Need Help with Goals for My Respite & Habilitation Hours

I know exactly what you mean. My little one will do things for others that he will not do for his parents and he has been that way since he started receiving EI services at 7 months old. When I was starting respite and needed to add a respite goal, our family service coordinator was very adamant that the goal needed to be about me so we come up with "Mom would like to receive support engaging her child so she can complete other projects and activities." Our progress marker was "Mom will report at 6 months that her stress has decreased." Of course this was for EI and I know things differ from and IFSP to an IEP. Can you say that you would like to "receive additional support engaging your child so he can continue to make steady gains in his ability to create relationships outside of the family" or something like that? Respite is about the needs of parents and as hard as it can be for us, it is OK to say "working with my kid is hard and I need a break!" Being a parent is a different role than that of a therapist. Yes, we work on goals with our kids, but it's not the same and it can't be the same or it drains your relationship. You need and deserve time to step back and regroup - thus the availability of respite care!

I know where you are coming from and am crossing my fingers that you get your additional hours soon AND maybe a new service coordinator who is respectful, understanding, and helpful.

My sympathies for the struggle of raising a special needs child. Don't get discouraged! Down Syndrome children are some of the most amazing special needs kids I've worked with and I am convinced that each of them has their own private angel walking around with them daily.

Have you joined LinkIn network? Join the network (it's free) at www.LinkedIn.com and then do a group search for Down Syndrome support groups...I found at least 20 that you could join and receive the benefits of networking specifically with those who are in your same situation. Some of the better once I found were "Community of Down Syndrome's friends" (specifically geared towards supporting pDown Syndrome's parents and relatives) and Down's Syndrome Association",

As for your goal setting, I'm not sure if this is what you're looking for or not but I actually had a teacher express interest in using my calendaring/charting interactive website for these types of special needs children. So I thought I would pass along the info. You can see what we're about at www.mytimecalendars.com.

Basically, we offer completely customizable calendars and chore charts using clipart or your own uploaded images to represent events or chores in a childs day, week or month. They see the graphics and identify the picture with the event. The teacher thought it would be a great system for helping her special needs kids track events in their daily schedules but also better understand event sequencing and the various tasks they are responsible for throughout the day.

I hope this helps. Good luck...you are an amazing parent for tackling this head-on and being proactive with your childs support coordinator. I hope you are able to find another coordinator that will be a better fit for your son.

Are you a member of Sharing Down Syndrome Arizona? They have a website that includes a forum, so you can ask other moms of kids with DS and they would probably have lots of answers for you!

sharingds.org

You can also get on their mailing list, find out about events. If you never received a welcome packet (especially if your son was born out of state - they didn't visit you in the hospital ;), you can still receive a free welcome packet with very helpful information. And honestly, if you don't get enough responses, email or call Gina (pronounced Jinna) at gina at sharingds.org or call her at ###-###-#### and she can help you! They also have a parent email list. Anyways...hopefully this helps.

You can set goals about hygiene and personal things like how to tie a shoe, button a button...or a chore that helps you. Can it incorporate colors and numbers because you are teaching him something personal; like coloring and or art things?

I have three kids with autism and they get habilitation as well. The goals we have reflect "self-help" goals. What I do is look at what other kids that are "typical" developing and what my kids are still struggling with.

Without knowing your son, it is difficult for me to give you ideas about his levels, but i will give you some ideas of things we have done:
- JJ will respond when asked his name.
- JJ will be able to dress himself without physical help or prompts from others (eventually we changed this to no verbal prompts, and finally on his own).
- JJ will be able to wash his body without prompts (although for me I always did bathing and potty training stuff myself).

As far as respite goes, your goals don't affect it at all. If your son has ALTCS (if your son qualifies for Arizona Long-Term Care System - Arizona's medicaid system) than you should qualify for respite hours. For us we get 720 hours a year. Respite is a service that is offered to families because of the exhaustive nature of the additional responsibilities of taking care of a person that is considered "severe enough" to qualify for ALTCS. (The technical definition of one who qualifies for ALTCS is that they are at risk for institutionalization and the government has figured it is cheaper (and better) for such people to stay in their homes with a little assistance like habilitation and respite.

If you need more help, you might try contacting a habilitiation company to help you (our habilitiation supervisor is amazing). If you need any other help, you can contact me personally and I will help you some more.

Hi T., my soon to be step dtr is autistic and mildly retarded and gets respite and hab hours. I'm printing this off before I leave the office and will ask my fiance and our care provider and see if we can help...I'll get back with ya!!!!

Hi!
I work as a Habilitation therapist, and one thing I would reccomend is to look at it this way: since your son most likely already has (or will soon have) Speech, Occupational and Physical Therapists, to set Habilitation therapy apart, see it as help with his general everyday life skills. For instance, say you were going to have Grandma take him for the weekend, what types of things would he need help with to make that possible? Is it brushing his teeth, playing with another person, saying out loud what he needs? Maybe your habilitation therapist could work on all the steps of his bedtime routines, voicing his needs by using specific phrases, building attention span while playing with toys or playdough, that kind of thing. Anything you can think of that would allow him to become more independent with extra practice. For one 6 year-old boy with Autism I work these things: starting conversations & cooperating (so that he can make friends), voice volume control (to allow him to be in a regular classroom), tying shoes and brushing teeth (for more independence). I hope this helps a tiny bit,
Good luck!