KIDS CONNECT: to help with behavior skills for children.

Looking for opportunities to develop social, communication, and adaptive behavior skills? Here we have KIDS CONNECT. KIDS CONNECT is a program that provides specialized services at licensed childcare centers that can help children with special needs participate,

play and learn, along with their typically-developing peers. Licensed childcare centers and after-school care programs contract with the State to provide this service.
Eligible children are those who:
1 - Medicaid eligilbe
2 - age 6 weeks to 16 years (birthday)
3 - have a potentially chronic condition in the areas of cognitive, developmental, medical, psychiatric
4 - symptoms consisten with DSM-IV or ICD-9 diagnosis
5 - are not entitled to services through Special Education, Early Intervention or Head Start
6 - needs therapeutic services to participate in a care setting and are expected to succeed
7 - do not need 1 to 1 support
8 - can improve in communication, socialization, behavioral & cognitive development
9 - has been previously dismissed from or unable to participate in a child/youth care setting.

There is no cost to families in our area. If your child is in a child or youth care program, you can ask if there is a similar program to take advantage of, or contact a local social service agency.

Looking for a PASS (Personal Assistance Services and Supports)?

PASS can help help families of special needs children with their daily life skills, improving accomplishing daily life activities, improve safety skills, & participate in social situations.

These services can be in the community or in the home by a direct support worker who can be hired by the family and manages their hours. Of course, they help write the Care Plan and keep in touch with the agency staff. Families get help from a PASS agency or an online resource to do this. Training & supervision of the support worker is supplied by the family.

Here are the eligibility requirments:
* A child must meet the following requirements to be eligible for Personal Assistance Services and Supports (PASS). He or she must be eligible for Medical Assistance,
* under age 21
* a Rhode Island resident (please check with a your local social service agency to see if there is a comperable service)
* live at home, and
* have a chronic condition- cognitive, physical, developmental and/or psychiatric that is moderate to severe.

There is no cost for Medicaid eligible children.

A PASS worker implements a Care Plan to provide guidance & direction; provides opportunity for social interaction; provides hands-on assistance; keeps progress notes on service plan goals; provides information to families on service plan goals. He or she also needs to attend on-going training with a PASS agency.

Again, contact your state social service agency asking if there are any similar programs to take advantage of. Another service that may be of help is 'home based therapeutic services' or HBTS.

Just because you might need a smile today!!!

Flixxy.com Take a few minutes to watch these 'singers' entertain with a Christmas song. You'll love the bass singer.

The Holidays Can Help Show You How Your Parents Live.

This time of year is a great time to see where your elderly parents are with their health and living conditions. For those of us who live right in the area or with their parents and see them on a consistent basis, it can be hard for us to differentiate any changes. We see them in all their ups and downs, from stomach aches, back aches, headaches; not being hungry, not being thirsty, no sleep, hours of sleep. It is just another day - sometimes.

During visits from siblings or relatives and friends who are NOT around all the time, take the opportunity to allow them to spend time with the parents. Let them see them for a few hours; whether you leave the house or not, let them cater to the folks. This way they can gain a perspective of how they are - they may see things you can't. Then sit and discuss how they find the parents, how they have changed between visits. I would find that sometimes my mom would do better with someone else; I probably drove her crazy at times. She would be able to remember different things and carry on better conversations with someone different. She would be more apt to say 'yes' to tea and a snack, walk a little more. On the other hand, some would comment on how often she repeated herself, would lose herself in a conversation, wouldn't remember a recent visit or appointment. So I would just put all the information together in a diary for the doctor to help me see what could be going on.

The ElderCarelink has some easy things to look for while visiting.

1. Do they seem depressed? If your parents are sleeping too much, have no interest in their hobbies, or have a decreased appetite, they may be suffering from depression. Ask someone who sees them frequently about their moods when you aren't there.
2. Are they having balance problems? If a parent is walking unsteadily, insist they see a doctor. Balance problems could be an early sign of an inner ear infection, bad joints or even dementia.
3. Have they lost a lot of weight? Look in their refrigerator and pantry to make sure they have nutritious food on hand. If eating isn't the issue, suggest they get a complete physical to discover the reason behind the weight loss.

I used to keep in mind that the holidays were tough on mom since dad and my grandparents had all passed and no matter how we tried to keep things light and busy and festive, there were always incidents that brought back memories - even as simple as one of the boys doing something that my dad used to do or seeing old pictures. These things are not inherently bad but can put someone in a depressed mood. We would just try to look at events that are coming up, like weddings or trips or visits from people who we haven't seen in a while. Another thing that helped was SKYPE. My husband and I would arrange times with out-of-state relatives, finding out when they would be home. We would contact them and mom would be able to see them and talk for however long they all lasted in front of the laptop. It really made her happy to be able to see them, they could talk about the old days and sometimes see each others children and grandchildren -- almost like being there!! Sometimes these 'visits' were far better than any gift in a box.
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Feeling down due to the death of a loved one? This might help.

This note came from a good friend of mine when she found out my mom and aunt passed away last year. She mentioned how it helped her that first Christmas after her parents passed away.

It really is beautiful. With Christmas edging close, I wanted to share it with you.
I can only hope it will help anyone else out there who may have lost a loved one.

My First Christmas in Heaven

I see the countless Christmas trees around the world below,
With tiny lights, like heaven's stars, reflecting on the snow,
The sight is so spectacular, please wipe away that tear,
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear,
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,
For it is beyond description, to hear the angels sing.
I know how much you miss me. I see the pain inside your heart,
But I am not so far away. We really aren't apart.
So be happy for me dear ones. You know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.
I send you each a special gift, from my heavenly home above,
I send you each a memory of my undying love.
After all, love is a gift, more than pure gold,
It was always more important in the stories Jesus told.
Please love and keep each other, as my Father said to do,
For I can't count the blessing or love He has for each of you.
So have a Merry Christmas and wipe away that tear,
Remember, I am spending Christmas with Jesus Christ this year.

It was followed by a credit to -- Ben aged 14.

She followed it with:

"Whether alive or dead, we belong to the Lord.
None of us lives for oneself, and no one dies for oneself.
For if we live, we live for the Lord, and if we die, we die for the Lord.
So then, whether we live or die, we are the Lord's. For this is why Christ died and
came to life, that He might be the Lord of both the dead and the living. For we
shall all stand before the judgement seat of God, for it is written:

'As I live', says the Lord, 'every knee shall bend before me, and every tongue shall
give praise to God.' So then each of us shall give an account of himself to God.
The Word of the Lord"

Pass it on to anyone who may be feeling the sorrow of losing someone.

Just a Beautiful Diversion on a Beautiful Day.

From the International Montreal Mosaiculture Exhibition, Summer 2013. Take a walk through 'My Virtual Garden'.

Giving Love to Your Parents in the Way They Understand.

Role reversal - parenting the parent, an emotional time for both the adult child and the parent says "A Place for Mom". Parents feel embarrassed and frustrated as they find they cannot do things for themselves; adult children show a sense of loss watching their mom or dad deteriorate.

"Clearly, the role reversal that comes with with aging and caregiving strains the parent-child relationship and puts it on difficult and unfamiliar turf. Because the relationship between you and your parent has changed dramatically, you may need to explore new ways of expressing love and receiving love that are appropriate to you and your parent’s current position and transformed roles."

(picture from A Place for Mom) The website cites a book by psychologist Dr. Gary Chapman written in 1995, 'The Five Languages of Love'. There is something he calls the 'Love Language' that each person has - a way of giving and showing love. He says with relationships changing you may need to find new ways to show love to your parents. He asks adult children to think back to their childhood to see how their parents expressed love to them, to see how to express that love back. I wish I thought about this more when mom was around - I would get so caught up in all the day-to-day stuff with her situation and my own family and what they needed, I'm sure I could have showed her more love than I did. Although I knew she knew I loved her by the way she talked to other people about what I was doing for her, I could have 'said' more to her about how I felt rather than assuming she knew BECAUSE I was doing what I was doing.

Back to Dr. Chapman and his theory:
1) Words of Affirmation - some elderly parents need to constantly hear "I love you". So spread compliments and 'I love you' when you can, 'words of approval and affirmation'.
2) Quality time - spend some time when they can have your undivided attention, turn off phones, pagers TVs. Spend some time going to lunch or dinner, go shopping, or just sit and talk.
3) Giving and Receiving Gifts - he is not talking about accumulating 'things' but sharing things - sending articles that someone might be interested in, sending flowers, making sure you remember a birthday or anniversary or just because. Mom would sometimes get excited if I found something she used all the time on sale and bought her a few of them!!
4) Acts of Service - this is from the parent who used to do things around the house or favors for people. We all know caregiving is an act of service but maybe a spouse can fix something around the house or yard, change the oil in a car, mow the lawn.
5) Physical touch - maybe mom or dad was a hugger. Hug or hold hands, walk arm-in-arm. Again, something else I should have done more of.

Think back and see how your parents acted and maybe by acting accordingly, it might help your changing relationship. I know the times we did share a hug, it was like a physical release, a slowing down of what we were doing, a "it's all going to be Ok" (even though things were going downhill). Even at the end (mom was not talking, eyes closed - like a coma state), before leaving the nursing home, I would give her a kiss, say 'I love you. It will all be Ok if you want to go'. Her body and face would relax a little. I think it was her way of saying back 'thank you, love you too'.

Looking for Ways for Mom and Dad to Make Tasks Easier?

I found on AgingCare.com some great items to help with daily tasks. Many elderly parents do not want to feel like they are losing their independence, have to count on people to do simple things that they use to do for themselves. How about:

A Gripmate Dexterity Aid.

A Lamp Switch Turner.

To see more, go here..

Lessons from a Veteran.

'A day late and a dollar short' - I have heard it before. Today is Veterans Day and I have been meaning to write earlier. Then I started thinking - why should we only make it a point to thank our veterans one day a year?? These men and women put themselves on the line everyday not just occasionally.

You have heard the stories about people buying soldiers lunch or coffee. There are organizations out there helping returning military find jobs. This has been a big push lately, gaining a lot of advertisement, including TV ads from Walmart. The Veterans Administration has a variety of sources to help vets find jobs or start a business.(picture from the VA site)

(picture from Today Show site) This morning on the Today Show there was a great story about Aaron Mankin, a US Marine, who was badly injured in Iraq. Over time he found himself at the UCLA Medical Center with Operation Mend, Healing the Wounds of War. This program, free of charge to the veteran, does all sorts of surgical procedures to help get military personnel back to their lives, as well as lending support to their families and caregivers. Right now, Aaron is spending time with his family and becoming a public speaker for Operation Mend. As the story goes, not only does it sound like he is on the mend with his injuries but also with his spirit; as he says "beauty is who you are" and “Life happens to you. But your power resides in the fact that you can choose how you respond to that.”

Any military personnel, active or retired, who fought in Iraq or Afganistan is eligible. If you know a veteran who may be interested in seeing if Operation Mend can help him or her, please click here. If you live in the area of the hospital, consider being a buddy family, helping with extra comfort support, dinners, just getting them out in the community for a change of pace.

Assisted Living the Way to Go??

(picture from 'A Place for Mom')

'A Place for Mom' awhile ago had an article about 7 things to think about if you are considering assisted living for an elderly parent. Assisted living came about a couple of decades ago - to make nursing homes not so institutional looking. They suggest you consider the following when looking at a facility: ( a quick review )

* Facilities offer several levels of care. Although regulated in all 50 states, there is no nationwide definition. Some provide light care while others can help those who are bedridden - it apparently depends on the communities' licensing.
* Every community is unique in its look & feel. They come in all shapes and sizes and designs. Some have a more quiet home feel while others are more socially active. Just because 2 look the same does not mean that they 'feel' the same.
* Pets may be Ok to bring. We keep hearing about pet therapy and how it can work wonders for the elderly population. So check with each facility to see about dogs and cats or birds and fish. Again, the communities' policies will vary.
* Assisted living costs may be lower than you think. According to the 2012 Cost of Senior Care Survey, the national average rate for a one-bedroom apartment is approximately $3,300 per month. While 86.2% of assisted living residents pay from their personal financial resources, 41 states offer “home and community-based waivers” that allow low-income residents to live in assisted living. More seniors are purchasing long-term care insurance to help plan for and finance their long-term care needs. Wartime veterans and their spouses may eligible for VA benefits known as Aid and Attendance that can offset the cost of care. A Place for Mom’s Guide to Financing Senior Care has details about creative financing plans that can make care affordable as well. Those with low income and assets may to need use Medicaid to pay for senior care. To explore this option, contact your local Area Agency on Aging Office, which can be located at www.eldercare.gov.
* Assisted Living is not the same as a nursing home. Best to have a medical professional evaluate your parent but there are some distinctions between these 2 types of facilities:
Assisted living residents are mainly independent but may need help with some daily living personal care tasks such as bathing and dressing, while nursing home residents tend to need 24-hour assistance with every activity of daily living.
Assisted living residents are mobile, while those who are bed ridden require nursing homes.
Nursing home residents generally have a single or semi-private room, while assisted living residents typically live in a studio or one bedroom apartment.
Nursing home residents require fully staffed, skilled nursing medical attention on a daily basis, while assisted living residents are more stable and do not need ongoing medical attention. (Medical care is distinct from personal care. For example, helping a resident toilet is considered personal care, while care for tracheotomy would be considered medical.)
* Many communities are catering to diverse cultures. They have communities that have residents from the same culture, while adhering to their needs of their language, foods, religion, holidays.
* Offering dementia care. Some in the early stages can live with the other residents but when they get worse, there is a specially designed area of the community with trained staff for their comfort and safety.

Take your time looking around and consider these differences. Be sure to ask questions of the staff while there. See under my topic of "Quest Speakers" -- a friend who is a Registered Nurse at a local private community wrote about what questions to ask when looking at a facility. That way you will have all the best information to make a good decision regarding placement.

A Checklist For Transitioning Parents - What I information I am passing on to other parents.

What? Me? A guest speaker? Will's teacher asked me to speak to other 'transitioning' parents this week at a school meeting, to offer my experiences and tips. As I told her, I hope I can live up to her expectations. This sent me looking through all the paperwork I have accumulated from transition seminars and workshops,

tips from school and information I just searched for, as well as looking over the applications I have already filed. So here is a list I would like to share to others who may be starting their 'adventure' down transition lane or to remind other families in the middle of it that the process can seem like it takes an eternity, can be confusing, can be frustrating (yes - you do have to deal with government agencies) but it is worth it.

Checklist: 1) file for Supplemental Security Income (SSI) - they can start receiving at age 18; 2) check in with the Office of Rehabilitative Services (ORS) which I did about 1 year before leaving and Department of Behavioral Healthcare, Developmental Disabiities & Hospitals (BHDDH) - I started doing this about 10 months before he turns 21; 3) apply for guardianship - this we did at age 18, and healthcare like Medicare or Medicaid - we are doing this now (probably a little later than we should have) with his caseworker; 4) check with your teachers about a vocational assessment being done; 5) get the Supports Intensity Scale (SIS) done - this we did in the late spring of this year. We did this early since someone told me it is a good idea to have his letter of funding with me when we went to visit agencies so they could see what help he is getting and how they can fit. After all these are done, you should be close to your child getting out of school at 21 years of age. Now you start looking at a variety of adult services whether they are day services or residential. Take your child with you so you can ask him/her, if they are verbal, what they like or do not like. If they are like Will, non-verbal, just watch for reactions like if they stop to look at things or seem extra interested in some activity or room; or do they just want to move on and get back to the car. Right now our state is redesigning their work programs so many agencies are not taking names. I was told by some agency directors that it is a good thing I am looking what is considered 'early' at programs because I still have a shot at getting in before more places stop accepting people or can get Will's name in so he can hopefully start fairly quickly after leaving school - there may not be a long span of time staying home and getting 'real comfy'.
We are seeing the light at the end of the tunnel, Will's name is in 2 agencies with people looking over his 'application' - hopefully he will split his time, one for work & one for community time. Besides talking to your child's teachers, go to any and all informational seminars and workshops. They do provide a wealth of information - both written (tons of brochures and booklets) and verbal (lots of agency representitives and don't forget the other parents). Some of these agencies can help you manage your way through all of this as well. I have several other posts regarding our experiences on my other blog so please feel free to check it out: A Lifetime of Special Needs

Gobble & Fa-La-La - 'Tis the Season to Get Stressful !

Ok - so you have your own stash of candy carefully hidden after Halloween, in a secret place where you can get sugared up and find nirvana at the same time. The wine has been carefully chosen (the story is that you want to sample some wines early so you can plan the Thanksgiving Day dinner in advance and make it the 'best day ever'). Phineas & Ferb would be so proud! The bottle of aspirin or ibuprofen is handy, has been since the creation of those superhero or princess costumes or the running around for the perfect 'look'.

Caregiver to caregiver - we know the real story!!! Down the homestretch, we see the next 2 holidays wherever we go. Between the foods and dinner ideas to the decorations and reminders of gift lists, we start to get bleary-eyed. OH BOY - how many directions can I get pulled in this year!!
As much as we like to handle things ourselves, to make sure things get done 'right' or 'just the way mom or dad likes it', we as caregivers need to let others into our world and help.

The Sams Club November/December 2013 Magazine has an article on 'Seasonal Stress' written by Michele Mongillo, RN, MSN. It acknowledges all the stressors that affect families: gatherings to plan, buying gifts, cooking for groups, organized activities. Of course all these are on top of the normal everyday, more personal tasks that need to get done for our elderly parents or special needs child. Michele has what are called 'tools and tactics' you can use to help relieve the stress.

*** COMMUNICATION: open the conversation with other family members about limited time to participate in some activities. Ask for help so you can accomplish your own tasks. When you send holiday cards, put in a note to say your time may be limited due to caregiving. Suggest other family members have the family meal at their home. Sometimes people are waiting to be asked to help, they may not want to intrude on your privacy.
*** PREPARATION: shop online for gifts or save catelogs that come through the mail so you can identify presents and go straight to the store to get them thus saving time wandering. Cook or bake things that can be frozen ahead of time. Check your calender for those days you need time off and ask a friend or family member to help. If that can't be done, try a local agency.
*** ENJOYMENT: make a choice and find a holiday tradition to 'keep' and let some others go; focus on those to make them memorable for all. Take time for yourself - exercise, get a massage, take time to slow down and just enjoy your loved one.

These next months need to be enjoyable for all. They can be with a little planning and recruitment from friends and family to stop in for a 'visit' so you can leave. Lastly - don't forget where you put the candy and wine. I'm not sure how much it helps at times but it certainly can't hurt in moderation.