This is a follow up to How you can help a special needs parent. It may to better to read the original prior to reading this one.
I know that my special needs family struggles many times and in many areas. I think that there are many special needs families out there, that are struggling for various reasons as well. In some cases we may need similar types of support. However, what my family may need could be very different from what your family may need.
I have written about this before but it was mostly from my perspective. You can read that here, if your interested. I think it’s important that others share the kinds of things that would help to improve their particular family’s lives. Let me say this, I have realized over the years that the Lost and Tired family struggles can be intimidating to many people, including family and friends. I think that people would like to help us but have no idea where to begin. I have actually had this conversation with a few people. They don’t know how they could help but they want to. Some people have informed me that they are afraid of offending us by offering help.
The truth of the matter is that I wish I could do this on my own. However, the reality of the situation is that our circumstances are so extreme, that no matter how hard I try, I can’t do this alone.
When I wrote How you can help a special needs parent, I was trying to address this issue by sharing simple ways that people could help a family facing struggles, like mine is. The suggestions I made were pretty universal I think, but they centered around my personal experience. I can’t speak for everyone, so I try to use my situation as a sort of guide for others to follow. With that said, I think we should share some ideas of ways we could help a special needs family.
I was thinking that it may be helpful to alot of people if we could all offer up ways that either people have helped or could help your family.
This could give some insight to those that may want to lend a hand to a special needs parent or family but don’t know how or what to do. I’m very aware how uncomfortable it can be to ask for help or to accept the help that is being offered.
Personally I don’t want to be a charity case but I more often than not find myself in way over my head and in desperate need of help. I know that at least some of you out there feel the same way.
So I want to create a dialogue about this very topic and I would love to get as many opinions as possible. This could be useful for many reasons not the least of which, is helping people understand how to help a special needs parent or family.
How can someone help your special needs family?
Please leave a comment about how someone could help your special needs family. Maybe it’s something someone has already done. The more ideas or experiences we can share, the easier it could be for someone to reach out and help a special needs parent or family they know. I think this is pretty important and something that is almost never talked about. There is nothing wrong with needing help and asking for it as well.
Sometimes a well timed phone call can help out more then anything else.
Please share how someone has, in the past, been able to help or what someone could do, to provide your special needs family some relief.
Let’s create a dialogue or discussion about this and help spread some ideas around.
In my experience, the best kind of help, is the kind you don’t have to ask for. BY helping people better understand the unique needs of your family, help that is actually….um…helpful, can be offered more often than asked for.
sorry lost and tired. i am over tired and at first i could only see the first 5 lines post. and reposted… please delete this post. as i tried to remember all i wrote… and DOUBLE POSTED… oops…
sorry double post confusion… delete one…. THX
dont know what happen to my whole post… it disappeared…
i wrote alot…
i hurt my back last year and took 4 months off work, then returned to work on a part time basis. (two days a week and call in when needed) and most days i work in pain and on pain killers. my husband works odd shifts (12 hr days, 12 hr nights) and although he has been laid off for the last 3 months i am so grateful to have him around (even tho the income SUCKS)
my son started ABA recently and i see all my hard work is paying off, i work tirelessly with him up til now and the team remarks on how bright he is even tho there are many areas of need. it has sorta lessened my load when it comes to the stress of teaching him the fundamentals, but up to now it was me teaching colors over and over as he would forget them soon after learning them. and i got him to count to 12, that was me. i taught him to dress himself and normal things that kids need to learn. i spent hours and hours just trying to get WORDS from him, and he speaks, and speaks well now (even despite failing hearing tests and seemingly is partially hearing impaired) the ABA is taking up where my hard work has left off, and give me about two hours a day four days a week where someone else is working with him in my place… (the rest of the hours he gets, i am involved with program planning and assessments)
SO…. what would i want….
i would want some sweet and understanding boy to come to the door and ask my son to play, my son is always left out when the giggling girlies run off to have fun
i want nosey people and jerks to mind their own business or go and read a book about autism and learn something, perhaps pick up some manners while they are at it…
i would love to not feel guilty about going to work, or to just not to have to go to work at all and be a SAHM that i am so good at… having to make excuses for dr appointments, specialist, back pain, ABA assessments, sickness….. all those things that make you call in sick to work just seem to make me feel soooooooo guilty like i owe my job something more than i can give. it isnt a good feeling when i dread gong to work and i also dread not going to work…
i wish i wasnt so angry at the outside world and all those "other things" that affect our family could be waved off with the brush of a hand.
i wish i had a new body, this old model hand me down is breaking down and i swear it is older than the 37 years printed on my birth cert.
and mostly i want to THANK my husband. he has been great. he does dishes and tends to kids when i am too sore to get off the bed, he gets them dressed and although he cant brush a girls hair to save a life, he does his best. he helps out around the house more than i do and brings me coffee in bed on those bad days. i am so lucky to have him. i am scared to death what i will do when he goes back to work in TWO WEEKS…. what will i do when i am too sore? (sucks back tears) i am terrified that i cant do it alone what i have been doing all along, and i am afraid that the pain will just continue to get worse and worse and that i am failing my family… I CANT i just must push through
Like all parents that delight in successes of "normal" 5 year old children i see my daughter doing "normal" things, she has a best friend, she is eager to learn to read, she wants to print, she asks questions, she is cute, sweet, caring, opinionated, bossy, and independent all at the same time… and while i smile at her, her twin brother (ASD) struggles, i spend time trying to teach him his pincher grasp over and over and he hates to print or even attempt letter. he learns fast but also forgets jsut as quickly… he struggles with emotions, has trouble reading social cues, doesnt grasp the idea of a best friend, and even tho we read and point to the words of a book over and over her memorizes the story and parrots it back but can not define a single word when pointed to. can only recognize his first name in print and can only count to 12… (counting to 30 is the range they expect in kindergarten and most of his peers can do that)
BUT i am proud of him… he does have a great memory, is great at puzzles, has great attention to details, he is sweet and charming and wonderful, he give great hugs (but refuses kisses and doesnt like to be touched by people outside the family) he has a long attention span and is very laid back. Now that he has started ABA he seems to be catching on to tasks quite easily… however…
in the last year i injured my back, took time of work, after 4 months, i returned to work on a part time basis, only two days a week. my husband works odd shifts (12 hour days, 12 hour nights) and i often find i am frustrated with having to go to work IN PAIN and having to give reasons why i cant work certain days. specialist, dr appointments, weekly ABA assessments, my back pain…. well the list goes on…. and i feel like i am working myself into the grave and for what….. i pour all my energy into my son and i know i want to, and need to do that…. but when i have to shower and go to work, i hate to leave the house. i ache and i am heartsick i DO NOT want to leave the twins with baby sitters. hubby was laid off for last 3 months and although the income SUCKS………. i am grateful that he has been around.
so what do I WANT…..
i want some little boy with a big heart and a patient mind to come and ask my son to play. he often gets left out when "the girlies" run off to play together…
i want to not have to feel guilty about going to work, OR just to not to have to go to work at all, so i can be that SAHM. cause that is the full time job i do best…
i want to not feel so angry at the world for the other things (outside of our family) that interfere on a daily basis
i want nosey people and jerks to mind their own business or go read a book about autism and learn something …
i wish i had a NEW body, cause this old hand me down is breaking down and i am an old lady pretending to be the age of 37 that my birth certificate says… i ache too much for any 37 year old i ever met….
mostly i want to THANK my husband for he is the BEST i could ever ask for. he does dishes when i am aching and cant get off the bed, he brings me coffee in bed on those bad days and dresses the kids and tends to their needs and the house… THANK GOD… but days when he works… scare the hell out of me. WHAT will i do when i need him and he isnt here… i am so scared he starts back to work in two weeks. and i dont know how i will handle daily things without him around. i just hurt more days than i dont… (tears up now) i just cant fail my family… i have to just PUSH through
Just for starters…get to KNOW us! Please, people, do not be afraid that our children are autism carriers and will infect your children! If people would just take the time to get to know a family with a special needs kiddo—and witness their lives first-hand, they may have a glimmer of understanding for us.
My recent post Entry Fifty:The…Trickle…Down…Effect…of …Autism
Listen. Really listen. Stop rushing in with your stories of how someone else turned out just fine with different circumstances, how I am wrong, how another "cure" is just around the corner. I don't need that, I need someone to let me vent and not judge me. I would love some help from time to time, but I have long since realized that isn't forthcoming. Just hold the phone or your mouse and let me go for a few minutes.
I KNOW what you mean…..
i hate when people say things like "he looks fine" or "he looks normal" or "he is doing great isnt he" or "but his twin sister is…." or "my friend tried this…."
or "IF I WERE YOU…." that last one makes me wanna smack people….. cause if YOU were me and i was you…. i would just kick myself and hard… cause what kind of idiot do you think i am thatin the last 5 years, i havent tried EVERYTHING that you in your wonderful perfect world with "normal" kids has tried… i didnt just BUY this boy yesterday. i have had him since his birth …
one lady once told me. "what, you are paying that for strawberries? if i was you i would give him what i was serving and say EAT it or eat nothing…" well i am glad YOU are not the one raising my son with sensory issues. he just CANT eat anything he gags on most foods. if you were his mother i cant imagine how skinny and hungry he would be…. and if i pay $7 for strawberries as it is the only healthy thing he eats…. then i will… excuse me if you feed your kids what is cheap and on sale and then go spend $7 on coffee instead…
some people need to shut up, or go read a book on autism and stop giving bad advice where no advice was wanted.
In regards to how someone has helped my family, I would like to say this…. My employer has given me near absolute freedom with my work schedule. With tough economic times, it is a huge blessing that I have the job I have. This "benefit" has been the most valuable help my family has received. It has allowed my to attend all my child's clinic and specialty appointments and take some extra time to assist my wife (the most dedicated stay-at-home mom). We have also received help from my mother. She has agreed to bring our kindergartner to school in the morning. This allows me to start work early enough to get a full day and be able to pick up our kindergartner when school us done.
Without this assistance I feel my family would not be as cohesive as we are. Though not a day goes by when my wife and I find ouself questioning our ability to keep doing what is needed for our autistic child and our other son who has had to grow up much to quickly to naturally accommodate his young brother.
Regardless of "the hand we were dealt" I couldn't be more happy and amazed with my wife and two boys. Sure people snicker, gawk, and mutter ignorant comments (we've all experienced this). But when we take the time to sit back and look at our accomplishments, it's finally obvious, Family's of Special Needs Children are unique, strong, and utterly impressive! Kudos to all of you, and yes, pat yourself on the back. We can give ouself that credit.
Andrew: I think you hit the nail on the head. Employer understanding and flexibility would go a loooooooooong way toward helping special needs' families stabilize their existence. Sadly, many very well educated parents are jobless because they can not find a well-paying job with an autism-friendly schedule.
My recent post Entry Fifty:The…Trickle…Down…Effect…of …Autism
I'd just like you (the universal you) to realize that when I turn down an invitation, it's very likely because my kid just can't handle a big event, or I don't have the energy to figure out how to get someone who truly can watch my kid so that I can go out with you. This makes me a natural hermit. I don't necessarily choose being a hermit, but a lot of times, it's just easier. Don't make fun or give me grief if I turn down your invite. Instead, call me on the phone and chat about nothing important to give me a break. Understand that I'm not avoiding you, and I'm not (necessarily) depressed. I just can't manage the logistics.
My recent post Every Day, I Think About Kelly
Again, when I get on my pity party parade….. I remind my self… yea so we have not had alone time in a long time… but look at all the progress my special need daughter has made over these last years, even just the last 6 months. Some days I would not miss being with her for the world….. others… like I said I just want to melt away.
I again hope you understand all of this. Some people would freak if they heard what I am sharing with you. Any advice you have I would so much appreciate.
Wow. You have quite a bit pinned up. I\’m totally honored that you shared that here.
I feel your frustration and exhaustion. I\’m in a similar boat as well. I became a stay at home dad about 5 years ago when my wife\’s health took a turn. I have 3 boys on the spectrum and a wife with chronic health issues. For years people would tell me to go. Ack to work. I was like, don\’t you think I want to. Do you think this is fun for me?
I hate struggling. I have the stress associated with living without a stable income.
Some people will just never get it. They don\’t understand that sometimes being a special needs parent is more than a full time job, all by itself.
The truth is that most people simply couldn\’t do what we are doing and therefore, just can\’t understand.
You just stay strong and I would suggest you join our special needs parenting support group. Just follow the link at the top of the page.
Best of luck to you. Your welcome to vent here anytime you would like to.
So sooo SOOO many times I feel incredible alone in "our world" I feel as if I am not GRATEFUL enough for all we do have. Its such a catch 22. I AM grateful, and I do feel blessed, but this dark cloud is always over my head and with everything else that I have to manage to care not just for my special needs daughter, but for her sister as well, gets so extremely overwhelming that some days I wish I could just go into a closet and melt away and just not think about all I have to.I feel so incredible blessed to have my girls, to have a wonderful husband, but the financial burden is soo sooo hard to work thru. When we hear of people, especially family brag about their vacations and the amount to vacations they go on… all we do is just smile. My husband and I have not had time away in 4 years, just to decompress.
Some times I am living off of fumes and I still find a way to push thru each day. Even when everyone around me abandons me when we are all get sick…. I still push thru it.
As much as I would LOVE to get a full time job and bring in a steady financial income that just is not going to be just a wash…. is just not realistic. I am made to feel like I am a lazy and unappreciative person. It is devastating to me and I am having such a hard time trying to figure this all out and try to find a way for this to work.
Gosh…. I hope this makes sense??? I hope you see where I am coming from and if you see it any differently, because we are so similar in our situations, please give me your honest opinion.
I would have to have a full time and good paying job. Also, I would still have to manage all of Sarah's care from a far and make manage all that take care of her from a far. I would have to miss work due to her home providers, calling in and missing work, or when my husbands gets called out of town for work or when she gets sick. These are reasons, not EXCUESES that I have lived with for 8 years. I feel like no matter how I approach this and express this to anyone in our family, its dismissed as if I am just unwilling to work, like a lazy and sit around all day watching tv and eating bon bons.
I am NOT like that at all. Every bit of who I am, all ounce of my energy, my heart and my soul goes into my kids each and every single day.
I feel like I am in such a rock and a hard place. Our family that has been so gracious to us, is the same family that daily insists me to find a "job". I would have to bring in my self alone around 3 times the amount of money needed to just get by…. just to make it work. Double of what SSI sends to my daughter when they do send out her check, just to make is a wash and to make double what the family helps us with. My husband is working, but his hours are reduced drastically and some days is not working at all. My daughters SSI has been such a life saver, though not much, but the past 6 months they have screwed us soo bad that things are starting to really snowball. I have letters out to our senator and I hope that will get some fire under them.
As you know, a special needs child requires you to be on your toes at a drop of a hat, at a moments notice, you have to drop all your doing to pick them up from school if they get sick, or if other kids are sick, she has to come home, if they have appointments with specialists and they take several hours, when you have therapists come to your home, when your child is 100% dependant on total care and needs eyes on her all the time…. and it goes on and on.
Helping my kid socialize. Have your kids play with my kids, your nieces and nephews, a neighbor, SOMETHING, ANYTHING.
I'd kill for a new laptop, no strings attached. I work from home and it would be so much easier to have something that I can carry with me into every room, especially at night. For some people that doesn't seem like a big expense or a big help, until you realize there's one person bringing in the bulk of the income for 8 people. Everything I make goes to bill or food, nothing left over for even a used laptop – better access/flexibility would increase my productivity which in turn increases what I can do for my family. I can rest when I'm dead.