This post may be a bit of a jumble, because my thoughts are a jumble right now. In fact, I think I will just put my thoughts into bullet points and leave it at that.
- Living with a household of people who have executive functioning delays is exhausting (my two sons and a bit from other family members who are just developing or overwhelmed with their lives and need support).
- Executive functioning skill deficits are especially evident when you are trying to make changes.
- I feel that I am sharing my brain with three or four other people much of the time.
- Many people with FASD have average or above average intellectual abilities, as is true with my son, but still struggle with executive skills, social communication, self-regulation and adaptive skills.
- All of these qualities are important for adulting and my son struggles a great deal with all of them.
- I wish there was a really good online or in-person support group. Even the FASD Facebook support group is mostly a whine fest. There just isn't much useful information on it most of the time.
- I wish my son could accept FASD as part of his being, so we could openly talk about it without it becoming a shouting match if his special needs are brought up.
- I wish he could accept outside support in a constructive way.
- I fiercely love my son and see so many wonderful qualities in him! I wish he could feel and absorb how wonderful he is instead of dwelling on his deficits (yet not admitting that there is a reason for those deficits and that something could be done about it...instead, calling himself stupid or a jerk, which gets us nowhere).
- How do you help someone manage their deficits without always pointing them out which just lowers their self-esteem and doesn't improve their deficits anyway?
- Vocational Rehabilitation failed us and I am still mourning that fact. I will get over it soon.
- Some research for FASD says to take 4 to 7 years off a person's age to get a more appropriate developmental age.
- That would place my son at 11 to 14 years old.
- You certainly wouldn't expect an 11 to 14 year old to work an adult job.
- However, you would expect an 11 to 14 year old to have constructive days that lead to development.
- Maybe I should review the development of an 11 to 14 year old boy.
- I feel like we have been on a summer break for a year with both of my sons. There has been limited growth and yet...
- In some ways they have grown a great deal. I see subtle improvements and growth in attitude, work ethic and relationships. But they are small and might not be noticeable to those who do not live with them.
- Are my current goals for Elijah too big? Do I need to cut them down into smaller bites?
- I need to worry less about what the world expects and have more confidence myself.
Like I said, there is a lot jumbling around in my brain. So far, Elijah hasn't gotten past applying for jobs on the Internet and being rejected for unknown reasons. I think the market is flooded with much more experienced people and that he is striving for jobs in companies that are too glamorous or desirable because of their pay and environment. The process is stressing him out so much that it is very debilitating and takes over the day, even when we only spend an hour or two looking for jobs.
On the bright side -- My husband was struggling to put up crown molding in our hallway which was only partly done when we moved in years ago. I suggested that we have Elijah give it a try, since he has remarkable visual spatial skills. Sure enough, he had the crown molding up in a matter of hours. It isn't perfect or professional, but with a bit of caulking and paint, it will be more than good enough for me. We are paying him 11 dollars an hour for the job and looking at others that he can do.
I got my first Pfizer vaccine this week, because I am a caregiver of a medically-fragile adult. That is a huge relief. I get the second shot on Tim's birthday. Tim is now on the county's waitlist. I hope they will call soon. Now I need to get the rest of my family signed up as soon as they are allowed. We might just have a vacation this summer after all.
Blessings, Dawn
I think you are very wise to be pondering and noticing what you are pondering and noticing right now about your boy. I understand to a certain degree what you are feeling as I look at my oldest (never diagnosed, but certainly must have at least ARND based on behaviors and hindsight), and what I predict for the future for my younger ones. Do trust yourself. I understand the wondering and uncertainty, but from the outside looking in . . . do trust yourself. You are a marvelous mother. You are a tremendous advocate. You are a gift to those children as they are a gift to you. You and your crew are ever in my prayers.
ReplyDeleteThank you so much. It means a great deal to be encouraged.
DeleteIt's hard trying to make the adjustment from teen to adult. I really think the modern mindset that you turn 18 and are suddenly adult is detrimental to a lot of teens, with or without underlying development issues. You are his biggest fan, and his biggest encourager, and you know him the best. Don't let "the standard" define him, or discourage you. He did a great job on the crown molding!
ReplyDeleteThank you. He is a wonderful young man in character. I need to spend more time dwelling on his attributes.
DeleteI think every now and then it is really important to write those jumbled thoughts down. I think the fact that you are seeing signs of improvement is plenty even if they are small steps that no one else sees. Over time those small steps really add up. I am sure you are doing a fantastic job even if it might not always feel like it. Looks like he did a great job on the molding!
ReplyDeleteThank you! I do see so much improvement from small steps adding up. A good reminder.
DeleteSmall steps baby steps. My eldest daughter is 25 and while she is high functioning I cannot deny that she has mild special needs (endometriosis) and is tiny. Additionally I think that she has undiagnosed type two narcolepsy as she falls asleep a lot during the day at random times. She is very smart but she needs some support. She also requires a special mobility scooter but I unfortunately have no clue how to get one for her.
ReplyDelete