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Lost/Heartbroken. Need advice/support w/out judgment

Posted by on Jun. 11, 2014 at 4:53 AM
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I'm going to try and keep this "brief" as best I can.  I am just completely lost and don't know where to turn.

My ASD son Jacob, now 15, was diagnosed at 18 months.  I also have a 12 year old son, Noah, who although not diagnosed, quite possibly falls within the high-functioning/Aspergers end of the spectrum.  Noah is NT for the most part, but has significant learning disabilities.

Jacob is largely non-verbal. Can communicate wants/needs, repeat things that are said, but has no conversational speech.  In addition to autism, he is diagnosed with ADHD and Crohn's disease.  His behaviors have always been extreme and this has interfered greatly with his progress.  His dad and I divorced when he was 10 and his brother 7.  At the time I had custody of both boys.  Over the years Jacob has had increasing problems with aggression, particularly with his brother and other young children.  I made the decision several years ago to put him in a temporary placement to try and get him some help.  This placement lasted for 6 months and realy did no good for him as the supports/therapies that were promised during this placement were not lived up to.  When it was time for him to be discharged, it was clear that the school system where I lived was not going to be equipped to handle him.  Because of this, and also out of concern for the safety and well-being of our other son, my ex and I decided it would be best if Jacob lived with him, and Noah lived with me.

My ex and I have both since remarried.  Jacob's behaviors continued to spiral out of control after moving to live with his dad.  Despite this, and knowing that it is unwise for Jacob to be around small children my ex and his wife (via vasectomy reversal) decided to have a baby.  Not my business I realize, other than the impact this would have on my son.  Jacob became aggressive and violent with his stepmother while she was pregnant and again a temporary placement was sought for him.  This placement was at another facility and lasted 15 months.  This was a MUCH better arrangement for him.  The therapists, aids, etc at this facility were AMAZING.  A protocal was put in place to manage his behavior.  Things were about as close to perfect as we could ever hope to get for Jacob.  This was, however, only a temporary option, and he returned to his father's home 3 years ago.  His father and stepmother have their opinions as to why this is, and I have mine, but very soon after leaving the facility his behaviors spiraled right back down to where they were before-and worse.  It was several months after he returned home that he was diagnosed with Crohn's disease.  My mother has dealt with Crohn's for over 50 years and because of her experiences with the disease, as well as my own research, I would prefer alternative and less aggressive approaches to his treatment.  His father however has opted toward the more conventional measures.  Presently this includes him being on two different steroids.  Many of you will be aware of the fact that the side effects of steroids is aggression.  Naturally I am failing to see how this is helping his situation.  I also have issues with how they treat Jacob (too much centered on a heavy hand, and not enough love and compassion) but getting into that would add too much to an already lengthy post.

Anyway, things have gotten so bad, that his father has made it clear that he no longer wants Jacob in his home and that he wants a permanent placement for him.  You all are probably thinking, "What is the problem? You will just have to take him."  In a perfect world, I would like nothing better.  But I have our other son's safety and well-being to consider.  I don't want to "kid swap" and have Noah live with his dad, and Jacob with me.  Noah, because of our divorce and also after seeing his brother be put in two different placements already, has abandonment issues.  And frankly, I don't feel his father/stepmother are all that understanding/compassionate regarding his own learning disabilities/needs.  The school Noah is currently attending has been AMAZING for him and although he still has a long way to go to catch up to his peers, he has made significant strides.  I don't want, and can't, disrupt that.  The situation is further complicated by two other factors.  My husband's job took us out (temporarily) to the east coast, (my ex lives in the midwest).  I have tried going back to help with Jacob as frequently as I can, but commitments made between my husband and I to assure that have not ben lived up to.  We were actively working toward moving back to the midwest, when a month ago i was hospitilzed and had major surgery due to a ruptured brain aneurysm.  Needless to say that has put a serious wrench in those plans.  It also means I am not physically capable of taking care of Jacob right now.  I can barely take care of myself.  I cannot drive.  Simple things like taking a shower, doing dishes, and making dinner make me dizzy and send me to the brink of exhaustion.

I don't know what to do. I feel like mine and my children's worlds are about to come crashing down around us.  I love BOTH of my sons with every fiber of my soul.  I want what is best for BOTH of them.  As painful as it is, a permanent residential placement is probably what is best for Jacob.  But the options for that where his father lives are slim to none.  It seems like the only options are the status quo or foster care, neither of which is a good option.  Foster care wouldn't guarantee that Jacob would get the help he so desperately needs, and I am also guessing that choice would mean I would lose all rights to have a relationship with my son.  The thought of that literally makes me ill.

I just don't know what to do.

by on Jun. 11, 2014 at 4:53 AM
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Replies (1-9):
ksbondgirl
by Gold Member on Jun. 11, 2014 at 8:49 AM
Yikes!

There's no way ANYONE should judge you for this! I'm sorry that I have no answers for you but I think dad needs to step up here and get him back into the temporary placement your son was in until you can find a more permanent solution.

Good luck and keep us posted!
dmsfr
by Group Owner & PITA on Jun. 11, 2014 at 9:04 AM
1 mom liked this

So does your son have DDS services or SSD? I'm wondering because either should be able to help find more permanent housing for him. Be that near your husband or yourself. If not, you could apply for voluntary DCF or DCYS services. If you go the voluntary route, they could help with more permanent housing until he turns 21. You could ask for a congregate care setting rather than a foster home. In a group home, he would have the structure that he appears to do better with. In the last residential setting he had, it seemed like he went to therapies and had a schedule that is predictible...Families are not predictible when there are other kids involved. If you get stuck, let me know and I can try to help find more resources.

If you google Autism Resource Spectrum and the city/state (or closest largest city) you want your son to be placed in, the local ARSG will pop up. You could also call them to find out what placements are available. There may be some that are private and grant funded that you guys might not know about.

jamesmom34
by Bronze Member on Jun. 11, 2014 at 9:26 AM

No judgement here, I'm truly sorry that you have to face the decisions that you do but I will tell you because I have been a foster parent for many years and I do have a child on the spectrum (and this is MY opinion from my heart) I would not put my child in the foster care system if he had a disability as severe as Jacob's.  Dawn is giving you the best advice, a group home setting is the direction I would take.

MyHeart14
by New Member on Jun. 11, 2014 at 1:17 PM

The only supports my son receives is that a "helper" (untrained) comes in the home a few hours a week to assist with Jacob so his dad/stepmom can get a break.  We all "make too much" for him to receive anything else.  They have tried getting him replaced at the facility where his last placement was but have been denied. With the economy/state budgets such as they are, criteria has become more stringent.  They were also advised that even if he were approved to go back to that facility, it would be for a MUCH shorter timeframe  than it he was allowed previously, a few months maximum.  When he was there before, he was able to stay until behaviors were managed and they felt he was ready to return home.  His father also claims, that as they try to seek placement or other services for Jacob they are now being told his is a "mental health" issue and there is nothing available that is appropriate for him.

Thank you for the advice.  It definitely gives me a starting point.

Quoting dmsfr:

So does your son have DDS services or SSD? I'm wondering because either should be able to help find more permanent housing for him. Be that near your husband or yourself. If not, you could apply for voluntary DCF or DCYS services. If you go the voluntary route, they could help with more permanent housing until he turns 21. You could ask for a congregate care setting rather than a foster home. In a group home, he would have the structure that he appears to do better with. In the last residential setting he had, it seemed like he went to therapies and had a schedule that is predictible...Families are not predictible when there are other kids involved. If you get stuck, let me know and I can try to help find more resources.

If you google Autism Resource Spectrum and the city/state (or closest largest city) you want your son to be placed in, the local ARSG will pop up. You could also call them to find out what placements are available. There may be some that are private and grant funded that you guys might not know about.


MyHeart14
by New Member on Jun. 11, 2014 at 1:33 PM

i very much appreciate that.  You would be surprised how quickly people are to judge.  It's hard enough being in this situation, being so far apart from my son, and feeling so helpless but I've often gotten "the look" or outright criticism from people about why on earth my son isn't with me, why I live so far away from him etc.  Some have a hard time comprehending that each situation is very different and you try to make the best decisions based on the cards you are dealt.  Sometimes it works for the best, sometimes it does not.  Anyway, thank you for your understanding.

His dad is being denied requests for another temporary placement unfortunately.  The way the "system" works in this country is messed up.  PART of the problem is the trend  away from "institutionalization" and assuring that these kids are in "the least restrictive environment" and preserving their ability to live in their natural homes.  While this is noble and an appropriate goal for many if not most kids, there is no cookie cutter solution that will meet everyone's needs.  Some kids, like my son, have needs that are so severe that this approach does not work and there aren't, depending on where you live, a whole lot of good alternatives.  

Quoting ksbondgirl: Yikes! There's no way ANYONE should judge you for this! I'm sorry that I have no answers for you but I think dad needs to step up here and get him back into the temporary placement your son was in until you can find a more permanent solution. Good luck and keep us posted!


MyHeart14
by New Member on Jun. 11, 2014 at 1:44 PM

I very much agree.  If it came down to foster care, I would most likely make the decision to take him.  While that would ease the pain in my heart being seperated has brought me, I don't really think that would be the best for him either, and it certainly would not be for my other son.  Will have to cross that bridge as I come to it.  There's alot of good foster care situations out there, and of course some not so good.  But Jacob's needs are just too severe.  To be able to match him with stable, loving foster parents who are also willing and capable of meeting his needs is too much to expect.  He's been tossed around so much and gone through so much turmoil the last several years between his dad and I divorcing. the two different placements, his Crohn's diagnosis...I just wish I could have some divine intervention that would lead me in the right direction that can give my poor child the help, love, and peace he so desperately deserves.

Quoting jamesmom34:

No judgement here, I'm truly sorry that you have to face the decisions that you do but I will tell you because I have been a foster parent for many years and I do have a child on the spectrum (and this is MY opinion from my heart) I would not put my child in the foster care system if he had a disability as severe as Jacob's.  Dawn is giving you the best advice, a group home setting is the direction I would take.


bcogoli
by Member on Jun. 12, 2014 at 10:51 AM

I have no real advice for you but I will pray for you and the whole situation. Making decisions like this can be so hard especially when your pulled in so many directions. The fact that you are so torn on what to do really shows that your a great mom. I will keep praying for you.

CandyMoon
by Member on Jun. 25, 2014 at 1:53 AM

I so feel your pain. My son, also 15 with Aspergers has been in several facilities, the last one when he was 12 in which he stayed for 8 months. I'm a single mom and have two dd's at home, ages 12 and 22. He did wonderful at the last place and they were great with him. But lately he is getting violent again and so I fear for the safety of my girls. I think he did so well because of the very structured environment they provide that it's just not possible to create that type of structure at home, especially when you have other kids. My son can not attend school and is therefore always home with me. I may possibly have to look into finding another facility for him, which is the last thing in the world I want to do, I want my son with me. I know how hard it is to make a decision like that and I hope you find the right solution for your son.                                   hugs

patnic
by Silver Member on Jul. 5, 2014 at 5:11 PM

Wow - you are going through a lot.  I honestly don't have an answer for you, but I'll send out some prayers for you.    Take care, no judgements here.

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