How disabilities impact us?

[HappyLawyer]

ok, i was sitting here thinking, and i have concluded that i am in depression, not a medical professional but i have had it before so i kinda know what's going on with my body and moods, but here is the thing, how do we deal? My dtr has ADHD, i love her with all my heart and would give my life for her, but it can be difficult at times. Because of her behaviors it causes family members not to want to be bothered with her, how many of you have a family of kids that behave and there is one that does not, it hurts because the other kids, cousins, etc can go to the grandmas house for a few days and the parents get a breather, well not in my case. My older sister (she is loaded) has a big million dollar home, expensive cars and i can never let my dtr go over there unsupervised because of her impulsive behavior, as i type this my sister is having horses come to the house for my neices to ride on in the back yard and she took my dtr, i was suprised, she makes many comments about my dtr but i guess she does not hold things against her. Not many people understand ADHD and think the child is just being bad-

So dealing wiith her condition, my own medical conditions, work and yes about to take on the journey of another degree i am really in a rhutt! My work situation well it just sucks right now, am i have faith and i am trying to stay positive but i am an eater, so trying so hard not to fall into that pattern, but how do many of you keep your heads up. I cannot discuss this with my family, just not comfortable with that, but i am here, i know someone here knows what i am going through.

Talk to my ric sister about money problems, no i don't think so, my father is loaded but his philosophy is he had to make it work when he was gorwing up so i can do it to. I have a trust, but of course can't touch that until he dies- not in a rush for that to happen. I do not want to go on meds, i did prozac once -this was after a surgery went bad and something was left inside me, so i was pretty depressed about that, i a wheel chair for almost two years, i am not looking for ptiy or empathy i guess i wanted ideas and to vent. Any positive suggestions would be appreciated.

 

[Belle1962]

 

[tacomaranch]

Good Day Happy Lawyer,

I just wanted to say to you that you are great in first acknowledging you are sad right now. That says a lot about you. You obviously love your daughter very much and she must know that. I am sure she is a wonderful child. ADHD, Autism is so hard for others because they are invisable. The child looks great so it must be that we are just bad parents. NO! There is a disease, seen or unseen that makes life difficult. I do know. Please do exercise often, eat well, hug your daughter and the rest of them. Well, they are just uncomfortable with the situation and rather than do or say something they do nothing. If I could I would have your daughter over in a minute. We are use to having things dragged out only to be dropped and on to the next, the tantrums, the compulsion. We keep an active house and have a huge ranch. Today we are using the backhoe to do ditch work. Hunter only stayed on for a few minutes but he was outsde all morning.

My dear Happylawyer. Big hugs, please PM and we shall write. I do know what you are going thru.

April at Tacoma Ranch

 

[BeccaGrace]

No real suggestions beyond what the others suggested but here are more and a reminder to always count your blessings instead of looking at the negatives of a situation.

My dh and dd-3 both have seizure disorders...we had a crappy week neurologically this week...dh was seizure free for a year had one on Wednesday and my dd had just finished a month-long wean off Topamax this week and had a grand mal Thursday night. My dh was taking it pretty hard because things had been going well and now we are back to driving for him and getting Becca back on her meds and we just had to remember that while things might be harder for us than it is for someone without any medical issues to deal with that there is always someone that has it worse and you should be grateful that things aren't worse.

Another thing I strongly believe is that God doesn't give you anything you can't handle...a child with special needs is a gift given to those who are made with the extra patience, love and understanding needed to survive all the struggles...you have your daughter because God knew that she would grow from your love.

Kind of along the same lines of seeing the positive in things...my dh hates that we have to get up at 5 in the morning to take him to work but I'm actually happy to do it again because it gets the girls and I up and out the door in the morning, I get to shop at the Wegmans near his work, we get to go to a cool park nearby and we get lots of family bonding time in the car. It's silly stuff but it makes things easier to look at the fun stuff that comes with it than to focus on the fact that it's sometimes inconvenient.

I noticed you also said you are an eater, which I am guessing means you turn to food when you are stressed and upset. I'm the same way...I gained 50 pounds the last time we went through a medically stressful time as a family. I've lost 20 of the pounds but am now worried about stress-eating again...I am doing Weight Watchers and trying to concentrate on why I am eating and dealing with the feelings behind it rather than covering them with the food. I also try to walk to clear my head and exercise--it's very therapeutic for me. Venting on here or other message boards also helps when you need to get feelings out and don't want to burden your family.

I hope this helps...it actually helped me as well by writing things down.
Hugs to you and your family--good luck (with pursuing your new degree and everything else!)

 

[Rosie]

Hi Happy Lawyer

My Ds has ADD (so he sleeps - which is a blessing ) and Asperger Syndrome. I have tried to talk to family sometimes when I feel of wave of sadness sweeping over but like you I don't find it helpful, nor prozac.

Sometimes now I run until I hurt all over (slightly masochistic and not for everyone but it helps me to get really physically tired) Lately I have distracted and centred myself by zooming out and looking at my life dispassionately. I find it helpful to reflect on what it is to be a Human Being - the absurdities of our existence and why some situations cause us to hurt. I'm sure you already do this in your own way through study. Sometimes I just let go and become a kid again (if I'm allowed!) playing games and having fun and laughing at silly films with the kids. I dance around the kitchen to Green Day and swear along with Eminem.

Vent away and have a good gripe on here. I really hope it helps.

Rosie

 

[HappyLawyer]

Thanks, everyone, i woke up this morning and all i had to do was laugh, my dtr last night wanted to be near her mommy, but i was stressed and i did not want to take naythng out one her, yelling, etc, if i am streesed out she can do one little thing and it upsets me and frustrates me and i might raise my voice, so i told her mommy needed some alone time, so of couse as with any kid, she lfet me alone (for like 10 minutes) and she came back, she is on spring break so her meds had worn off and she became active and i told her to go back downstairs. I wake up this monring and i have compeny in my bed, i woke up as she was covering me up with the blanket, she looks at me, says good morning, get up, goes to the bathroom, comes back, gives me a hug, lays back down, covers up and goes back to sleep, i am watching her the entire time, thinking, and smiling, how did she and why is she still in her mommys bed,

I thank God for my blessings, and i know there are many in situations less fortunate then mine, so i am grateful.

 

[playwright]

Hi Happy Lawyer,
First of all - more hugs to you and your family. It is so hard. We have extended family members who shun DS14 and as a result shun my other kids as well. They all went to Disney over Easter break - without inviting us - and DS9 wanted to know why we weren't asked to join in the fun. (The bright side: I had less people to cook for at Easter dinner, lol) We are taking our own trip, but don't you think my kids would've had more fun hanging out with their cousins and being part of the "family" vacation? They did this last year, and I mentioned to SIL that "next time you guys plan a trip, we'd like to go along, count us in, my kids would have a great time with the cousins, etc." Am I being oversensitive? My shrink told me to just take a little yellow pill and everything will be fine. (now you know why I'm seeing a different shrink now) OK, so even if I'm in la-la land after taking medication, how will that make my kids feel better? What are people with NT kids who don't want to socialize with families who have children with disabilities teaching their kids? That we are better than them because they're not perfect like us? I don't get it. My kids hardly know their cousins, they see them once or twice a year, if that. They live a half hour away from us. I'm sorry to rant, but everything you talked about I can relate to and it just drives me batty, as you can tell. My MIL always talked about family sticking together, being close, blah, blah, blah, but I guess in some families (like ours) that closeness doesn't extend to family members with disabilities.

 

[playwright]

Hi Taco,
I've heard that we are bad parents. That I just need to "discipline" DS. That so and so are good parents because their kids don't have DS' problems. And on and on... Hugs.

 

[michelle9343]

Happylawyer
I felt like your were reading my mind. If I did not know better I would think I wrote the post. I wanted to send you a I want you to know that you are not alone. It seems like many of us are going through the same feelings. I know it doesn't make it better for you but I hope knowing that you are not alone helps a little. If you want to vent some more please PM me.

 

[bexareaglecheryl]

Sometimes you just have to vent - to someone anyone beause if you don't you'll explode.

My DD is ADD and my DH and I have been dealing with her issues for 18 years. She graduates from high school in about a month and we have been sweating it out. It seems as if the next problem is always around the corner with her. When you have a challenging child it can be very defeating beause no matter how hard you work and no matter how much love and attention you put into the problem it doesn't really 'go away'. You might resolve one problem/situation but that's only until the next one crops up (usually within a day or week, maybe a month!).

It is different with children who are ADD/ADHD. There is still that small part of you who holds them responsible for at least some of their ADD behavior. Phycially ill children can not be held accountable in any way. I'm not saying that it's better/worse, etc. Just different. Grandparents, family members, strangers, teachers, etc. hold you personally responsible for your child's emotional difficulties. Even when you know you're doing the best job humanly possible, it still takes a toll on you - physically and mentally.

Seek help if you can. My DH and I actually went to therapy together to better deal with our DD's difficulties and the stress it put on our family. It helped. But if you're depressed, get ye to a doctor who can treat depression. Your natural reserves have been depleted and God knows you need every bit of strength to deal with ANY children's issue.

 

[KathyRN137]

HappyLawyer:

From one "special" mother to another!

 

[SueM in MN]

Sometimes you just have to vent - to someone anyone beause if you don't you'll explode.

My youngest DD has cerebral palsy, so she does have physical things people can see.
But her bigger disabilites are actually due to her ADD and OCD issues. Right now, she's in her room, banging (literally) her computer keyboard on her desk. She wants something. Probably dropped a CD, because I can hear her ipod playing with the speaker, but she usually ALSO has a CD playing - LOUD.

Sometimes, life isn't fair. My younger DD should be getting ready to start her life as an adult, but she's going to remain a child. My forever child, and I love her, but she's not going to move on to the next step the way her sister did.

So, yeah. Sometimes you sit and cry.
Sometimes, the tears are happy tears, sometimes not.
Sometimes, you sit and scream.
And, sometimes you just sit.

But, you get thru it and go on. And, whatever hugs you get along the way, those help to make the going easier.


So, if you feel or
Stop and smell the
Sometimes treat yourself to a
and maybe a trip to see and
Come to the DIS when you
Let others to your
Get some , and
and hope you feel

 

[michelle9343]

My youngest DD has cerebral palsy, so she does have physical things people can see.
But her bigger disabilites are actually due to her ADD and OCD issues. Right now, she's in her room, banging (literally) her computer keyboard on her desk. She wants something. Probably dropped a CD, because I can hear her ipod playing with the speaker, but she usually ALSO has a CD playing - LOUD.

Sometimes, life isn't fair. My younger DD should be getting ready to start her life as an adult, but she's going to remain a child. My forever child, and I love her, but she's not going to move on to the next step the way her sister did.

So, yeah. Sometimes you sit and cry.
Sometimes, the tears are happy tears, sometimes not.
Sometimes, you sit and scream.
And, sometimes you just sit.

But, you get thru it and go on. And, whatever hugs you get along the way, those help to make the going easier.


So, if you feel or
Stop and smell the
Sometimes treat yourself to a
and maybe a trip to see and
Come to the DIS when you
Let others to your
Get some , and
and hope you feel

Sue
That was beautiful.

 

[SueM in MN]

Sue
That was beautiful.

Thank you.
It was inspired by everyone who wrote on this thread (and similar ones), so everyone had a hand in it.

 

[MommytoMJM]

I am glad this thread came back up....I've just had to make myself an appointment with a psychologist and psychiatrist becasue I have been becoming depressed for a while now about MJ's (and my own) issues... Like most of you some days are great and some just plain stink.

My husband has been promising to apply for SSI for MJ for a while now so that I didn't have to go through all of her issues with someone again (which ususally sends me into a tail spin if I have to) but he has delayed and delayed, so in tears last week I called and set up our phone interview for Monday (the 1st) I am really, depressed, frustrated and angry that I can't take care of my daughter without help from the government, but we are shelling out about 500 a month on prescriptions, 2 or 3 hundred on Dr's, etc... and we have gone through all of our savings.... and we just can't keep doing it anymore

I am so grateful to know that I cna dome here and have you all to talk to.

 

[SueM in MN]

I am really, depressed, frustrated and angry that I can't take care of my daughter without help from the government, but we are shelling out about 500 a month on prescriptions, 2 or 3 hundred on Dr's, etc... and we have gone through all of our savings.... and we just can't keep doing it anymore

If you haven't done so, you might want to explore what options are available since you adopted your DD.
I know people who have adopted children with disabilities and one of the "helps" that was available was Medical Assistance and some counseling for the child, no matter what the income of the adoptive parents were. The idea behind it was that it is more costly to the state if the child remained in foster care. If they had people who were willing to adopt, but could not pay for the care, extending benefits to parents who were willing to take on the challenge of adoption, was a win-win situation for the state, the child and the family.

 

[MommytoMJM]

If you haven't done so, you might want to explore what options are available since you adopted your DD.
I know people who have adopted children with disabilities and one of the "helps" that was available was Medical Assistance and some counseling for the child, no matter what the income of the adoptive parents were. The idea behind it was that it is more costly to the state if the child remained in foster care. If they had people who were willing to adopt, but could not pay for the care, extending benefits to parents who were willing to take on the challenge of adoption, was a win-win situation for the state, the child and the family.

Thanks Sue.... MJ was adopted privatley and the state of CA doesn't recognize AAP for SN kids if they aren't from the system (even though they are supposed to)...so no benefits... we started to fight it, but then moved here and couldn't fight the State supreme court of CA from FL At tleast the lady on the phone from SSI and MJ's dr's don't think we should have a problem getting that.

 

[SueM in MN]

Here are some resources you might want to check out:
North America Council on Adoptable Children. They are based in Minnesota, but are a resource for all of North America. Their goal is to get kids with special needs adopted, but also make sure parents have the resources they need to take of the children's needs.

Adopt America Network. They are mainly about getting kids hooked up with adoptive parents, but have lots of resources and might be able to help you or point you in a direction.

Association of Administrators of the Interstate Compact on Adoption and Medical Assistance (How's that for a name?). Here's contact information and a write up from another website of what their role is:
American Public Human Services Association
810 First Street NE
Suite 500
Washington, DC 20002-4267
Phone: (202) 682-0100
Fax: (202) 289-6555
Website: http://aaicama.aphsa.org
The Association of Administrators of the Interstate Compact on Adoption and Medical Assistance facilitates the administration of the ICAMA. The Compact is the legal mechanism by which member States regulate and coordinate the interstate delivery of services to children with special needs who are adopted pursuant to adoption assistance agreements. Along with advocating State participation in the ICAMA, the Association provides technical and legal assistance, education and training, and materials on practice and policy issues. This website is under construction, so some of the pages just have random words/letters as text. But there is a "Contact Us" link.
Florida and California are both members of the Interstate Compact, so hopefully this organization could point you to somewhere to help you sort things out.

good luck.

 

[treboats]

I know how you feel. I am currently pregnant so I think some of that has to do with my overwhelming feelings right now but I talked to my Dr and it made me feel much better I am currently seeing him 2x a month because he wants to see how I am feeling and wants to stay away from all medicine if possible. The thing that really sent me was my 17 month old is now passing up my 7 year old in abilities. and it's so hard. I mean of course I want him to be able to do all of those things but I feel so sorry for my other son.

 

[BlondeAlligator]

I know where you are coming from...

After trying for 2 years to get pregnant, I lost my first baby during the pregnancy. A few months later we were pregnant again, but things had changed for me. Because of the first loss, my doctors were ultra-careful with me. That combined with the fact that I never got an answer as to why the first child didn't make it caused me to become obsessed with my pregnancy. I worried over every litttle thing. My DD was born perfectly healthy, but my worrying continued and got worse and worse with each passing month. I started having panic attacks & finally went to get some help. I had developed trauma-induced OCD. Things were really hard for me...I had trouble just getting through each day & the minute my eyes would open I would start worrying. I started taking Lexapro & seeing a therapist...and eventually I got better.

This January I decided with my dr. that it was time to try to wean off of my meds. After a few weeks of success, I was feeling good & really proud of myself. Then the bomb dropped... my DD was diagnosed with Autism. I had had my suspisions for a long while that something wasn't quite right with her development, but my family dismissed me because they thought I was being my old OCD worrying self.

Well, I am back on my meds and doing better, but I had some really bad days in February & March where I would just wake up and cry. My DD is in a great early childhood program & getting speech therapy & we are lucky because she is very high functioning. But it's hard because just looking at her you'd never know anything was wrong. Sometimes she acts out in public & people give you "that look" & I just want to scream that it's not her fault & it's not my fault! All we can do is just focus on our child & forge ahead as best we can.

I try to take one day at a time. Some are good and some are bad. I didn't want to go back on my meds, but I knew that I had to in order to be my best for my DD & get her the help she needed.

The thing is, you need to get whatever help you can to make yourself feel the best you can. That may be therapy, or meds, or just finding some great friends who will support you like right here on the DIS. You need to do this to be the best Mom you can be to your beautiful childern.

Good luck to you & please feel free to PM me anytime.

Allison