I Don't Like My Kids

[ondreeuh]

I think what you are feeling is a normal survival mechanism, but I would be concerned about it nevertheless. I have seen kids develop attachment issues from having parents who endurenthem but do not celebrate them.

 

I would look into ABA, respite care, whatever it takes. Does your 3 yr old qualify for Head Start? They usually provide bussing. If you could find someone to take your 3 yr old to preschool, it would probably do him a lot of good to be around typical peers who aren't so difficult.

[goldberry]

Your kids are still really young. I think a lot of people idealize the early years. We have this image of parenting the young ones as being "wondertime" and the most special time and so forth. But for many parents, the special times are later...  

 

This is so true!  I have one neurotypical healthy kid, and I was so down when she was a baby/toddler because I didn't enjoy it.  I kept thinking I should.  But I didn't.  Turns out I just like them older!

 

It sounds like you are bearing a very large load and I would say you are doing a great job to just survive.  Sometimes just surviving is an accomplishment.

 

:grouphug:

[PeterPan]

It probably does make sense on some level to put my oldest in school, but he really, really doesn't want to go and I understand why.  We tried putting him in preschool and it was a disaster.  He does short days camps every summer and even being with the other kids for a couple hours is more than he can tolerate.  He currently is in two gym classes a week and he struggles every minute trying to figure out what he is supposed to be doing, how to over come his anxiety, how to relate to the other kids, etc.  He is so incredibly gifted, and I would feel horrible putting him in a school setting where he felt overwhelmed mentally, alone or even bullied emotionally and unchallenged academically.  Right now our school time at home is a very positive experience for him and he gets to retreat and recharge during the rest of the day with hours of reading and playing legos.  We're not ready to take that from him.

 

 

Until you get an IEP made from the school, you wouldn't know his placement.  I would suggest you start there, getting an advocate, getting the absolute best IEP you can for him, then decide if it's an acceptable placement.  I can tell you that for my ds, who is very similar to your ds (possibly even more functional, but also gifted), he would not be mainstreamed.  My ds has an IEP, which he needed to get our state disability scholarship, so I know what he would get if I enrolled him.  And even though they don't HAVE to do the IEP before you enroll, you could probably work something out, like maybe cutting a deal where he doesn't even begin in a mainstreamed setting but begins in a specialized classroom or with an aide.  There's a lot the school COULD do.

 

You didn't like my comment about sports in the other thread, but I'll point it out here again.  Sports are where the social thinking weaknesses come up.  If he's not getting ABA in the home and he's not getting intervention at school, he's not getting the intervention, meaning these are hurdles he's not getting over.  The school would do it with aides, social thinking instruction, etc.  They have tons of support they can offer, if you bring in advocates, if you fight for it, if you win.  Or you can bring an ABA team into the home.

[PeterPan]

It was kind of awful, but also really, really true.

 

This house often sounds like a horrible Hollywood portrayal of an insane asylum.  Just constant screaming, wailing, bellowing in anguish and frustration.

 

My parents took my 5 year old for a couple days last month and they said that during some of his hours-long screaming jags they ended up sitting with him outside.  Not because that would stop the screaming, but just because it didn't grate on the nerves quite as much if it wasn't echoing off the walls.

 

My mom said she worried that someone would call the police about all the screaming.  I laughed and laughed because that is no longer anything I worry about.  I have fantasies about the police showing up - "Ma'am, you are not fit to parent this child."  "I agree completely, Officer, here he is, good luck."  Okay, so that isn't exactly how it would happen, but I still dream about how quiet the house would be after they "rescued" him from my care.

 

Wendy

 

I can tell you that's when I finally got traction with the school, when I told them I was concerned about how the police were going to respond.  You should have an ABA team in the home helping you or they should be enrolled.  It is outrageous that you are dealing with this level of challenging behavior alone.  It's not good for you, for the siblings, or for the dc with the disabilities.  It becomes engrained habits of behavior and communication with the dc, and it's stressful to the siblings.

 

Ironically, in our state you get MORE funding and MORE access if you are low income.  You put your kids on the state children's medicaid, and they have access to ABA, OT, everything.  It's only middle class people, people with more money who have less access.  

[PeterPan]

Does your state have autism charter schools?  Our state has lots of them (yes, lots).  You might consider moving to a place with a strong autism charter school program.  Even if it took you a year or two to effect the move, the level of support you'd receive once you got here would be worth the effort. The schools are set up to handle level 1-3 autism, with giftedness, in small, compassionate settings.  The state offers disability scholarships that pay the cost.

Edited October 17, 2016 by OhElizabeth

[Guest]

I can tell you that's when I finally got traction with the school, when I told them I was concerned about how the police were going to respond. You should have an ABA team in the home helping you or they should be enrolled. It is outrageous that you are dealing with this level of challenging behavior alone. It's not good for you, for the siblings, or for the dc with the disabilities. It becomes engrained habits of behavior and communication with the dc, and it's stressful to the siblings.

 

Ironically, in our state you get MORE funding and MORE access if you are low income. You put your kids on the state children's medicaid, and they have access to ABA, OT, everything. It's only middle class people, people with more money who have less access.

That's true here as well.

 

My friend has one disabled son and seven neurotypical children. I asked her shortly after we met why she chose the local school over homeschooling him and she smiled at me, shrugged, and said she could spend her day teaching him or teaching the other seven children. They had one of the best schools in the area an 1/8 of a mile from their front door and he gets one on one attention from skilled, trained staff. For their family it has been an immense blessing and frees her up some hours of the day to parent 'normally' and even get some breaks since her NT kids are now the leer and somewhat independent.

[mamiof5]

My heart goes out for you. Please, please find a way to have some alone time. Can family come help dh? A friend? Someone? You are incredibly strong to deal with all of it, and I admire your strength, but you can only do so much. Your family has talked about it, they have seen it. Your dh can't be with them by himself. Why are you expected to deal with it alone? You really need a weekly (ideally) break from it all, from the screaming, the yelling, the chaos. Everyone gets a chance to be away from it, you don't. It's not healthy for you :(

[wendyroo]

I can tell you that's when I finally got traction with the school, when I told them I was concerned about how the police were going to respond.  You should have an ABA team in the home helping you or they should be enrolled.  It is outrageous that you are dealing with this level of challenging behavior alone.  It's not good for you, for the siblings, or for the dc with the disabilities.  It becomes engrained habits of behavior and communication with the dc, and it's stressful to the siblings.

 

Ironically, in our state you get MORE funding and MORE access if you are low income.  You put your kids on the state children's medicaid, and they have access to ABA, OT, everything.  It's only middle class people, people with more money who have less access.  

 

Fortunately or unfortunately, we are firmly middle class, edging toward upper middle class.  We have a "good" high deductible insurance plan.

 

We pay, out of pocket, $100 once a month for a 15 minute med check with the psychiatrist in order to get a refill of DS's prescription.  Every 3-6 months we have to additionally pay $250 for a consultation appointment with the psych.  We pay $100 a week for a 45 minute therapy session for DS.  We pay about $50 a months for his medications.  When we looked into ABA, it was going to be a $100 copay each time they walked in the door.  We also pay $50/kid/week for speech therapy (which is a steal); up until last year all three boys were in speech, now it is just the younger two, but all signs point to the baby needing to start in the next year.

 

Our mental health coverage, which is considered good by industry standards, only has individual deductibles, not a family one.  We hit DS's mental health deductible every fall and then "only" have to pay 20% of the costs for the final months of the year before we start the cycle all over again.

 

I think we firmly fall into the "less access" side of things.

 

Wendy

[MedicMom]

I can tell you that's when I finally got traction with the school, when I told them I was concerned about how the police were going to respond. You should have an ABA team in the home helping you or they should be enrolled. It is outrageous that you are dealing with this level of challenging behavior alone. It's not good for you, for the siblings, or for the dc with the disabilities. It becomes engrained habits of behavior and communication with the dc, and it's stressful to the siblings.

 

Ironically, in our state you get MORE funding and MORE access if you are low income. You put your kids on the state children's medicaid, and they have access to ABA, OT, everything. It's only middle class people, people with more money who have less access.

Same in our state. Our insurance refuses to cover anything because they state he's too high functioning. At school he's in an inclusion classroom and gets mental health counseling but didn't qualify for anything else. I am trying to get him qualified through the office of developmental disabilities, but my intake worked told me it's a long shot.

 

It's all so frustrating. I think ABA would really help, but we can't get it.

[ktgrok]

For the record, I think every parent of a child on the spectrum has googled boarding schools at least once. I know I have. 

[prairiewindmomma]

I discovered a fallacy in my own thinking a few years ago.  I thought that I had to do it all, and that I had no other choices.

 

In reality, the very vast majority of parents send their kids to school....kids with cancer, kids with j-tubes, kids with anaphylactic allergies, kids with ODD/ADD/OCD and every other alphabet soup combination under the sun.  They aren't "giving up" on their kids; they are doing what they need to survive over the long term.

 

What you are doing right now isn't working in a long-term way for your family on a number of fronts.  No one else is there advocating for you. Even if school is just respite time for you, I'd go for it, for a season.  The majority of my SN family friends who have sent kids to school have kept their kids their long-term and have realized, on the whole, that healthier family dynamics made up for less than ideal academia.

[Janeway]

I would send the older ones to public school for a while and focus on the youngers.

 

I actually do that in fact. If I do not like their behavior at home, they can go to school until they are where I want to deal with whatever. I think you should do this. It does not have to be permanent and it does not have to be both the older kids. 

Edited October 17, 2016 by Janeway

[City Mouse]

Fortunately or unfortunately, we are firmly middle class, edging toward upper middle class. We have a "good" high deductible insurance plan.

 

We pay, out of pocket, $100 once a month for a 15 minute med check with the psychiatrist in order to get a refill of DS's prescription. Every 3-6 months we have to additionally pay $250 for a consultation appointment with the psych. We pay $100 a week for a 45 minute therapy session for DS. We pay about $50 a months for his medications. When we looked into ABA, it was going to be a $100 copay each time they walked in the door. We also pay $50/kid/week for speech therapy (which is a steal); up until last year all three boys were in speech, now it is just the younger two, but all signs point to the baby needing to start in the next year.

 

Our mental health coverage, which is considered good by industry standards, only has individual deductibles, not a family one. We hit DS's mental health deductible every fall and then "only" have to pay 20% of the costs for the final months of the year before we start the cycle all over again.

 

I think we firmly fall into the "less access" side of things.

 

Wendy

Have you looked at the school of speech services? Some states will let kids be enrolled for "speech only" which would start at 3 DS old. If the baby needs services, you can check with your local early intervention program. Either the school district or your dr ought to be able to give you the phone number. Even if you could free up just the money you spent on speech services, maybe that would leave enough for a counselor or other support for yourself.

[wendyroo]

Have you looked at the school of speech services? Some states will let kids be enrolled for "speech only" which would start at 3 DS old. If the baby needs services, you can check with your local early intervention program. Either the school district or your dr ought to be able to give you the phone number. Even if you could free up just the money you spent on speech services, maybe that would leave enough for a counselor or other support for yourself.

 

My oldest started with early intervention for speech therapy at 18 months.  It wasn't great, but it was fine.  At 3 he moved to the elementary school and suddenly he was only eligible for 25 minutes once a week (36 weeks a year) paired with another student who may or may not be working on the same speech skills.  Plus his assigned speech therapist was very resistant to working on DS's IEP goals.

 

The icing on the cake was that during the 25 minute therapy I was stuck in the school office (not allowed to leave the building) with a toddler and a baby.  The third week in a row that the principal came out to reprimand me for letting the kids (2 months and 28 months) be too loud, despite clearly being able to see me trying everything I could to quiet them down, I called it quits and found a private speech therapy option...which also ended up being 100 times better and more effective.

 

Wendy

[Lecka]

I am also so impressed by you.

 

I wonder if your 7-year-old might have a better experience in school with supports? Maybe he could have time in a quiet space or various things like that.

 

You don't have to think he would go in and get no supports.

 

Maybe it would not be good, maybe it would.

 

Some kids just have a hard time being away from home, too, but some kids can like school even when they get overwhelmed and need quiet if there are supports for that available.

 

Both my sons go into a resource room at various times, and they are very different, but they are both pleasant places where my kids feel comfortable.

 

I am not saying it is perfect, just that with supports it might seem like a possibility.

[Lecka]

I am just mentioning this as something people do sometimes... move for better services. Whether that is school or insurance coverage or respite services. A short distance can make a big difference sometimes.

[JFSinIL]

I have one special needs "child" (ok, he and his fraternal twin are 25 now) and back in the day there was only ONE year I had all four kids homeschooling (the "girls" are now almost 23 and 20 so this was eons ago).  Special needs boy had to go back into public school system so I could give attention to and homeschool the other three  (we also had an ABA program for three years, I spend hours everyday preparing flashcards, etc. for the therapists (homeschool teens we had trained by ABA professional) to use.)

 

Your situation, you need respite.  Putting the older two into the local school system will at the very least give you a few hours each weekday to be mom to the other two kids.  Give it a few weeks, and the school staff may well be helpful in finding you after hours or weekend respite help, too. The older two qualify for an IEP and the school district HAS to take them.  If they need speech, it has to be provided during the school day while they are there.  Also OT if needed. http://wrightslaw.com/ has tons of info on how to get your kids what they need from the local school system.  If the schools can't meet their needs, the school has to pay for private placement.

 

 

You can not continue to do everything by yourself.  You will be broken. 

Edited October 17, 2016 by JFSinIL

[wendyroo]

I am also so impressed by you.

 

I wonder if your 7-year-old might have a better experience in school with supports? Maybe he could have time in a quiet space or various things like that.

 

You don't have to think he would go in and get no supports.

 

Maybe it would not be good, maybe it would.

 

Some kids just have a hard time being away from home, too, but some kids can like school even when they get overwhelmed and need quiet if there are supports for that available.

 

Both my sons go into a resource room at various times, and they are very different, but they are both pleasant places where my kids feel comfortable.

 

I am not saying it is perfect, just that with supports it might seem like a possibility.

 

I definitely know that there are schools that provide great special ed services.

There are a few reasons I doubt ours is one of them.

 

DS had an IEP (for speech services) when he started in the public school preschool program.  He entered the program with strongly worded letters from his therapist, psychiatrist and behavioral pediatrician saying he needed interventions and may benefit from the special ed preschool.  The school district refused to put him in the special ed preschool until he was shown incapable of handling the normal program.  They swore up and down that in the normal preschool they would 1) get him to speech therapy (they were housed in the elementary building) during preschool hours, 2) provide supports and accommodations and 3) do assessments to see if his IEP needed to be amended to include behavioral services.

 

After 6 months, they had gotten him to speech therapy a little less than 50% of the weeks...and has obfuscated a bit when discussing it with me to make it seem like he had gone when he really hadn't.  They had provided no supports and had actually told me it was normal that he was being bullied and hit every day.  And the "testing" had come back showing that he was too high functioning for any services, even though I was being called to pick him up at least once a week (out of three class days) when he wouldn't stop crying during class.

 

I have spoken to many, many homeschool parents from our area that have very similar stories.  Ours is a fairly affluent district, but from all accounts, it does not serve the special ed population well.  It also isn't very strong on gifted ed.  I toured our local elementary and all they offer is in-class differentiation.  DS is working 3+ grade levels ahead in most subjects, but still leaves the room when I read the other children a "scary" book like Clifford the Big Red Dog.  I highly doubt either a mainstream class with an aide or a special ed room would be able to meet both his emotional and academic needs.

 

Lastly, DS doesn't want to go.  Emphatically doesn't want to go.  Of course, that is not the end all be all, and I would attempt to force him to go if I thought it was the right answer, but since DH and I feel there is a high likelihood it would do more harm than good, and since his schooling is going very well at home, at this point public school is off the table.

 

Wendy

[maize]

We tried the district preschool with an IEP for ds4 last year and had an experience not too different from yours--including only rarely actually getting speech services. I pulled him out in January.

 

This year he is at a private Montessori preschool and is thriving. The school and teacher just clicked for him--he behaves much better there than at home.

 

I don't have a clue yet what we will do with him next year. There is a charter school geared towards autism spectrum kids but it is 45 minutes away.

[Rachel]

Wendy, I'm so sorry! I have no advice but I appreciate your courage in sharing.

 

Is there possibly a support group in your area with other moms you could at least call for encouragement?

[wendyroo]

We tried the district preschool with an IEP for ds4 last year and had an experience not too different from yours--including only rarely actually getting speech services. I pulled him out in January.

 

This year he is at a private Montessori preschool and is thriving. The school and teacher just clicked for him--he behaves much better there than at home.

 

I don't have a clue yet what we will do with him next year. There is a charter school geared towards autism spectrum kids but it is 45 minutes away.

 

Our closest Montessori is 45 minutes away...and, of course, $$$.

 

There are no autism-specific schools anywhere near us and I have yet to find any social skills classes or other resources either.

 

I just don't understand.  We live in a thriving, family-friendly area.  There are new parks, schools, libraries, nature trails, YMCAs, private extracurricular facilities, etc being built every year.  And yet special needs services are pretty much non-existent.

 

Wendy

[treestarfae]

Create a reward system of who is behaving. write down exactly how many times each one screams, hits etc and reward who works towards better behavior. review it at the end of the day with your husband and kids so you can both be involved with behavior. This behavior needs careful attention in a structured way. Keep a notepad handy.

[PeterPan]

Fortunately or unfortunately, we are firmly middle class, edging toward upper middle class.  We have a "good" high deductible insurance plan.

 

We pay, out of pocket, $100 once a month for a 15 minute med check with the psychiatrist in order to get a refill of DS's prescription.  Every 3-6 months we have to additionally pay $250 for a consultation appointment with the psych.  We pay $100 a week for a 45 minute therapy session for DS.  We pay about $50 a months for his medications.  When we looked into ABA, it was going to be a $100 copay each time they walked in the door.  We also pay $50/kid/week for speech therapy (which is a steal); up until last year all three boys were in speech, now it is just the younger two, but all signs point to the baby needing to start in the next year.

 

Our mental health coverage, which is considered good by industry standards, only has individual deductibles, not a family one.  We hit DS's mental health deductible every fall and then "only" have to pay 20% of the costs for the final months of the year before we start the cycle all over again.

 

I think we firmly fall into the "less access" side of things.

 

Wendy

 

I'll just ask, but have you looked to see whether you'd need the psychiatrist weekly sessions if you got ABA?  Because what you're paying weekly for your psych is more than what I pay (cash price) for my behaviorist.  And my behaviorist will take emails, solve problems, and BE THERE for me.  She comes in my home and problem solves.  I send her a foot long email every week and she comes in with solutions and options.  It might be that what you're paying the psych to do would be *better* handled by a BCBA.  And the BCBA has ABA tutors she brings into my home.  Cash price in our area for them?  $15 an hour.  Sounds like a ton, but that means you can get 6-7 hours a week for the cost of one hour with your psych.  So I know you're spending a ton of money, but in our area for $175 a week (dropping the weekly psych), you could get in your home 1 hour with our behaviorist and 7 hours of ABA, a total of 8 hours of ABA a week, with them stabilizing him.  And it might be WAY more effective because it's them doing it, objectively, applying the math of how much the demands are, what is working, what isn't.  

 

It's something to look into.  Our situation was BAD.  Like way bad.  

Edited October 18, 2016 by OhElizabeth

[maize]

Create a reward system of who is behaving. write down exactly how many times each one screams, hits etc and reward who works towards better behavior. review it at the end of the day with your husband and kids so you can both be involved with behavior. This behavior needs careful attention in a structured way. Keep a notepad handy.

This would not work in my household. When my screamers scream, they are not functioning rationally and are not capable of adjusting their behavior in the moment in light of rewards/consequences.

 

Logic only works when the prefrontal cortex is sufficiently engaged.

[PeterPan]

This would not work in my household. When my screamers scream, they are not functioning rationally and are not capable of adjusting their behavior in the moment in light of rewards/consequences.

 

Logic only works when the prefrontal cortex is sufficiently engaged.

 

Amen.  ABA is what is needed.  It's way beyond just rewards.

[PeterPan]

Our closest Montessori is 45 minutes away...and, of course, $$$.

 

There are no autism-specific schools anywhere near us and I have yet to find any social skills classes or other resources either.

 

I just don't understand.  We live in a thriving, family-friendly area.  There are new parks, schools, libraries, nature trails, YMCAs, private extracurricular facilities, etc being built every year.  And yet special needs services are pretty much non-existent.

 

Wendy

 

Find out where they hide people.  In a school district near us, I think maybe they send all the SN kids out.  Like seriously, you tour the beautiful school, and you're like WHERE ARE THEY...  

 

Honestly, if you don't have access to these things, like seriously don't, you need to MOVE.  The #1 determiner of employability is social skills.  With no access to ABA, no access to in-home help, no access to charter schools, nothing, that's just intolerable.  I'd sit your man down, have a get with Jesus talk, and that would be it.  Don't let this stand.

 

Just because homeschooling works for lots of people doesn't mean that it's good for all things.  Isolation, when the challenge is autism, is NOT GOOD.  This is NOT a path you should be walking with NO SUPPORT.  You need to stand strong, know there is support, and DEMAND it.  You would have to fight for it ANYWHERE you lived, but if it's really not available where you are, if basic services like ABA are not available, then fight for your family and MOVE.

[PeterPan]

http://info.bacb.com/o.php?page=100155

 

Have you tried this?

[JustEm]

Create a reward system of who is behaving. write down exactly how many times each one screams, hits etc and reward who works towards better behavior. review it at the end of the day with your husband and kids so you can both be involved with behavior. This behavior needs careful attention in a structured way. Keep a notepad handy.

For my high anxiety and awful tantruming child this would cause too much stress and result in more frequent tantrums.

[MomatHWTK]

If you can't get counseling for yourself, could you see someone to determine if an antidepressant or other medication would help? Also, I think ages 7-14 are the most challenging for ASD because the child's brain is developing so quickly. Give yourself permission to relax on things that aren't necessities.

 

:grouphug:

Edited October 18, 2016 by MomatHWTK

[LucyStoner]

I had no idea how many ASD services were around until I call a crisis line. I learned there was a lot more than I thought.

 

I spent a lot of years attributing everything to stress. What I found was that even if it was primarily driven by stress, I still needed medical help.

 

We HAVE (some 6+ years back) had the police at our door. It was not a neighbor who called, my husband was stopped for speeding because he was rushing home and he explained why so they came to see if we needed anything. Our son had lost it over a book and didn't stop for, a long time. We ended up in the ER that night.

 

We have good private insurance too and it was pulling teeth to get them to cover things until some legal changes.

 

I'd start calling, starting with the ASD advocacy group in your state and not stop until you get some answers, be that home bound instructional time, ABA, a special out of district school placement, respite, a PT babysitter or some mix of stuff.

 

It's perfectly normal to not like kids when every day is high alert.

 

I can say things got a lot better when my son who is more affected by ASD got older.

 

If you ever want more specific ideas or just someone to commiserate with who has BTDT with high needs kids, feel free to PM me.

[Storygirl]

:grouphug:  Wendy

 

I crumbled under the constant stress of dealing with my four and the alphabet soup of needs that exists in my house. It wasn't as challenging as your situation, but it was hard. For a long time, I didn't see a way to make changes, because I was certain that homeschooling was better for my kids, and I was willing to sacrifice my own well being for their good. Even though I was miserable, and like you, I did not enjoy my children. We moved, so that my husband could work 10 minutes from home instead of 50 and could help me more. And we enrolled the children in school, because I needed a team of people to help me. Things aren't perfect now, but they are better.

 

School might not be an option for you, but look into it seriously. What was a poor experience at the preschool level might be a much better at the elementary level, and your life is also in a different stage now, where the logistics of sending someone to school might work better.

 

There may be resources in your state or county that you don't know about yet. Are you in touch with your county board of disabilities? They may be able to direct you to some undiscovered help. A social worker at a children's hospital may also be a good resource, if you can figure out how to get connected. We got a lot of good information from a social worker at one of my children's medical appointments.

 

I do think you need a regular break. I'll repeat what some others have suggested and say that you should consider hiring a babysitter or helper for those hours that your husband is watching the kids. Don't be the back up helper. Find someone else. Spend some time training them. Maybe you could ask the special ed department at the school if any of their aides or intervention teachers would like some private work on the weekend.

 

Recharge a little, then tackle the question of what to do next and what resources you can find. Because I don't think you can go on in this way indefinitely, and you need a plan for your next stage. My kids have been in school for a year now, and I don't have all of my mojo back, but I'm getting there. And my kids are doing well and getting good help, though it is pricey (including tuition for a specialty private school).

[Denisemomof4]

First of all, get an Angel Guard for the seatbelt so your child can stay safely in place...... until he figures out that he can just loosen the seatbelt and climb out. He will not be able to unbuckle the seatbelt.

 

You are an amazing woman. My youngest had severe behaviors when she was younger and I honestly don't know how I ever survuved it. Many days I would lie in bed and cry because I had to face her and her abuse. I had to learn to emotionally distance myself from her and simply look at myself as her caregiver. The screaming day in and day out? I just don't think I could have handled it. You are doing more than many of us ever could.

[Crimson Wife]

Can you get the Medicaid waiver to wrap around your private insurance? The Regional Center (part of the Dept. of Developmental Disabilities) put my SN child on the Medi-Cal waiver and that means Medi-Cal will pick up the co-pays and deductibles for any provider who accepts it. That includes the ABA agency.

[Lecka]

I know two families who moved out of state last year to have insurance coverage, and while

I can't say I knew them well, from Facebook they say it was a good decision.

 

For both of them, they were not looking so much at the next one year but at the next 10 years and 15 years. One of them expects their daughter to need help as an adult and our state is cutting funding for adults. One of them was looking at the cost of years of therapy paid privately that would be covered in another state (but not looking at adult services).

 

Then, I am familiar with some school district issues. It seems that sometimes (often) one school district in an area will be better with certain things, and then many families will move there instead of fighting their school district, if it is a matter of moving 30 minutes away.

 

My own son's program started when one family was very involved with school things while another family moved towards a law suit. This was about ten years ago and the resulting program is good. But there are some bad, bad programs in surrounding districts.

 

Also -- keep in mind context that schools can be sued for not following IDEA for qualifying special needs. But not for gifted. So if you are more in the gifted loop, then keep in mind they are two separate things. But you would qualify for an IEP and very possibly (likely) for individualized school work.

 

I also agree about maybe there is a better elementary program or maybe there is something you don't know about yet. I am on an email list and head abouf some things only from the email list. And, it is through someone in the school district.

 

There could also be very little or nothing in your area.

 

I think even if you are managing now, maybe ask around. Maybe the receptionist at the mental health person's office, maybe somewhere else.... what do other people do? Is there something tolerable at a certain school? With a certain program? Are families moving for better services? If you asked in my town, I think you would hear (like I do) about families who do move.

 

I really hope things look better in 6 months or a year, but maybe in 6 months or a year some things will look more permanent (realistically). And then you start looking at the next 10 years. And then maybe it is good to know that other people are doing certain things or certain programs, just in case you do need it.

 

And then hopefully in 6 months things are going better with the difference in ages and maturity and those things. I do really hope that.

 

But if you are closer to burning out then I think looking now at what you might do, would be worth while.

 

Also I think it is possible things aren't mentioned to you bc of being respectful to you with homeschooling. But also there may not be anything good. If there is any parent group, you might ask. Any place you might call and ask. A lot might not know, but once you find one thing maybe there is more.

 

Is there a place in your state doing a lot of autism testing, like a hospital or university clinic? Sometimes they have a good referral list, sometimes they don't.

 

I also agree with the bacb website.

 

We are moving and I emailed some people from there, got some non-responses, but also got two responses, and I have inquired about the school districts.... and heard that of 3 possibility school districts, two of which seem very similar outside of special needs, that one of them is much more committed to special needs, easier to work with, using more modern approaches, etc, and the other one is hard to work with and they know of clients who have had trouble there. They say it more vaguely than this but that is how I am taking what they did say.

 

Oh, also I have heard in another town, they had some changes after a member of the school board's grandson was diagnosed with autism, in another state, and he person saw what his grandson was getting that local students were not. So little random things like this can make a difference sometimes!

 

But I hope it is not something so extreme you are in that position, but it is something within my experience locally.

[Melissa in Australia]

Hugs hugs and more hugs

 

I have a screamer, it is hard

 

Our speech pathologists custom made a social story about a boy puppet who screamed. She then acted out the book with her puppets. The result was miraculous. Screaming for 6 hours a day has dropped to a few minutes multiple times a day and some days no screaming. Of course every child is different and the root of twin 2 screaming is trauma related, primitive brain response as default setting.

[PeterPan]

You should have a county board of developmental disabilities that can connect you with resources.  Your doctor should be able to connect you with resources.  A children's hospital.  

 

It's not nice to have to talk about, but you should know that even calling the police isn't necessarily bad.  They have people *trained* to handle challenging situations.  There's actually a name for it.  If you talk with your county board of developmental disabilities, they'll know this stuff.  But like the others are saying, you have to ask for help.  It's kind of hidden.  They don't come to you.  You actually have to go to them and beg and ask.  And it feels like that takes time you don't have or you worry you won't qualify.  You WILL qualify.  Sometimes you have to fight.  But the day you get that ABA team in and start getting in-home help, it will be worth it.  It sounds like you have multiple kids who should qualify for services.

[PeterPan]

I like Story's suggestion to hire someone, but I'm guessing a random teen babysitter can't handle this.  We NEVER leave my ds with a teen.  I was just telling dh that maybe now he could do that, after 6 months of ABA.  But the op's situation is with at least two on the spectrum, sounds like, and lots of challenges.  That requires adults.  And those adults are either close family friends (who would have already volunteered) or paid.  And around here, the way to find those paid people is through the respite care directory that the state maintains.  You access it through the county board of developmental disabilities, and they have funding to help pay for it.  You advertise in their listings, hiring the person you like.  

 

We just lost (through death) our person who had given us lots of help.  We're not looking forward to being without.  :(   My ABA team is here 8 hours a week, but even with that it's good to have more.

[DawnM]

I would send the older ones to public school for a while and focus on the youngers.

 

I actually do that in fact. If I do not like their behavior at home, they can go to school until they are where I want to deal with whatever. I think you should do this. It does not have to be permanent and it does not have to be both the older kids. 

 

 

That completely depends.  My oldest has Asperger's and PS was a disaster for him.   I felt horribly guilty as he would come home begging me to let him come home (I had gone back to work).  I had, quite literally, thrown him to the wolves.

 

I came back home and pulled him out too.

 

I would never suggest kids on the Autism spectrum go to local PS unless there are VERY good systems in place for them.  

[PeterPan]

I would never suggest kids on the Autism spectrum go to local PS unless there are VERY good systems in place for them.  

 

I totally agree, I would not send him without some pre-agreement with the school on supports or even a full IEP.  We've had people on LC who got their school to agree to aides, etc., even before the dc started.  Just depends on the school.  The school psych can come in your home and observe.  They came in ours.  The only question is whether they're willing to help you, because it CAN be done.  But I agree, with a very challenging situation, I wouldn't just enroll him.  My ds does that with watching games and not being able to understand the rules and getting overwhelmed.  These are issues that come up a lot in school.  The op has lots of things she could say with enough imperative that maybe the school would have some compassion and help.  You don't know till you ask.  Besides, the school gets more money based on tier.  It's not like the school is going oh you're a pain in the butt.  You're bringing the school money.  They might say you're a pain in the butt, but reality is you bring them money.  So to demand a bit, fight a bit, saying I want to enroll him but his situation is enough that I cannot until you get some sort of supports in place, this is not unreasonable.

 

Fwiw, I mentioned getting an advocate.  You want to see what your private psych report said re: placement and supports, and this is a time to have an advocate, a paid, legal advocate.  The ps typically receives $$$$$$ for a student when they put autism as the disabling condition in the IEP.  There are big bucks in services they could offer.  These are things you aren't experienced in handling, so you don't know what you're leaving on the table until you bring in paid counsel.

 

It would be nice to say oh the school just does everything the kid needs because they're really nice people who care.  Reality is it isn't the case.  They do what lawyers and fighting parents compel them to.  And if your kid is in the system for a year while you have an IEP fight, that sucks.  Our IEP fight was TWO years, which is even more flabbergasting.  But it can be done.  No matter where it happens, access to services is important.  Social skills are the #1 determiner of outcome (employability), so having access to these services is vital.

Edited October 18, 2016 by OhElizabeth

[happypamama]

Wendy, just big hugs for you. You are an amazing mother. (And your ILs might be right, but that was a really lousy thing for them to say to you. As if smacking your kid upside the head is really an option.). I've read many of your posts, and it's obvious that you work very hard to make sure everyone's needs are met and that they're all safe. That's not easy with several small children, and you got handed some extra challenges. And yet, you do it. I hope your DH, parents, and ILs are acknowledging that you are doing it every single day.

 

I wish you could get a regular break. It all sounds very draining and exhausting. Do you have a friend who could handle your littles while your DH handles the older two?

[sassenach]

Can you get the Medicaid waiver to wrap around your private insurance? The Regional Center (part of the Dept. of Developmental Disabilities) put my SN child on the Medi-Cal waiver and that means Medi-Cal will pick up the co-pays and deductibles for any provider who accepts it. That includes the ABA agency.

That's a uniquely California program. Our taxes suck, but we have probably the best disability services in the nation.

[maize]

That's a uniquely California program. Our taxes suck, but we have probably the best disability services in the nation.

There is definitely huge variability between services available in different states.

[wendyroo]

That completely depends.  My oldest has Asperger's and PS was a disaster for him.   I felt horribly guilty as he would come home begging me to let him come home (I had gone back to work).  I had, quite literally, thrown him to the wolves.

 

I came back home and pulled him out too.

 

I would never suggest kids on the Autism spectrum go to local PS unless there are VERY good systems in place for them.  

 

Part of the issue is that my oldest, who has official letters after his name (ASD, ADHD and anxiety disorder) is actually in a very manageable state right now.  

 

He and I have worked and worked and worked to figure out what routines and structure and scaffolding he requires to mostly successfully get through our days.  I can't leave him unsupervised with his siblings, I can't let him gets his hands on dangerous things, I can't expect him to carry out even simple tasks independently, I can't lose him in the shuffle and give him more freedom then he can handle, but if we stick to our routine and I hold up my end of the bargain then he is able to thrive in this environment.

 

He is an academic rock star, we are going through the Super Flex program and he is starting to be able to apply those lessons to his life in very rudimentary ways.  He is making slow, but steady progress in his group gym classes with his age mates (I have arranged the schedule such that I can stand near his group and give him subtle prompts and act as his aide), he is doing well in a group piano lesson (again, with me close by), and he has his first friend (another homeschooled boy his age who is either on the spectrum or very close to it).

 

I'm sure he would qualify for an IEP at the school, but sending him would not alleviate my main source of stress.  Yes, it would free up my time, but I am loathe to disrupt his life like that when he is finally finding his groove at home and in the community...obviously, with huge accommodations in place.

 

It is my second son who is my main screamer and tantrum thrower.  He does not have any official diagnoses, though we have taken him for two evaluation appointments, one of which came back suspecting ODD (though they were not willing to slap that label on him since he was only 4 at the time) and another that said he was displaying characteristics of PTSD or attachment disorder...though they did not know why and could not recommend a course of action.

 

He also has a severe anaphylactic reaction to wheat which makes it very dangerous for him to eat in public...especially a place like a public school filled with sandwiches.

 

The mental health center has suggested we wait another year and then do another evaluation to see if he has "grown into" a clearer diagnosis.  Everyone seems pretty sure he is not on the spectrum, but ODD, PTSD, attachment disorder, and ADHD have all been offered as possibilities.  It was even suggested that his issues could stem from early infancy when his first experiences nursing (when I was consuming wheat before we discovered his allergy) led to him being violently ill and not able to breathe.  

 

Currently, he is a terror.  He is completely unmanageable.  His attitude and behavior can turn on a dime - happy, playful, drawing with chalk on the drive way one minutes and screaming, spitting at me and running into traffic the next with no discernible antecedent.  A couple months ago when I took the kids to the pediatrician for the baby's 9 months appointment I had to call the office from my car in the parking lot and ask a nurse to come help me get the 5 year old safely inside because he was throwing such a violent tantrum.  Then 10 minutes later he stopped mid-scream and asked if we could stop and get ice cream on the way home.   :confused1:

 

Wendy

[Lecka]

I think you are caught between a rock and a hard place, there, because of the wheat allergy. 

 

I can see how everything makes sense, to not change anything, and just acknowledge it is hard.

 

For me personally, I know about myself that I will emotionally distance myself from my kids if I am not having time with them where I enjoy them.  Well, I don't automatically, but I can slip into it.  I have to watch for it about myself. 

 

It sounds like you have those good times with your oldest son with his school, and I think if that is your time of day that is going really good, it can be bad to take that away and leave you with the less-good times of day.  I think that can turn into a big drag.

 

Something I found out about a respite program here, that I don't participate in, because it seemed like a lot of hassle..... the workers are contracted out kind-of, and they need to be on the provider list, but after that, it can be a bit pick-and-choose about who works with who.  Or, you can just be assigned someone.  But it seems the better people work with the same family for a long time and consistently.  They have gotten hooked up in some way, and then the babysitter gets on the respite care list.  It may be people who have worked in the schools as aides (or currently do and want to pick up some evening/weekend hours). 

 

If you have an opportunity to ask, you might ask around for names of anybody who might be looking for work, if you are able to have the respite care work this way.

 

B/c here I don't hear that it is very good for people who get assigned someone, b/c it is like -- they did get on the provider list, but they are not committed to it as a job, and would rather have an easier job really.  But there are people who have a commitment to the field or who have experience, they are out there I think.

 

But it seems hard to get them.

 

I have ended up having in-home support with an ABA program, so I did not end up doing the respite care program, but I do think if I had kept trying I could have eventually found someone. 

 

I am really just throwing stuff out there.  This respite program is for military families, locally, there is not anything (that I am aware of, and I probably would be) like this available in general unless someone is "in crisis" and the crises I have heard of are to the point of being unsafe. 

 

 

Edited October 18, 2016 by Lecka

[BooksandBoys]

Hugs, Wendy.

I understand. My situation is not as bad as yours right now, but it was, and it could easily be again. I understand what you are going through. I understand the detachment, the sadness, the uttter, impossible exhaustion (seriously...I will never sleep through the night. Ever) and the knowledge that you Can Not leave your children with anyone, even your spouse.

 

My second child was given a "maybe" ODD nod when he was 4, but the official diagnosis is PTSD and severe anxiety. He's a screamer, a runner, very strong, and has a long list of food allergies/intolerances, though not as severe as your son's allergy. He's an escape artist, and bad things have happened despite all the locks abdicate in the world (window plus baby? We've had similar moments).

He's doing much better now than he was this time last year (combo of certain supplements, specifically selected exercise that targets his sensory issues (swimming), therapy, dealing with the hidden chronic constipation that he's likely has all his life...even after I thought I had resolved it by finding his food allergies...turns out that helped but didn't solve the constipation, and, of course my entire soul and more energy and patience than I have poured into him).

 

My oldest, at 8, is now a rather stable 2E (ASD, severe ADHD, gifted). He wasn't last year or before that (OT and P did wonders for him). My youngest who is NT? I missed his babyhood because I was in crisis control every moment with the older two. I resent that. I wanted to enjoy him.

 

I know with your son's allergy that it's not an option, but my second son is in public school this year. Some days, I have to physically carry him into the building, but I was so broken from 5 years of constant crisis, that I had to do something. He hasn't run out of the building yet (that I know of). I consider that a resounding success. My youngest goes to preschool. I have a few hours every day of relative quiet, minimal touching (sensory guy is hard on my body), and targeted homeschooling with my oldest.

 

Given the allergy, if there is any money left to hire help, do it. Could you find and train a college student? Check the psych and education departments. Have that person help you five hours a day, two days a week, or two hours a day, 5 days a week? Then also have that person commit to another three hour chunk during the week when that person is your husband's second set of eyes and hands so that you can leave!!! You are amazing, but if you fall apart (and you will eventually...I nearly did), who will do what you do? They need you to take care of yourself.

 

Full disclosure; we moved across the country this summer so we would have more money so I could have help (preschool, mother's helpers, more money for therapies). We couldn't have put them in school where we used to live. We were desperately broke and the schools were terrible.

 

Oh, do you have anyone to talk to? Finding a couple of people who would listen, encourage me (without trying to fix it...because there really aren't solutions), and not judge me helped more than I could have ever imagined. They were hard to find!

I'd be that person for you if you need it, and I know I saw several others offer to PM with you. Having someone you can share those hard feelings with helps so much.

[Crimson Wife]

That's a uniquely California program. Our taxes suck, but we have probably the best disability services in the nation.

 

Medicaid waiver is a Federal thing. It's sometimes called the  "Katie Beckett" waiver. http://parenting.blogs.nytimes.com/2012/06/06/because-of-katie-children-with-severe-disabilities-can-live-at-home/?_r=0

[eternalsummer]

...

 

Currently, he is a terror.  He is completely unmanageable.  His attitude and behavior can turn on a dime - happy, playful, drawing with chalk on the drive way one minutes and screaming, spitting at me and running into traffic the next with no discernible antecedent.  A couple months ago when I took the kids to the pediatrician for the baby's 9 months appointment I had to call the office from my car in the parking lot and ask a nurse to come help me get the 5 year old safely inside because he was throwing such a violent tantrum.  Then 10 minutes later he stopped mid-scream and asked if we could stop and get ice cream on the way home.   :confused1:

 

Wendy

 

That sounds really difficult.

 

Do you have a fenced backyard?  My DS8 was nowhere nearly that difficult but he was a runner and we never, ever, ever, ever, ever sat in an unfenced area that was less than 100 yards from a street.  He just could not be trusted for a second, and he was *fast*.  I couldn't hold his hand walking down a street - he had to be in a stroller every time (until well past a normal stroller age, really).  He could barely handle his own doctor's appointments; I could never have taken him to someone else's.  

 

His older sister is a relatively obedient kid and the next younger is almost 4 years younger, so I had a lot of attention for him in his hardest years, which was good.  It sounds like a lot of your troubles are just in having so many demanding littles at the same time :(

 

I think you have good reasons for not putting them in school, but I do think it might be easier for you (and them!) if there were some time each day when you and they could relax.  I am not sure exactly what that would look like - maybe a babysitter (an adult one) for the littlest two while DH alternates taking care of one of the olders and you spend time with the other in a low-stress situation of some sort?  Could a babysitter (an experienced adult one) handle the 5 year old for a few hours?  I dunno, just thinking out loud.

 

It is normal not to be fond of your kids at all ages; I love toddlers and I love 8+ year olds, but the ages say 5-7 just drive me insane.  I still love them but I don't know how much I like them.  Then they grow out of that age and I like being around them again.

 

To have to face every day as something else you must get through is depressing, though, and probably fairly depressing for them, too.  That's why I'd look for something you can look forward too, and that they can look forward to too.

[Lecka]

I am just going to comment that my state does not accept funding for the Federal Medicaid waiver. So no, we don't have that here. We have my husband's military insurance but most people here don't and just don't really get any services. If they lived in a neighboring state they would. I hate it.

 

Edit: I followed the link, and maybe that is available here. Maybe it is a different waiver we don't have. There is a woman at my church whose son has a nurse at home for part of the week, and I think it is going well for her. I was thinking more just of autism-related services.

Edited October 19, 2016 by Lecka

[FaithManor]

Part of the issue is that my oldest, who has official letters after his name (ASD, ADHD and anxiety disorder) is actually in a very manageable state right now.

 

He and I have worked and worked and worked to figure out what routines and structure and scaffolding he requires to mostly successfully get through our days. I can't leave him unsupervised with his siblings, I can't let him gets his hands on dangerous things, I can't expect him to carry out even simple tasks independently, I can't lose him in the shuffle and give him more freedom then he can handle, but if we stick to our routine and I hold up my end of the bargain then he is able to thrive in this environment.

 

He is an academic rock star, we are going through the Super Flex program and he is starting to be able to apply those lessons to his life in very rudimentary ways. He is making slow, but steady progress in his group gym classes with his age mates (I have arranged the schedule such that I can stand near his group and give him subtle prompts and act as his aide), he is doing well in a group piano lesson (again, with me close by), and he has his first friend (another homeschooled boy his age who is either on the spectrum or very close to it).

 

I'm sure he would qualify for an IEP at the school, but sending him would not alleviate my main source of stress. Yes, it would free up my time, but I am loathe to disrupt his life like that when he is finally finding his groove at home and in the community...obviously, with huge accommodations in place.

 

It is my second son who is my main screamer and tantrum thrower. He does not have any official diagnoses, though we have taken him for two evaluation appointments, one of which came back suspecting ODD (though they were not willing to slap that label on him since he was only 4 at the time) and another that said he was displaying characteristics of PTSD or attachment disorder...though they did not know why and could not recommend a course of action.

 

He also has a severe anaphylactic reaction to wheat which makes it very dangerous for him to eat in public...especially a place like a public school filled with sandwiches.

 

The mental health center has suggested we wait another year and then do another evaluation to see if he has "grown into" a clearer diagnosis. Everyone seems pretty sure he is not on the spectrum, but ODD, PTSD, attachment disorder, and ADHD have all been offered as possibilities. It was even suggested that his issues could stem from early infancy when his first experiences nursing (when I was consuming wheat before we discovered his allergy) led to him being violently ill and not able to breathe.

 

Currently, he is a terror. He is completely unmanageable. His attitude and behavior can turn on a dime - happy, playful, drawing with chalk on the drive way one minutes and screaming, spitting at me and running into traffic the next with no discernible antecedent. A couple months ago when I took the kids to the pediatrician for the baby's 9 months appointment I had to call the office from my car in the parking lot and ask a nurse to come help me get the 5 year old safely inside because he was throwing such a violent tantrum. Then 10 minutes later he stopped mid-scream and asked if we could stop and get ice cream on the way home. :confused1:

 

Wendy

I am so sorry Wendy. All I can suggest is that you ask around community mental health for a trained respite worker.

 

As to his dignosis, he sounds to me like he is exhibiting RAD tendencies which can be caused by pain and severe illness at such a young age, violent, prolonged allergy to wheat in infancy going untreated absolutely could be a cause. As a former respite worker for foster families with RAD placements, I can say with confidence that you are a rock star mommy, and that distancing yourself emotionally - channeling your inne Mr. SPOCK - is a totally appropriate survival mechanism and given the way RAD children respond to emotionalism, you are actually doing your child a service to take your feelings out of the picture when interacting with him if he is indeed RAD. I would have given anything for some of the parents I worked with to be able to let go of their preconceived ideas of how they should feel about these little ones.

 

That said,knowing special needs services like I do, I have a feeling thst if you were to place 2nd ds in school for a while, it would not take long for services to magically appear. Administrators initial reaction to well, anything that is going to cost a bunch of money not related to the sports program....gr....is to deny, deny, deny. If they can possibly convince you to work with him at home, they will refuse assistance because that is the easy path for them. Legally, they cannot refuse to provide him an education of some kind. So if you stick to your guns and refuse to homeschool him, they will be forced to hire aides, get therapy, put together a plan. I have friends who have had FAS and RAD kids and struggled for years with all the "no, the child does not qualify" until they got fed up with it and refused to take their kiddoes home. Eventually the schools decided they better actually do something.

 

Also, check and see if there is a special needs lawyer in your state. There are some who specialize in forcing schools to produce what the law says they must. My sister worked with one in Kentucky and it was amazing what school districts could suddenly do when facing a legal expert.

 

And truly, sending him even if the school functions only as babysitting for now is okay too. Really. You need to protect your health both physical and mental because your other children need you too. This kind of stress could take many, many years off your life.

 

Hugs, hugs, hugs...you are doing a great job!!!-

[DawnM]

Part of the issue is that my oldest, who has official letters after his name (ASD, ADHD and anxiety disorder) is actually in a very manageable state right now.  

 

He and I have worked and worked and worked to figure out what routines and structure and scaffolding he requires to mostly successfully get through our days.  I can't leave him unsupervised with his siblings, I can't let him gets his hands on dangerous things, I can't expect him to carry out even simple tasks independently, I can't lose him in the shuffle and give him more freedom then he can handle, but if we stick to our routine and I hold up my end of the bargain then he is able to thrive in this environment.

 

He is an academic rock star, we are going through the Super Flex program and he is starting to be able to apply those lessons to his life in very rudimentary ways.  He is making slow, but steady progress in his group gym classes with his age mates (I have arranged the schedule such that I can stand near his group and give him subtle prompts and act as his aide), he is doing well in a group piano lesson (again, with me close by), and he has his first friend (another homeschooled boy his age who is either on the spectrum or very close to it).

 

I'm sure he would qualify for an IEP at the school, but sending him would not alleviate my main source of stress.  Yes, it would free up my time, but I am loathe to disrupt his life like that when he is finally finding his groove at home and in the community...obviously, with huge accommodations in place.

 

It is my second son who is my main screamer and tantrum thrower.  He does not have any official diagnoses, though we have taken him for two evaluation appointments, one of which came back suspecting ODD (though they were not willing to slap that label on him since he was only 4 at the time) and another that said he was displaying characteristics of PTSD or attachment disorder...though they did not know why and could not recommend a course of action.

 

He also has a severe anaphylactic reaction to wheat which makes it very dangerous for him to eat in public...especially a place like a public school filled with sandwiches.

 

The mental health center has suggested we wait another year and then do another evaluation to see if he has "grown into" a clearer diagnosis.  Everyone seems pretty sure he is not on the spectrum, but ODD, PTSD, attachment disorder, and ADHD have all been offered as possibilities.  It was even suggested that his issues could stem from early infancy when his first experiences nursing (when I was consuming wheat before we discovered his allergy) led to him being violently ill and not able to breathe.  

 

Currently, he is a terror.  He is completely unmanageable.  His attitude and behavior can turn on a dime - happy, playful, drawing with chalk on the drive way one minutes and screaming, spitting at me and running into traffic the next with no discernible antecedent.  A couple months ago when I took the kids to the pediatrician for the baby's 9 months appointment I had to call the office from my car in the parking lot and ask a nurse to come help me get the 5 year old safely inside because he was throwing such a violent tantrum.  Then 10 minutes later he stopped mid-scream and asked if we could stop and get ice cream on the way home.   :confused1:

 

Wendy

 

 

:grouphug:

 

May I also suggest one more thing.

 

You are in the thick of it.  You may not be able to see the forest for the trees.

 

It took MANY people telling me they saw great strides in my son for me to even BEGIN to see that the effort, toil, and hair pulling on my end was indeed making a difference in my son.  People on the outside who were encouraging, noticing even small changes, positive comments, etc......I had to, had to, had to focus on THOSE and not the negative Nancy's who didn't understand why my son wasn't neuro-typical, responding to neuro-typical discipline and guidance.

 

You may not see it, I sure didn't.  But in the years and years of one on one with him homeschooling, it made a huge difference in his outcome.  Huge.

 

Just a note of encouragement:

 

I didn't always "like" him.  Some days I didn't know why God would give me such an unloveable child.  I didn't know why I couldn't figure out how to best help him.  I even resented him for making me quit the job I loved so much to stay home and be with him.   He didn't appreciate my staying home.  He would throw fits, break pencils during school time, throw books if he was frustrated, scream, etc.....it was NOT easy.  Somedays I prayed that God would protect him from me because I was so angry I wanted to say very hurtful things to him.  Sometimes I DID say hurtful things to him.  I prayed that God would help me like him.  Many days I didn't.

 

He is now 18.  He is not perfect, nor has he suddenly become neuro-typical.   But, he is maturing, and the effort I made for my 11 years as a stay at home mom (when I didn't want to be home) has been his lifesaver.  I know I did the right thing.  It wasn't easy.  In fact, it was painful, but it was the right thing.

 

You ARE making a difference.  It may take 10 years.  But you are making a HUGE difference.  I pray someone will come along and notice the differences you are making and encourage you the way some of my friends encouraged me.   

 

It is so often 3 steps forward, 2.75 steps back.