How can I keep going?

by Rachel
(Eau Claire WI)

us three

us three

My daughter was labelled with SPD when she was almost 3, if I remember correctly. (it's so difficult to remember anything, nowadays. this has been extremely mentally taxing, as a single mother.) She's only 4 1/2, now... I can't figure this out. I need help. I feel like giving up, often. Her father is hardly available to help. I've asked the county to provide respite so I can get a mental break, but she seems to come home worse off. I also have a son(9 years old) with ADHD, or possible SPD(undiagnosed). I, myself may be an SPD adult(likely) and I AM LOSING MY MIND!!!!!!! WHERE IS THE RELIEF?


I can't really tell my "story" because today is not a good day. I can't get her to sit at the table and eat. My house is messy, cluttered, dishes, floors, cats, etc, etc, and so on... I. Don't. Know. What. To do. This should be some sort of success story but instead, perhaps it's a cry for help. (not that I believe anyone can take time from their precious days/hours/moments to actually DO anything for us..)

We don't have adult spd centers or therapy available in our area. I am on disability for anxiety and supposed depression. Hormonally, I am depressed about 3 days a month. Other than that, I can have panic attacks in social settings. Not that this is about me but I need help. Idk what to do, anymore. I keep going. And keep trying. And keep winging it. It's not working. It's not enough. I love my kids. I love myself. I love life and want to excel. I just don't know where to turn. My disability income isn't enough to support her needs and my son's needs and my own. I can't even afford clothes for myself, on disability. We are 3 special needs ppl under one roof, with no advocacy. With no one to come in and show me how to just be a person, in general. With no one to show me how to keep up with it all...

So, I guess that IS my story... :(

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Sep 12, 2012
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please take this away from me
by: Anonymous

today. i want to end it all. today. i just want my kids to have a family that can figure things out. today. i just want some relief. today. I need things to get better. when things are actually getting worse. my kids don't listen to me. i have no structure. today. i just want relief. today. i want to run from my family and not come back. today i just want my kids to be in a healthy place where everything makes sense. today i want to give them something better. well i have nothing better. my mental problems get worse and so do they. today i'd like to just stop trying anymore.

Aug 08, 2012
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Day by day
by: Momma's Babies KB&AB

Thank you, Pippamonium. I appreciate all of the encouragement.:) Some days are bad. Some days are really bad. Select few days can be good. I just wish there was a way for MYSELF to get the help I need. Basically to show me how to live as an adult, with SPD. I always felt different, you know. Sort of outcast. Then, I landed myself in jail for an extended period of time... When I got out, I couldn't even remember how to be a person.. :( And I've struggled ever since.. Take a wild animal and lock it in a cage for a year and then let it out:( No good... *sigh* I just keep hoping that some day it will kick in, how to be a person.. For my kids' sakes...

Jul 13, 2012
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I Feel For You
by: Pipamonium

In my household we have four people; my husband, me, and our two kids. I can't work but I can't get disability because I have no diagnosis yet that qualifies. My husband works full time and we're barley making ends meet. In my house I am ADHD with SPD's, plus anxiety like you described and other annoyances. Both of my kids have SPD's - practically opposites of each other (if my daughter is hypersensitive my son is hypo so there is always something going on to set one or the other off). We live in a tiny apartment and I constantly feel as if I'm going mad. When they started showing signs of SPD's I thought it would be easier for us because of my own problems, that I'd be able to handle it better and handle them better. Yeah... no.

I don't know what you've tried but two things I've done that have helped are: 1) joining a moms group at my church and 2) going to a site called 'meetup.com'. Both are free. The first one got me in touch with other moms with kids my age that could commiserate. Even if they didn't know what it was like taking care of a kid with an SPD let alone two they were still there to talk to. Plus I made some friends who were willing to take one or both kids for a play date. It allowed me some time to myself to recentre myself or to give my full attention to one or the other child. It has made ALL of us much happier. The second one allowed me to find groups in the area that I could fit into. It has been a great way to discover new places and things to do I might not have otherwise considered for outings.

Jun 21, 2012
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Encouragement
by: Rachel

The encouragement provided is wonderfully accepted!! Thank you for all of the thoughtful posts! There is a program called "family waiver program" and they said we didn't qualify. I am currently appealing their decision and also looking into other programs that can come into the home. Has anyone attempted applying for disability for their Sensory kids?

Jun 20, 2012
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Special Needs
by: Dani

Yes I agree...there should be some local services or groups that can help. i just found about a human resource group that is funded by the state. A mentor will come in 20 hrs a week to help with my dtg who is 5 with autism/spd and help with her goals. I knew they were out there, but until talking to a friend, also with a special needs child, I didn't know where to go. Look into social services in your area. If you were with the CDSA before your child turned 3, they should be able to point you in the right direction. Support groups online seem to help as well and can offer lots of information. Its never easy...but hang in there.

Jun 19, 2012
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A challenge to be sure.
by: Beth

I feel for you. Really I do. You are involved with a challenging journey. I said a similar thing to a girlfriend two weeks ago. She did nothing to help. People are overwhelmed with their stuff too. They don’t get it. I have it, my whole family of three, have it. I don’t even get it from day to day I have support from an agency. It is still a difficult road. Here in BC Canada they are involved in a teacher strike too, making thing more difficult.

A story to think on, in a plane the first thing they do is to show you what to do in case of an emergency.They show you the face masks; they say if you have children you put the mask on yourself first. You are no good for the kids if you pass out putting their mask on.

So why the story, you must put aside a little time somewhere for you to ground yourself through the day. Not TV. I do Art work. I journal so the stuff is not going around and around in my head. I also come up with some proactive ideas.Then you will have something to give to the kids. You can’t help the situation if you are scattered. Start with this, it will not change your challenges but it will help you cope .I wish you the best. Write in to here again. Keep us up on how things are.

Jun 19, 2012
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you can do it
by: Anonymous

dear i am so sorry you are having such a hard time...but you alone are doing all.....that is wonderful of you...having one special needs child is enoug but you are dealing with so much more...perhaps you could call a pastor or local church , maybe they have a mothers morning out...do you have any family to help???? contact you department of childrens services and look for any help, food stamps, medicaid, childcare programs...also know that God is always with you...when you do have a few moments, go to your knees and tell him you cant handle all this alone....please open a happy door somewhere....i promise you, he will help...you are an incredible mom...they will grow up, time will pass and they will know that throughout their life you stayed with them, you took care of them, and you will always be their incredible mom... you CAN do it!!!

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