thespecialparent.comSpecial People Parenting Special Kids

As parents of special needs kids, no matter the age, many of us do far more care tasks than we might otherwise with a child of the same age. Whether it’s because your child has physical limitations or intellectual limitations it’s really immaterial. The reality is that sometimes the toll of this care sneaks up on you and you don’t even realize it.

This past couple of weeks has been something like that. I think that it really hit home for me when I got a fundraiser mailing from the Alzheimer’s Association. On the back of one of their pamphlets was something well worth reprinting – it’s the 10 Symptoms of Caregiver Stress. Of course this for them is based on caring for an elderly loved one but it seemed so relevant to me I thought I’d just modify it some to show you how applicable it is to us.

1. Denial – about the disability and its effects on the person.
2. Anger – at the person with the disability or others about any number of things – the injustice of it all, the level of available treatments, the prognosis, the long term ramifications, the drain on your family’s resources, financially and emotionally and about a million other things - and that people don’t understand what’s going on.
3. Social Withdrawal – from friends and activities that once brought pleasure
4. Anxiety – about facing another day and what the future holds
5. Depression – begins to affect the ability to cope
6. Exhaustion – makes it nearly impossible to complete necessary daily tasks
7. Sleeplessness - caused by a never-ending list of concerns
8. Irritability – leads to moodiness and triggers negative responses
9. Lack of Concentration – makes it difficult to perform familiar tasks.
10. Health Problems – begin to take their toll, both mentally and physically. Usually it’s not an overwhelming illness – just the feeling you just haven’t felt “right” in some time.

On this last day of the work week I’d remind you that an intregal part of caring for your child is caring for yourself. It’s always hard to “find” time to do this…so many demands on our time are always pulling at us looking for attention. Make it a priority to take some ‘me’ time this weekend, quiet your mind and relax. I’m not even talking a half hour – 5 minutes is a great start.

One of the ways I am working at taking time in my own life to try and change the stress is meditation. I know you all have this vision of me legs crossed, palms facing upward chanting UHM but it’s not that it at all. As it was originally explained to me by a great physical therapist is that it’s concentrated relaxation. One of the sites I have found most useful (and Forbes actually named one of the best of the web) is Learning Meditation.

Within the Meditation Room there are numerous available meditations for adults and children alike. Some are only 2-3 minutes long – some are as long at 10 minutes and there’s a wide variety in between. What I like is they are attainable even with only a short amount of time. The benefit to me has been noticeable and I hope it will be for you as well. It requires Real Player to listen to the audios or it has a printed version of the words that you can use while listening to your own relaxing music (think Enya, NOT Mettalica)

Mostly where I think it’s helped me is with my irritability (although my husband may argue this point ) but I think it is starting to move over into the sleeplessness part of life as well. I seem to be having a slightly easier time of falling asleep. Who knows where it might benefit you? I know that no one should refuse themselves 5 minutes a day (at a minimum) to regroup and refresh. What have you got to lose?

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It’s been an eternity it seems since I was able to write here. On incredibly short notice we packed the family up and drove to New Jersey from Georgia. It’s a 900+ mile trip and a bit over 16 hours in a car. Tons of fun with a toddler and a special needs child. Ok so maybe not. It was only made more difficult because of everyone was nervous about how Joan was going to be when we got there. Joan has been like a mother to me for longer than my daughter has been alive. Joan has been the grandmother on my side of the family to Katherine. Joan’s children, extended family and friends have all “adopted” me as Joan’s 5th child. 

Joan is ill, how ill is to be determined although nothing suggests that long term it will be good. How to address this with Katherine has been a discussion with extraordinary emotion over the past week. Not only am I worrying how to deal with making this easier on Katherine but I am worrying about making sure that my own personal emotions are not too overwhelming for Katherine. Losing someone you love is never easy. Learning how to lose someone you love is something we all eventually need to cope with. So not only do we have an journey to New Jersey but a journey through love and loss as well.

Of course I’ve looked things up online, and I’ve had a conversation with her treating doctors as well. Actually much of the information they gave me was intuitive to me for the most part. Mostly, what the doctors reminded me was that I didn’t need to put the cart in front of the horse. Just like life has a progression we can dose the information out little by little without clobbering her with all of it at once. Some of the information she’ll ask for as she needs it, other of it we can present in bite size pieces so that she has time to digest it.

None of us knows how much time we have left on this earth, nor do we know how much time the ones we love have. I know that it’s times like this that remind me of how important it is that we make the time to say I love you and to show it as often as possible. Taking time to drive to New Jersey through the rest of life into turmoil – for everyone and everything. Honestly though, I’d do it again in a heartbeat. In most ways it was an incredibly selfish trip – I needed to go see my mother. I just hope that through words spoken and unspoken she knows how much we all love her. I hope that Katherine remembers how important it is to not just say I love you but show it by your actions. I hope that the example set helps her learn that lesson well.

I appreciate the emails I’ve gotten from many of you inquiring about my absence. I am sorry it took so long to respond to you. Your kindness was appreciated. Hopefully I’ll be around for a bit now. I know that you all understand the delicate balance that already exists in being a special parent and additional things can really throw things completely out of whack. Well, we’re whacked but back. Hopefully you’ll take today to tell someone you love you’re thinking of them.

Katherine and I are making cards (coloring pictures and putting “love, Katherine” at the bottom) for some people she loves as tomorrow’s project. Like driving 900 miles via the US Postal Service. Or an email from someone you’ve never met but worries about you anyway.

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25% of parents with Special Needs children have to significantly reduce their role at work or stop working.

A ‘recent’ survey (2005-2006) by the Health Resources and Services Administration which is a part of the US Department of Health and Human Services found that 14% of  all US children had special needs. Children with Special Needs was defined in this survey as as having or being at risk for:

chronic physical, developmental, behavioral, or emotional conditions that have lasted or are expected to last at least 12 months.

In this report there are 6 ‘Core Outcomes: Key Measures of Performance’

• Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;
• Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
• Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
• Children are screened early and continuously for special health care needs;
• Community-based services for children and youth with special health care needs are organized so families can use them easily;
• Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence

The reality is that on an overall basis we are failing this very prevalent population.  When you consider that to adequately care for our special needs children that ¼ of the population must significantly reduce or stop working all together to care for their children – something is just wrong.

I have been and continue to be one of that 25% who left work in order to care for my child. Could I have continued to work? Possibly. Let me see, I’m sorry boss person, I need to leave work on Monday from 9am-noon and Tuesday from 2:30 until close and Wednesday from 9am until 1:00pm and on Thursday from 3:00 until close and oh Friday – I can actually work a full day. And that is just this week. I’ll get you next week’s schedule by Wednesday. No problem? Awesome. Ya right. It’s why I’m at home now.

I held a good job, and it provided well for my daughter and myself. It’s actually the reason I’m in Georgia. Unfortunately, as Katherine’s needs escalated, my ability to maintain my job became increasingly difficult. It’s hard to be at work when you know your child is in a hospital and you aren’t there for them. It’s hard to explain to your boss why you need to leave a couple of hours early so that you can miss the traffic so you can actually make it to the hospital. And that’s just in a crisis situation – the day to day is just overwhelming some weeks. Four years later I’m doing better. With Katherine’s waiver providing some secure support, I might be able to go back to work part time at least but I haven’t reached that comfort level yet and with her brother here that’s kind of stalled that whole conversation. It’s amusing to me though the questions they ask for impact on family

• CSHCN (Children with Special Health Care Needs) whose families pay $1,000 or more out of pocket in medical expenses per year for the child
• CSHCN whose conditions cause financial problems for the family
• CSHCN whose families spend 11 or more hours per week providing or coordinating the child’s health care
• CSHCN whose conditions cause family members to cut back or stop working

Let’s see – you’re a single parent how do you think you’re going to do cutting back or stopping work while you have a special needs child? Can you say welfare? Can you say that this is nuts!! Honestly though some of these numbers seem insanely optimistic in terms of delivery of service. In any event it’s a report you should check out. The links below provide you with access to the Summary as well as the State by State data so you can see how your state did. There is a PDF available of the report. If you don’t already have it download your free copy of Adobe Acrobat reader to access the PDF. You’ll never be sorry to have that handy gadget piece of software – indispendible!

Summary of report
State by State data – see how your state did
National Survey of Children with Special Health Care Needs Chartbook
Free Acrobat reader

The reality is no matter how rosy a picture they try to paint there are far too many children and families being failed by this system. They deserve better. We deserve better. We need to tell those with the power to do something to do it.

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One of Katherine’s diagnoses is bipolar disorder. Even if you are uncertain of bipolar as a diagnosis for a child (and yes there is a group who doesn’t live with my daughter who thinks that bipolar in childhood is a misnomer) without question she has a mental illness disorder NOS (NOS=Not Otherwise Specified is a term frequently used in various mental illness disorders to bundle those who don’t neatly fit a specific definition for a disorder).

Because of this I think I am more acutely aware of the inequity in insurance benefits for medical needs versus mental health needs. All too often hospitalizations that Katherine needed for her mental health were cut off far more quickly than they would have been if she had been physically ill to the point where it endangered her well being. It’s unfortunate that discrimination enters this arena as well. It’s even more unfortunate that there is no parity in benefits because too often the cost of yo-yo admissions is likely costlier in the long run than it might be otherwise, not to even get into what this policy does to the individuals and their families when adequate care can not be obtained. That’s why I felt it important to let everyone I could about a very important bill that tentatively scheduled for vote on Wednesday March 5th.

The bill is called the Paul Wellstone Mental Health and Addiction Equity Act of 2007, or HR 1424. I think that Susan Resko, the executive director of the Child and Adolescent Bipolar Foundation detailed it best when she wrote:

If parity is not passed this year, there is serious concern that Congress will not take the matter up again for a number of years. Because of this concern, it is vital that mental health parity pass now.

The legislation addresses the discrimination in group health plans against persons with mental health or substance use disorders. This bill would expand the Mental Health Parity Act of 1996 by prohibiting group health plans from imposing treatment or financial limitations on mental health benefits that are different from those applied to medical/surgical services. The legislation closes the loopholes that allow discrimination in the co-payment, coinsurance, deductible, maximum out-of-pocket limit and day and visit limits. It applies only to group health plans already providing mental health benefits, and excludes (as does current law) health plans sponsored by employers of fewer than 50 people.

The Senate version of the bill passed the Senate by unanimous consent on September 18th, 2007. The House must pass a bill in order for legislation to move forward.

I would urge you to call your U.S. Representative Tuesday, March 4, to request that he/she vote “Yes” on the Paul Wellstone Mental Health and Addiction Equity Act, and “No” on any amendments to weaken the bill.

To locate your US Representative’s number, click here. When connected, ask for the Health Legislative Assistant. If you leave a voicemail, include your name and phone number.

Mental Health America recommends the following simple script if you are unsure of exactly what to say to your representative:

I am calling to ask that the Representative vote for H.R. 1424, the Paul Wellstone Mental Health & Addiction Equity Act. Parity is needed to end insurance discrimination and save lives.

If you’d like to read more about this life saving legislation you can check out the Campaign to Insure Mental Health and Addiction Equity . There is also a form here where you can email your individual representatives as well.

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