| T O P I C R E V I E W |
| dena91 |
Posted - Jan 13 2015 : 5:23:49 PM
Hi Everyone,
I was thinking it would be nice to have a place to share and support each other with issues related to our kiddos with special needs.
I'll start things off: We have 4 children ages 4 to 22. Our 4 year old was born prematurely and struggles with feeding, sensory and growth issues. Zeke is a real pistol (they say that's what kept him alive those first 10 weeks - not always a comfort when he's totally saying no to EVERYTHING I say (obviously VERY thankful for that fighting spirit - I just need a place to share my every day feelings : )
Next, our 19 year old, Jonah, has autism. He graduated from our homeschool last year and is FLOUNDERING. He doesn't have his license and is not sure he'll be able to get one. This is devastating for a young adult! He's tried to get work; nothing happening there. He's tried to volunteer; nothing there either. He's just a bit slower in his processing and doesn't come across great in an interview. He IS starting an online writing class in a few weeks. Not sure where that will go, but at least its something to occupy his brain and his time. He's feeling pretty low right now and its tough to know how to help him.
Any one else out there dealing with similar (or different) issues concerning their children with special needs?
Dena
Farmgirl 5620 |
| 7 L A T E S T R E P L I E S (Newest First) |
| dena91 |
Posted - Feb 28 2015 : 09:04:41 AM
Hi Jennifer, So nice to meet you! Such good, hard questions. Our son Jonah was 6 when he started using the toilet. He had horrible diarrhea from 3-6 years old. After being on a gluten/casein free diet for 3 years and starting a home based program through Sonrise ( a group in Mass. called The Option Institute), he finally was able to use the toilet thank God!
As for their siblings...we are still dealing with old feelings of hurt (Jonah is now 19 and his 22 and 14 year old brothers have lots of lingering anger/hurt feelings related to Jonah needing more time with mom and dad, with not having a 'normal' brother to play with, to being frustrated by Jonah's processing delay and obsession with accuracy ...). Sometimes I wonder if we should seek out some family therapy...
Anyway, I guess these are all issues common to families with special needs :-) Thankfully, our kids are resilient and as time goes on hopefully we will be given ideas that will help us all!
Blessings,
Dena
Farmgirl 5620 |
| Jfollquam |
Posted - Feb 24 2015 : 12:40:31 PM
I have four kids also, Ellen is nearly 15, Lucas (11), Wyatt (9), and Sadie is nearly 2. What did y'all do about potty training? Wyatt is my near and dear to my heart, and is on the high end of the spectrum, but he just simply will not use the toilet? I don't know what to do! Also, how do you get older children to cope and understand that their siblings brain is "wired" differently? My Lucas just doesn't understand I cannot I have the same expectations for Wyatt as I do him? |
| dena91 |
Posted - Feb 03 2015 : 12:52:42 PM
Hi AnneMarie, Looks like you have a nice big age span in your family too! (Ours is 22 to 4yrs). I always thought that sounded so wonderful, but I never anticipated the special challenges it can bring. Then again, maybe its difficulties for us have come because our 4 yr old can't do what the others want to do. As a preemie who was also small for dates, he is still sensitive to poor weight gain and illness so we have to be really careful not to take him to public places (not to mention his sensory and high activity level make him an extra challenge in public places :-) ).
It is easy to worry about the far away future for these guys. I remember when Jonah (our 19 yr old with Autism) was 2 yrs old. I was talking with 2 other parents of kids with specials needs during a therapy session. The conversation turned towards the future and I could not even fathom the topic! Now, 17 years later, I am in the throws of that topic. Together, me and my son are wading through the reality of becoming an adult with a special need. For example, he's trying to volunteer at the library. He had to return a phone call (not his best skill) and came down to tell me that he THINKS the librarian said to come in tomorrow at 1:00. 'Didn't you write it down?' I said. He didn't know he should remember a detail like that ...UGHHHHH. He wants to try these things on his own, but I'm not sure how far he will get. And this is just volunteering. My husband and I aren't sure he'll be able to work enough to support himself, yet the thought of him living with us as an adult is not appealing to him at all. And what about if we can't always be there for him? His brothers are not exactly shining examples of great caregivers yet :-). Anyway, it seems like we need to take this one day at a time, while also doing some future planning. All a bit challenging sometimes, especially with other children to parent!
Thanks so much for chiming in. ALWAYS wonderful to know you are not alone in this kind of experience!
Blessings,
Dena
Farmgirl 5620 |
| knittingmom |
Posted - Feb 03 2015 : 10:34:47 AM
Hi everyone,
We have five children, Connor is 22, Liam 12, Emma 8, Sophie 4 and our newest addition Daniel who is almost 3 months old.
Our older children are typical, Daniel was born with Down Syndrome, so our journey with him is just beginning. Right now we're just waiting for his surgery to repair his heart.
So far he is just like any other baby, which I expected and am expecting that he'll be pretty well like every other little boy out there. It may take him longer to do things but he'll find his own way of doing things. I tend to be a far future worrier, do I go back to work? Do I home school Daniel or have him attend his brother and sisters' school? What challenges will he have? What things do we need to put in place for his adulthood? Right now I'm trying to breathe and not worry away his babyhood.
Farmgirl Sister #3759
"There is no foot so small that it cannot leave an imprint on this world"
"The things that matter most are not really things after all" |
| dena91 |
Posted - Jan 14 2015 : 08:23:04 AM
Thanks Dawn and Stephanie! We have the strangest phenomenon going on right now. Way back when Jonah was obviously different, we came in contact with a doctor who asked if we were interested in doing something different. Being a farmgirl and the husband of a farmgirl, of course we said YES. That sent us down an amazing path of healing that we truely don't regret - cranial sacral therapy, homeopathy, esential oils, music therapy, home programs (that eventually led to homeschooling), and on and on. At the time we decided not to get an official label - we didn't have to because we were not in the school district - we knew what he 'had', but we didn't want to 'limit' him with labels. Well, that worked out wonderfully - until now. When he was a senior (18 yrs old), we decided to now get a label so he could get the services he needed. We could see the amazing progress he had made and felt a label would now be a blessing for him. Well it wasn't as easy as I had hoped. I contacted the school and asked for an evaluation. They did one but said, academically he didn't qualify for services - he has about a 9th grade ability academically but the school said 'so does everyone else', which made him fall in the average range. Can you believe that??? Because they didn't know him well enough to give him a Autism diagnosis - they needed teacher imput on social stuff they just didn't have - they suggested going to a community based psyciatrist for an official diagnosis. However, our son does not want a diagnosis. He wants to be like everyone else and now that he is over 18 we cant force him anymore (the professionals always ask him if he is in agreement with whatever we're doing). Its a real catch 22. He's high functioning enough to not qualify for services through the school, but not high functioning enough to go to college or work full time without some sort of support (he has to refocus his attention every 3 minutes, which is exhausting and makes it impossible to be 'present' and keep up with the activities of a job or class). My husband and I are trying to convince him to get a diagnosis (if he's not in agreement, I've learned from experience that if will fail) so he can become as independent as possible. As he gets more and more miserable and lonely, he is beginning to consider it.
Ah, you think you are doing what's right as a parent and sometimes it just works out differently than you think it will : )
Thanks for listening my farmgirl sisters!
Blessings,
Dena
Farmgirl 5620 |
| ddmashayekhi |
Posted - Jan 14 2015 : 06:37:46 AM
My youngest son, 11 years old, is on the high performance end of the spectrum. He was speech delayed at first, but just before he was 4 he began reading out loud! It has been a ton of work and at times a downright battle to get him all the help and education he needs. We moved out of our old district because they were terrible with him. The new one is a ongoing struggle, but things have improved greatly for him. I do want to bang my head on the wall sometimes dealing with insurance, referrals, IEP's, lethargic teacher's and staff, but things have improved greatly for him this year. We changed doctor's and get him OT through Easter Seals (the school's OT is non-existent) and 8 hours a week he works home here with behavioral therapists after school. I left my high stress job 2.5 years ago to be here for the therapies, it has been so worth it.
I constantly worry about his future, but then think take it one day at a time. Let's get 5th grade done first. I agree with Stephanie about checking out to see what services are available for your son. There may be more out there for him to help him get a job and a license. There are colleges, community and private, that offer programs for those under the spectrum. Your state may have programs to help him get a job and transportation until he does get his license. He needs to get out and meet others his age with or without similar problems he has.
It is a daily struggle for us parents dealing with this and can be pretty depressing at times. There are support groups for families to cope with the ups and downs of autism. It's a great way to share stories, get information, and network for programs.
I hope and pray you & your son will find the help he needs to move forward to becoming a fully independent, self supporting adult. Come here any time you need to vent. There are a lot of us farmgirls who's children have the same issues. We understand where you are coming from completely!
Dawn in IL |
| sjmjgirl |
Posted - Jan 13 2015 : 8:37:09 PM
Your kids sound wonderful Dena! My son is 13 and he also has autism. Although we have awhile until we worry about jobs, it's something that is always at the back of my mind. He's having a great year so far, but he's had tough times in the past. No doubt about it, it hurts when he has setbacks. Does your son get any services right now? There might be someone who can help sharpen his interviewing skills and boost his confidence a little. The writing class sounds pretty neat, so maybe having a good experience with that will help lift his spirits also.
Farmgirl Sister # 3810
Learn the rules so you know how to break them properly.
- Dalai Lama
April is Autism Awareness month. Autism affects 1 in 88 children (1 in 54 boys, including my son). Go to http://www.autismspeaks.org/ to learn more and help Light It Up Blue on April 2nd!
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