should buy on bouquet. if it's over the phone, i describe the colors and she chooses. by the time i'm home, she already has the vases and scissors out to do her florist magic.

(as mentioned above) *i call home to talk to the kids. * i have to work outside of home now. i call and say, what's the best thing about your day so far? we say a little prayer and hang up."

permission to check out, taking turns checking out when my husband and i do all or many the things i listed above and we do them often, then we dont have too much trouble giving ourselves permission to check out-- renting a movie, popping some popcorn and closing the door. get a sitter? yes. can we afford it? no. so i guuess we'll be having pancakes twice this week instead of once.

that's all i can think of for now.


#8

[quote="abedog13, post:6, topic:211394"]
Thank you everyone for your replies.

Gretahope, this is exactly what my question is. How do I NOT talk about this as the main component in my life? DD is 4 years old and this is all encompassing. I don;t think that DH and I are over doing it by giving the attention that we have given it thus far. However, we are never going to "fix" DD's needs; only manage them. How can we go about this gracefully and give our struggles to God? I feel like I have asked God for help but I must be doing it wrong. I am still an angry and anxious and borderline unhappy mother. I don;t want to be this way. I want to cherish every moment with the children that I so desparately wanted. I guess I don't know how to ask God for what it is that I need...

Has anyone done this successfully?

Gretahope, you must be in a better place than I or else your house is in worse shape than ours. Can you give me some concrete examples on how make it through your day? What do you ask God for? I hope that isn't too blunt..

Thanks so much!

[/quote]

Wish I could just give you a great big hug!:hug1: and one for all of us with special kids!:grouphug:

Don't know if I'm in a better place or worse shape, although I usually "feel" like my home is in chaos...but it's actually getting better as I get my focus off fixing my kids, and onto me getting mentally healthier. But that's another story :blush:

As for you, you're in the belly of the beast right now...since your child is young and there's so many questions. Monicatholic sounds like a pro of pros. Wow. My hat's off to her, big time!

I have a child w/ autism, but not exactly...and he has all 12 or so doctors scratching their heads b/c he doesn't respond to therapy. He's nonverbal, for the most part...but he's 6, 52 lbs, very tall and beginning to have behaviors that are dangerous. No one knows what to do. He's had intestinal problems, eating problems, growth problems, many developemental delays, severe (lack of) speech problems and some visual problems. My other son is ADHHHHHHD, with an Auditory Processing Disorder. He's like 10 kids in one and takes up all the psychological space in the house. I've tried different meds and nothing works. Enough of my story. But you can see how my oldest child (typical) would feel like he doesn't exist. One or two parents can only do so much.

But that's where God comes in. Surrendering to what IS brings peace, although there are steps to take to gain insight into issues, etc...but our culture wants us parents to have the "perfect" kids, when God gave us "our" kids. Somehow, someway...God will give the grace to move through.

I have to go now, but feel free to PM. And I will check back tomorrow or next day.

Just know that you're precious parents, and that God entrusted you with a gift unlike any other...again, there's a bigger picture here. It's just hard being in the belly of the beast:(


#9

I have a child w/ autism, but not exactly…and he has all 12 or so doctors scratching their heads b/c he doesn’t respond to therapy. He’s nonverbal, for the most part…but he’s 6, 52 lbs, very tall and beginning to have behaviors that are dangerous. No one knows what to do. He’s had intestinal problems, eating problems, growth problems, many developemental delays, severe (lack of) speech problems and some visual problems. My other son is ADHHHHHHD, with an Auditory Processing Disorder. He’s like 10 kids in one and takes up all the psychological space in the house. I’ve tried different meds and nothing works.

this is an awesome set of challenges for one set of parents to meet. simply huge.

the blessing of Down syndrome is that it’s just that: a syndrome. and the typical facets of the syndrome are well-known. there’s no head-scratching, no wonderment and TONS of support.

the behavior problems associated with Down syndrome-- many behaviors stemming from an apparent stubbornness (which i believe, for naomi, are assertions of self as a result of language frustrations) are all pretty well documented. none of this is a mystery.

greta, to be accepting of what IS in the face of not really KNOWING what IS really is an astonishing grace from God. you’re a warrior. i’m inspired and humbled by your testimony.

i wish you moms were in our neighborhood. at our parish, we’re beginning an Inclusion Ministry for specially-abled persons and their families. i hope and pray and ask Jesus to bless the endeavor-- to take it right into His Most Sacred Heart and bless it-- bless it so that our Inclusion MInistry can be as loving and supportive to the FAMILIES as we hope to be edifying to the specially-abled persons themselves.

i wish you were here.


#10

Greta and Monica, thank you so much for your stories. I keep telling myself that I accept what I have been given and I do truly believe that. However, reading both of your stories shows me there is a difference to me in accepting the situation as a whole and accepting all the mundane, daily pieces that make life so hard. I do believe that I have whole heartedly accepted that we have a child with unique needs. However, I think I need to stop an work on accepting each and every step that individually makes up the whole situation.

Like Greta, I also have a daughter who has autism but doesn’t. She has an autoimmune disease that causes autistic like behaviors. The most serious and alarming symptoms are all behavior based. The physical and motor delays are much less of a concern to us, although they are there. Monica, what you said: “to be accepting of what IS in the face of not really KNOWING what IS” seems to be exactly what I am trying to figure out how to do.

I did come across a simple verse today that I am hoping will help comfort me in our many times of crisis. I thought I would share it in case it might help others too: “A generous man will prosper; he who refreshes others will himself be refreshed.”


#11

[quote="abedog13, post:10, topic:211394"]
Greta and Monica, thank you so much for your stories. I keep telling myself that I accept what I have been given and I do truly believe that. However, reading both of your stories shows me there is a difference to me in accepting the situation as a whole and accepting all the mundane, daily pieces that make life so hard. I do believe that I have whole heartedly accepted that we have a child with unique needs. However, I think I need to stop an work on accepting each and every step that individually makes up the whole situation.

Like Greta, I also have a daughter who has autism but doesn't. She has an autoimmune disease that causes autistic like behaviors. The most serious and alarming symptoms are all behavior based. The physical and motor delays are much less of a concern to us, although they are there. Monica, what you said: "to be accepting of what IS in the face of not really KNOWING what IS" seems to be exactly what I am trying to figure out how to do.

I did come across a simple verse today that I am hoping will help comfort me in our many times of crisis. I thought I would share it in case it might help others too: "A generous man will prosper; he who refreshes others will himself be refreshed."

[/quote]

Sorry it took more days than I said to reply:blush:
You're using a scripture at the end that is so near and dear to my heart from Proverbs :p

Ah yes---the daily grind. Where the rubber meets the road, just coping with what IS, nevertheless accepting what IS. I get that. No candycoating it: It's tough. I guess it helps to know that the mundane is what life is pretty much made up of, and that having this child may gain you more gold (James--our trials turned to gold), if they're done with some love. This is all called Trust in what you can't see, hear, know of the future, for you or your child. God has ground me down to this perspective, after having been the kind of person who is in control, likes all duck in their row, etc. Yikes:eek:, you can see that this has been a real stretching experience for me, b/c I have scoured the internet, traveled from state to state, from doctor to doctor, therapist to .....you get the idea. For 5 years now. But as of late, I have determined that when/if God prefers that I get "the answer"as to the core of what's wrong with him, that's when it will come. I know now that I can't kill myself to get it. Loving him, accepting him now is the important thing.

Yes, I still google, make phone calls, etc...but my head is in a different place. I won't kid you, it's scary at times....thinking I might still be changing a night diaper when he's 22 years old, or still having him grab my hand to pull me to what he wants, or nursing a wound he caused. But to NOT know may be what I need right now.
I have a friend with a daughter with a severe disability, and the D is now near 20. The mom has become pretty bitter, saying "some people get an easy/good life, and some of us get %%$# on a stick." I understand her plight...but I want to avoid that outcome, as she is doing things physically to herself that will quicken her demise.

My H checked out of this for years, and that was truly devastating, shouldering this on my own. Now he is sick himself.

God seems to have a sense of humor regarding what He thinks we can handle. You've probably heard and will hear tons of "good advice." Just smile at the person and say nothing. At times you'll want to shake them, but just know they're at a loss.

Please PM with anything/everything you want. I have a school meeting tomorrow at 3 EDT, and for the most part that has been the largest spider web of this whole thing. I need prayer for him, for he is not being served there. I will also pray for your precious one.

Greta:)


#12

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