The Burden of the Sibling of Special Needs Children

From L to R: Margaret, James, & Joseph

In my case all the children are special needs but James is, by far, the highest functioning child of my three surviving quadruplets. Though it feels vastly unfair I have all ready told him he may have to be the caretaker of his brother and sister one day.  Nothing like that settling into a nine year old's psyche. Sigh! I wish I could live forever and not saddle him with this possible burden but I doubt I will live to be Methuselah's age!

All this was brought up last night during dinner.  James was discussing that he wanted to visit Tokyo. He was talking rather animatedly about the subject and then stopped and looked at me and asked, "What would I do with Joseph?" I asked him what he meant and he said he would worry about taking Joseph with him and how would he keep Joseph safe if he was not there. At that moment, my heart broke a little. It makes me sad that James thinks Joseph is so disabled he would not consider taking Joseph with him. Joseph is actually quite a smart little guy. And James was concerned on who would watch Joseph while he was gone!

James asked me if I could watch Joseph. I told him, if I was around, of course I would watch him!  Then he asked what he should do if I was not around and I said he would have to find a reliable caretaker for him. Margaret said she wanted to go to Tokyo too. James said he would take her ONLY if she would listen to him and stay close. That is brave of him since Margaret is the wanderer and I can see her getting distracted and lost in Tokyo.

This conversation poignantly reminded me that having disabled sibling(s) may be a life-long burden for one of the other children. I am going to do the best I can to plan for Margaret and Joseph. I pray James will find, and marry, a very understanding wife! In the meantime, we live our life with purpose and plan for the future.

Things you are not told about Autism and ADHD

Photo credit: Lemonlimeadventures.com

Last night my husband and I went to marriage therapy.  I was all ready in a bad mood after leaving marriage therapy and then I get a phone call while we were still out from the sitter watching the children.  Though she is new sitter I was not prepared for what she had to tell me when I got home!

James got aggressive with her when she had told him to go to sleep and quit playing around with his brother. When she said she was going to text me he flipped out on her. I am sure it was because he know he was going to get in trouble but his behavior with her was outrageous!

The caregiver told us she texted us and then James grabbed for her phone.  She placed her phone in her bra to keep it away from him and he went to grab it anyways,  He was cussing at her and kept grabbing her.  Eventually he knocked her down and she fell into a toy bin and hurt herself.  James did at let immediately apologized for that.  The poor lady had hurt her wrist!  Thankfully she said she would be okay but his behavior was out of control!

With James having Autism and ADD he does not relate well to people on an emotional level.  He has not problem crossing personal boundaries like sticking his hands down that poor woman's shirt to try and get her phone. He knows he should not cuss but he did anyways to try and threaten her.  He pushed her down in desperation to get the phone with no thought of her personally.  All of this is basically due to lack of personal understanding of emotion, self control, and impulsivity.

We came home and James was immediately screaming and crying.  We hadn't even heard what he had done in detail yet but he did know he was in BIG trouble. He was blubbering and saying he was sorry.  Somewhere along the line James has come to the conclusion that saying sorry erases whatever he did wrong; no matter how egregious his behavior was at the time!

Today he is grounded to his room to think about his behavior.  He has some toys and books in his room and he comes out to do chores but it idea for today is for him to reflect on his behavior and hopefully not doing it again just to stay out of his room, if for not other reason!

Impulsivity and executive functioning is SO important!  We are obviously going to have to continue working on these skills!

Still Searching...

There is SO much going on.  Where should I start?  I guess the first is the search for a new nanny.  I really think at this point that caring for the children full-time was too much for Bailey physically and that is the cause of most of the current problems.  I am looking for someone to shoulder the responsibility full-time.  It is VERY hard!  There have been several comments that the pay is too low.  Not very constructive criticism there!  LOL   I am well aware of that!  When I have contacted nanny services or daycares that could handle the children I was told the cost would be $2000 per month.  As a state worker that is about how much I bring home in pay.  John pays me $1000 and I currently get $600 from SSI ( I don't think that is going to last).  So I get $3600 a month.  By the time I pay rent, bills, groceries there is little left.  That money is ALL I have to pay for child care.  That is the way it is...I can't change anything at the moment.