Did you choose to be a SAHM with your special needs child? Thoughts on SSI, ASD parenting, and...

[mamakitsune]

I was just curious how  many moms here with children on the autism spectrum (or any dev/ other disability, really)stay home with their children, specifically school-aged, and if it was a choice regardless of their child's condition (because you are a SAHM with your other kids as well and it isn't based off of your child's ASD) or because you essentially have no other choice- there is too much work and not the right kind of care available for them for you to work a normal job. Right now my son just started kindergarten, and goes to IBI (which is about to shift into developmental therapy because his IBI is almost up) after, so he is "cared for" a large chunk of the day, but I also have a 3 month old so I am at home right now, and probably for certain until the baby is a toddler, if not longer. I also have another son and step son in kindergarten part days! 

I just applied for SSI for my son. He 6, is non-verbal, has pretty severe autism, and we meet the income requirements, and i was told he has a pretty good chance of getting SSI (I know other families in our area in similar situations who get SSI too). I did this in part because his condition and needs (therapy appointments etc) really do hinder me from getting a "normal" job. I know there is a chance he'll get turned down, but I am contemplating what direction to take if he does get approved. Or even if he doesn't, I still am considering the same things.

I guess I have this weird sense of guilt contemplating letting go of the thought of going back to work for some years. I know many moms choose to be SAHMs, as I am at the moment because I wanted to AND didn't really have a good option considering we have three in part-day kindergarten and a new baby! However, contemplating it long-term in regard to relying on state money and/or my partner's money is making me feel sheepish about it.  I know that is probably dumb, that's why I wanted to ask about other's experience/ lifestyle.

It just seems a little absurd for us to stick our baby and other children in extra child care before and after school, try to find some possible care situation for my son with asd (which is virtually impossible), and find a job... which would probably compromise ssi qualification and cost us a lot extra for having 4 kids in child care/ after school/ specialty programs! Regardless of getting ssi or not, I don't think both of us working full time is logical or healthy for our family... but in seeing that, I also realize that reality isn't about to change very soon. 

What do you do? How do you make it all work with a child on the spectrum?

[Linda on the move]

working vs non working is a tough question. There are some pretty big pros and cons on both sides.

My kids are now 14 and nearly 16, and my older DD is on the spectrum. I had a career before having kids, but my preference was to be a SAHM when they were young. I stayed home longer than a had intended to, and started working part time 2 years ago. I'm transitioning to more full time work now. I did go through a phase where I was ready to be back at work but being my DD's mother was still pretty much a full time job.  I'm currently loving having a life outside of my immediate family.

We would have been better off financially with me working, but honestly we are OK on one income. This is a very different part of the equation for different families. Not only are there the work related expenses with any job, there can be additional child care expenses for a special needs child.

At the same time, raising a child on the spectrum ( or with other special needs) can be draining and isolating. Some moms find relief in work -- even if it is part time. A chance to be around adults and do something that actually feels productive can add to mom's emotional health as well as to the family's bottom line.

As far as being sheepish about relying on SSI to stay home, it is in our entire society's best interest for your ASD child to get the best possible  therapies and interventions and interaction. While I cannot possible know if that will be easier to make happen if you aren't working, if in your best judgment it will be easier and better, then there is nothing to feel sheepish about. It's an investment for us all.

I really don't know how I would have done everything for my DD that I did if I had been working. I see other moms of special needs working and apparently doing a great job with everything.

My DH has been tremendously supportive, both of me being home for so long, and for me wanting to join the larger world. How does your partner feel?

If you need to bring in a little extra money, what about watching 1 additional baby during the day? Considering how much you'd spend on day care if you were  working, it might be a way to add cash without paying someone to watch your own children.
 

[mamarhu]

Exactly what Linda OTM said. As a single parent, I stayed home because of my child's needs, and received SSI. I don't know if it was the best decision financially (I supplemented it with various home businesses, and we did OK). But there were several years that it really wasn't optional - homeschooling was essential when anxiety kept YoungSon from leaving the house without me. Today, with the Dumplings 16 & 17, I work OTH full time, plus volunteer. I was pretty isolated while the kids were little, but I guess I am making up for lost time! Receiving SSI made all my kids (even the non-disabled ones) eligible for state health care, which made a huge difference. I don't know if that is true in all states.

If you are denied SSI, follow the appeal process. It is not uncommon to have a decision reversed on appeal. If I were you, I would probably stay home now while your other children need you also. It is not an irrevocable decision. A few years down the road, everyone's needs might be different.
 

[pattimomma]

Originally Posted by Linda on the move 

As far as being sheepish about relying on SSI to stay home, it is in our entire society's best interest for your ASD child to get the best possible  therapies and interventions and interaction. While I cannot possible know if that will be easier to make happen if you aren't working, if in your best judgment it will be easier and better, then there is nothing to feel sheepish about. It's an investment for us all.

                                                                                                   

I work full time and so did my husband until he lost his job two days ago. I would love for one of us to be able to stay home because it would make things so much easier with regard to therapy appointments and so forth. However financially it's a no go. Even with insurance through my employment we have huge medical bills (we are going to apply for Katie Beckett medicaid). If DH doesn't find work in the next couple of weeks we may have to apply for food stamps but I suspect I might make just a little over the income limit to get them. Social Services are  there for a reason and if you need them in order to care for your child then I say go ahead and don't feel ashamed!

[mamakitsune]

Linda- Thank you. I suppose some of my hesitations come from the fact that my partner is not my son's bio dad. I have joint custody, but have my son every weekday and have always completely handled ALL of my son's testing/ medical/ school/ therapy etc. His dad just doesn't partake. I also have him every other weekend, so the short answer is most of the time. However, the every-other weekend "off" (our new baby of course is with us all the time) is a time I see as an opportunity in the future to attempt more "part time" work- I do have an etsy shop and make some money from it, tho some months it is virtually nothing and some it is a few hundred. I have wanted to do our local farmer's market for some time, and might try that out next year if it seems like it could work. However, I realized recently with all the kids in part time school and a new baby I simply didn't have time to do EVERYTHING regarding my business, so I cut back on some of my products- the made to order, hand-dyed time consuming stuff- but that also cut sales down. 

I also considered watching another baby or two! I worked in early childhood for 10 years more or less, And I have actually been approached about it. Problem is, right now with the part-day kindergarten, kids going to two different schools across town from each other, therapy, and there already being 4 kids in my van that seats 5 kids most days... I would essentially have to cart the extra child around a lot and I don't think that would be fair for them :( I will definitely revisit that option next summer or school year  because the schedule won't be so complicated! 

Another part of me daydreams about being able to home school my other son who is in kindergarten- he is so bright, and I am really disappointed in our public school right now. If we had in place a plan to have me home indefinitely, I would really consider it.

I have been reading a lot about simple parenting, and simplifying our lives and materialism. I really think we could live on one income with some supplementary income and make our children's lives much less stressful and child/family centered. That always comes with a risk, if my husband loses his job etc- but he has worked freelance and with a company and has made about the same income either way, so he is pretty versatile. 

Thank you again- and pattimomma DEFINITELY apply for the Katie Beckett medicare! My brother had that growing up and I know it was a lifesaver for my parents! 

Edited by mamakitsune - 10/5/12 at 9:14am

[Peony]

My ASD is a preschooler and not severe. His therapy appointments, are a lot though. We take him to 10 hours a week of various things, all an hour a piece.  I feel like I live my life in the car. He is only 3 so I am not sure how much different it will look when he is older. I have not quit my job but I did go from 7 hours a week to about 2. I can't even handle the day a week right now! We are a family of 6, school is 20 minutes away each way for my older girls with no bus service so there are compounding factors that feel like it makes things harder at time. I only know one other family IRL with a ASD child, he is 10 and non-verbal. Mom does home daycare so that she is always available for him. 

[mamakitsune]

I already got a letter telling me to schedule my final interview with SS for SSI! They told me it would take up to 3 months or more just a few days ago after my long interview.... Wow. Fingers crossed :)

[heatherdeg]

I guess it WAS a choice but it didn't feel that way.  There was truly nowhere that could accommodate my son's whole little person at the time.

That was almost 5 years ago and I'm still home with him.  He's ADHD/Asperger's and really ahead in some areas, behind in others.  It still doesn't feel like a choice to be home for him but I don't feel trapped or resentful about it... kwim?  I do operate a business now and have two nights and a weekend morning plus a few odd-hours during the week dedicated to my business.  But I also meditate each morning and commune with other parents socially 2-4 times/month... and those are pretty huge, too.

It helps that my husband is fully supportive and we are on the same page about what is best for our kids.

I suspect I'll be home for several more years.  But my son is in a really good place.  We have life insurance that makes homeschooling an option if one (or both) of us suddenly disappears, but I feel strongly that at this point--the work we did while I was home with him have made it possible for him to enter school in a far less restrictive environment.

ETA:  My son also has an immune deficiency, multiple food intolerances (which are not treated the same as epi-pen allergies in most schools) and we're now seeing him crop up with what we think is an insulin-regulating problem (which is holy heck when it's bad :/) so between missing school for fighting off illness and being bounced into restrictive environments for behavior related to food... yeah... notsomuch a choice.

[~cassie~]

My son doesn't have autism but I did choose to stay home with him.  It was just necessary bc he needed extensive speech therapy(still does) plus many many appointments.  He is 5 now, doing so good, and I am just now back in school(have been for a year now).  BUT my husband actually does opposite shifts so that one of us is always here with them to cart them places.  Aidan now only has speech twice a week(private) and twice a week through school, and then my oldest just have play therapy once a week.  It's still a lot to get done between activities and homework, and my schedule, but we manage somehow :)  Oh and my son has been getting SSI since he was 6-9 mths and it certainly helps to pay some of the extra medical bills not picked up by Medicaid(he's automatically eligible for it and will be able to keep it for life IF he meets the income guidelines as he ages).

[DaughterOfKali]

My son is on the spectrum and also has an immune deficiency.  He misses far too much school due to illness for me to be able to hold a job (I tried.)  Although I work from home, I don't even have the time to do what's needed to really make money from it.  I'm currently homeschooling while we try to get an out of district placement for my son.

I will say that SSI doesn't pay much.  Plus, you have to keep tract of everything you use that money for (keep receipts) because they will constantly send you forms to fill out to verify how you spend the money.  

[Fay]

If you are denied SSI, you can immediately apply for the Katie Beckett Medicaid Waiver - google it.  The waiver will pay for most therapy, medical bills and respite.  Most states have a waiting list for the waiver, but it's worthwhile to get your child's name on the waiting list.

I've been a SAHM since my first child was born almost 12 years ago.  He had autistic symptoms from birth, and the demands at home have been too great for me to consider returning to work.  I volunteer a lot at school, and I'm working with another parent to start an ASD support group in our school district.  I have also found other activities as a creative outlet and intellectual stimulation - volunteering to teach adult education classes, writing articles about disabilities for a non-profit, learning about nutrition, etc. 

[mamakitsune]

Fay- My son already has some sort of specialized medicaid, I don't think it's Katie Beckett? It's kind of embarrassing that I'm not sure about it! His medicaid covers his IBI/ Dev. therapy, some speech/ OT, and covers normal childhood medical stuff. The only reason I am applying for SSI now is because I didn't know you could get it for autism until recently! 

I know I am getting ahead of myself a little, that's why I was asking what other did just to get a feel for what other people do... Some people I know who are in a similar financial situation as me have children who's SSI allotments are similar to what I'd make working part time! Or what I'd have left over working full time and paying for extra care for all my kids. I know the amount varies to do financial circumstance, So it could be almost nothing or a lot. I'm not officially married yet (next summer), so I'm not sure how they include his finances, though right not I hardly have an income at all- just etsy sales here and there. They took his info when I applied, so we shall see. Just not sure if it's different if he's my son's step dad.

I'm not happy with our school district right now- why do you have to wait, daughterofkali? I'm worried because there is a highly recommended classroom at ONE elementary school here that specializes in ASD, and it starts in the 1st grade (my son is in K). I was told if they write it into his IEP they have to make room for him- but wouldn't everyone know that and do that??  I just don't really like having him put in a classroom where there are ONLY kids with various disabilities, and nothing is specialized just for children with ASD. I am grateful we DO have programs, but I don't think it's the best thing for children on the spectrum. His Assistants in that class aren't trained much in ASD approaches either. However, I was trying to imagine homeschooling him and I'm not sure if that would be the best thing either- he does well working with other adults, and he butts head with me aster awhile on 'work'. He loves his IBI therapist (outside of school) and she wiill continue on as his developmental therapist when his IBI runs out :). I am also not impressed with the school system for our other boys- my stepson has "gotten in trouble" several times already, for not wanting to sit the whole time mostly. My NT son's school just got challenged by a group of parents who were against the special curricula his school used to promote critical thinking and global awareness, because it was "anti-america and anti-christian" (which of course, is NOT true)... And WON, so they pulled the program a month into school. Which lead me to discover we have an ultra conservative school board (which only happened recently, it used to be the opposite).  This is on top not liking public school already. Really hoping for an alternative.

[mopdop2000]

I originally chose to be a SAHM until my kiddos were in school, however that all changed when DS2 was diagnosed with Fragile X Syndrome, Autism and ADHD. He is in preschool now for maybe another year, whcih is half day. In terms of the $ side, we are so drowning in medical debt it isn't funny. He just got on Medicaid so going forward that will help, but we are still paying off other stuff. I do actually work 2 days a week at my dad's insurance company, but these are the days DH is off work, so DS is never in daycare ... which we be very hard to find for him anyway. As to your feeling of being dependent on the state, we are working through the same issue right now, b/c I could become certified as a CNA and then be paid for 2-3 hrs a day to be my son's home health aide. I am ok with it but DH is struggling with the gov't paying me to do what I do anyway. So, I understand what you are dealing with :)

[mamakitsune]

mopdop sorry to hear about your debt, I hope things get better for your family soon. In our state you can't get paid to be your own child's cna, unless they are an adult and become a ward of the state! It's kid of stupid, but Idaho is like that... It's a really big deal when your child is preschool/k aged and developmental school/ therapy does't cover the full range of "normal" working hours.  Normal preschools can't handle my son without an aide, I understand that. I also used to have issues with therapists calling in sick (I missed a lot of school and work) so I switched to a program where my son is covered no matter what. Best move ever.

[anj_rn]

I did not plan to be a SAHM, but after my DD's brain injury, she required full time care.  She gets homebound services from the school district, so a teacher comes out once a week (she is 3 and would otherwise go to PPCD for half a day, every day).  We have pvt Speech, OT, and PT sessions for a total of 8 appts a week.  We do not qualify for SSI, but she has MDCP (that is the name of the special medicaid or katie beckett mcd here).  We also can not get paid for taking care of our own child.

We do have nursing care hours, but we use most of them at night (so we can sleep).  I do some work from home, but I will not be able to go back to work full time in the foreseeable future.  I am thankful for the time with my kids though.  Life is precious, and we never know when they might leave us.

[MMMothering]

I would say that the question of whether or not to be a SAHM is very personal and there is no "right" or "wrong" answer. At the end of the day you have to do what works best for you and your family. A lot of people have already brought up some great points about this, so I am just going to offer another alternative that has been an absolute life-saver for my family. There's an au pair agency called ProAuPair that places special needs qualified au pairs (meaning that in addition to the usual qualifications, they have degrees and/or full-time work experience in fields like occupational therapy, pediatric nursing, etc.) that can work up to 45 hours per week for really reasonable costs. And unlike many nannies or babysitters, the cost is the same no matter how many children you have.

Au pairs can't replace other therapies or needed care but we have noticed a huge difference from having a live-in childcare provider with the education and experience to work with our special needs child day in and day out. She often practices her therapies with her at home and is just so much more patient and understanding of her needs than any childcare provider we've had in the past. The agency has put out a couple of videos from host families talking about their experience with special needs au pairs, which I think speak volumes. You can watch them at these links if you're interested:     http://www.youtube.com/watch?v=UDVsQSBbkDo&feature=plcp      http://www.youtube.com/watch?v=2hk6CwSlGEU&feature=plcp

Again, this is a really personal choice and at the end of the day every family has to make the decision for themselves. This is just one more option to consider that has allowed my husband and I to continue working full-time and feel really confident that our children are getting the personal care and attention they need.

Best of luck!

[Piglet68]

I chose to be a SAHM from the beginning, before I knew my kids had special needs (both on the autism spectrum). We also homeschool and that decision was made before I knew they were special needs (although we decided to do it b/c DD was having issues in preschool and decided she would be better off homeschooled). Looking back I believe it was the best decision for my kids, based on their particular issues and needs. But each kid is different and my kids' are fairly easy to handle at home, most of the time. I get respite when they go off with their different therapists (who pick them up from our home and drop them off again).

We are so fortunate to live in Canada where nobody racks up debt for having kids with special needs. All our kids' therapies are paid for through the system. It actually works out better that they are homeschooled because they get a lot of private services that kids in school would be doing in groups (eg. the OT comes to our home for one-on-one sessions, whereas in school she does groups of kids and can only see them about once a month or two as she does all the schools in our district). We also don't have health care costs related to employment, so that was not a factor in deciding whether me or DH would be the one to stay home. So the factors involved in our decision may be quite different than yours. I am very happy this way and wouldn't have it any other way. Yes, I was a professional and could have been earning a high income, but we are doing fine so far and I wouldn't trade this for more money.