Studies on Depression

I  read an article a number of years ago that discussed a study. It found that some moms of autistic children may be prone to depression. I have to tell you that really aggravated me. Not because the statement isn’t certainly true, but parents of autistic children certainly don’t have a corner on the depression market. Anyone who is the parent of a special needs child realizes that any parent of a special needs child, mother or father, may be prone to depression. When a parent comes to the realization that their child may be different there is almost always a sense of guilt and/or loss that can become a more serious depression. Moreover, the type of disability the child has makes a difference as to the level of depression and accompanying social anxiety. One study specifically goes into the level of social anxiety in parents of children with mental illness. That’s another one I can speak to.

Over the years I have become far more introverted than I ever was earlier in my life. I have a very tight knit core group of friends. When people are reaching out to me and I can frequently feel the anxiety rise. The harsh reality is that many of those people would likely be lovely, kinds souls. It’s never who is imagined in my minds eye however. I have this gremlin who tells me how horrified they will be at Katherine’s behavior, how they will knowingly tell me that Katherine’s disabilities are my fault and my doing and make me the social pariah of the eastern seaboard. Unrealistic? Completely!

Depression knows where to find your weak spots

My gremlin is pretty good at talking to me and convincing me he knows all – some kind of omniscient green thing with bumps. Think Sesame Street on a bad acid trip (please people, the acid piece is just expressive not actual) I’m guessing some of you have a “friend” like this who tells you similar things. Actually we all have a gremlin or two. The question is how to quiet the dang thing so he’s just aggravating background noise.
As a great therapist once told me, the voice only has as much power as you give it. I have the choice to listen to it and give it’s word credence. He also told me that the more I can distract this gremlin the better off I’d do. I do know this – the more I allow that gremlin to enter my thought process, the more anxious and depressed I become. Sometimes this only happens once every few months, some times it happens several times in a week. Kind of depends on a number of influences not the least of which is Katherine. This is especially true in a week where Katherine is having an especially rough time or I am battling windmills trying to get appropriate services in place.

The reality is I spend an overwhelming amount of my time focused in on how Katherine feels. How Katherine is doing. Getting Katherine what she needs, and so on that I really have to remember to dial in to how I feel. As it has been explained to me numerous times by that great therapist I don’t do anyone, especially Katherine, any good if I get myself stuck in the gremlin goo. (it’s supposed to be a visual, let your imagination run wild) This got me thinking about how I deal with this depression and how other parents can too.

Is it Depression? Everything is awful!

For a long time I didn’t even acknowledge it was depression. I wasn’t depressed – I was having a rough day (ok, so what if they strung together for days, weeks or months at a time) For a time, I needed medication and therapy. I tell you this because maybe knowing there’s another mom out there who needed help might make you feel less alone.

By the time I came off the meds, my therapist and I had developed a varied list of things I could do to fight off the blues which we all inevitably feel from time to time to keep it from gaining control. Sometimes I have less than 5 minutes sometimes I have a couple of hours after the kids are in bed. Here’s my list of 10 things to combat the onset of depression for a starter.

• Take a walk – or a jog – or a bike ride – any exercise at all will help. It doesn’t even need to be a long one. It actually releases endorphins which combat the blues
• Read – I don’t mean the next diagnosticsometimes all it takes is a few minutes with my mind in a good novel to remove the negative and break the cycle
• Start a project – make sure the project can be broken into multiple pieces – your the mom of a special needs child – you’re not likely to have an 8 hour stretch you can devote to a project – scrapbooking, redecorating a room, reorganizing some files, start a garden – I started this blog.
• Sleep – if I have time for a nap – even a ½ hour can make huge differences in my outlook
• Take out a cookbook or go online and find a recipe and dare to try something new
• Take a big pillow and scream as loud as you can into it – sounds ridiculous and you may feel like an idiot the first couple of times but the primal release it gives – well there’s nothing quite like it.
• Eat well – sometimes I realize my mood is because all I’ve had all day is a cup of coffee – I don’t mean binge – I mean make sure you’ve fed yourself a healthy meal to give you the energy your body needs.
• Cry – oh I know, that sounds ridiculous – but honestly it releases that pent up sadness in a natural way – you honestly can feel better just having a good cry.
• Help Someone Else – volunteer to help the elderly, work on a community service project, donate time to a food bank. Yes, your life is hard – there are different kinds hard. Helping someone else can give you a real boost.
• Music – listen to a favorite CD – better yet, sing and dance along. Think Meredith Grey on Grey’s Anatomy. It’s ok, if you can’t sing and dance just don’t do it around anyone other than your 2 year old who will just love the performance no matter what

Depression is real and is no sign of weakness

Please keep in mind that there are symptoms to more major depression. According to the Royal College of Psychiatrists, you are likely to be in a more significant depression if your feelings of depression don’t go away quickly and they are so bad that they interfere with their everyday life. If you are feeling 5 or 6 of the below feelings I would strongly encourage you to seek out further help if you:

• feel unhappy most of the time (but may feel a little better in the evenings)
• lose interest in life and can’t enjoy anything
• find it harder to make decisions
• can’t cope with things that you used to
• feel utterly tired
• feel restless and agitated
• lose appetite and weight (some people find they do the reverse and put on weight)
• take 1-2 hours to get off to sleep, and then wake up earlier than usual
• lose interest in sex
• lose your self-confidence
• feel useless, inadequate and hopeless
• avoid other people
• feel irritable
• feel worse at a particular time each day, usually in the morning
• think of suicide.

Taking care of our kids is hard work. Taking care of yourself is critical to your child’s well being and overall success. Talk to a spouse, trusted friend or clergy member if you are experiencing the problems above. They can help you find your way to the proper help. It’s NOT weakness. You did NOTHING wrong. You CAN overcome it with the proper help. Let’s help one anther by using the comments section to add what you use to fight off the blues as well!

Strokes happen in infants and children too

Katherine’s stroke was diagnosed at about 1.5 days old. Her father and I were insistent that there was a problem.  Doctors told us that all our observations were incorrect. They insisted that all the signs we were seeing were caused by “in-utero positioning”. They assured us she’d be fine once she got used to being out of the confines of the womb. Thanks to the nurses who took our concerns seriously, a seizure was witnessed and a CT Scan confirmed our worst fears. Uh, yea, RIGHT! The stroke laid waste to ½ of her brain and my dreams, of which I’ve long since forgotten.

Once they understood the very serious nature of what had happened to Katherine, they recommend that we place her in an institution. They told us that she would never walk, never talk, never function on her own in any meaningful way. They explained that if we placed her now, it would be easier on us. After an expletive laden tirade to the doctor who had also told us that it was just in-utero positioning, I requested he not darken my doorstep again. That was probably more about denial than anything else, but at the core of my being I was enraged. I was determined to prove him all of them wrong.

Early Childhood Intervention was going to be required

It was right then and there that we were going to explore what early childhood intervention options were available to her. I didn’t know it was referred to as early childhood intervention at that point. I just knew a combination of therapies that would give her a fighting chance.  It made all difference in the world in terms of where she is today. The next stop was Doctor was the head of Neurology at the hospital.

She was an amazing woman that got Katherine set up with therapy services. Katherine started when she was 3 months old with physical therapy three days a week. We gradually added Occupational Therapy and then Speech therapy when she failed to start talking.

She referred us to a Developmental Pediatrician For the record, she now talks (too much for her own good sometimes) walks (even though she needs a brace and has a noticeable gait), has friends, takes dance and yoga classes, plays basketball, sings songs from every musical she can get her hands on and brings a whole lot of people a whole lot of joy.

Parents and therapists both carried out the intervention toward individualized goals for each child, and worked collaboratively to improve how the children were responding socially, playing with toys, and communicating,” said Milani Smith, associate director of the UW Autism Center and a study co-author. “Parents are taught strategies for capturing their children’s attention and promoting communication. By using these strategies throughout the day, the children were offered many opportunities to learn to interact with others.

 ~Autism Speaks

Not everyone has a child that has such significant deficits and thank God for that. It does not diminish what early childhood intervention and the indefatigable efforts of parents and caregivers can make to the life of a child. Parents and therapists working together make significant improvements

Be your child’s best advocate

Is your child not progressing and reaching milestones as they should be? Can you just “feel” something isn’t right? Has your child started to avoid eye contact? Are they not speaking yet? Are they withdrawn or unemotional? Do they respond to their name? Do they seem completely undisturbed or startled by loud noises? Are they not walking even at a year and a half? Trust your instincts. Talk to your pediatrician. If they don’t listen and you just know in your gut something isn’t right, ask them for a referral to your state’s early intervention program. Have your child evaluated by them. Federal law requires that all states have an early intervention program for children 0-3. You can find a guide to milestones here.

Early Childhood Intervention and IDEA

Early Childhood Intervention programs are established by Part C of the Individuals with Disabilities Education Act (IDEA). It guarantees all eligible children, through evaluation and diagnosis of a physical and/or mental condition that will likely or has led to a developmental delays, will have access to services. Services are designed to advance the development of children. IDEA ensures services are provided to children with disabilities in each state and US territories. The law governs how states and public agencies provide  services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B. You will find early intervention by state and territories can be found by clicking here.

Maybe your child is just a “late bloomer”. But, if by chance that gut instinct we parents have is right….having those concerns evaluated will be the best gift you ever give your child. Early intervention can mean quick resolution to numerous delays, and can mean huge differences in outcome for more significant ones. At worst you’ll get some peace of mind about the late bloomer in your life. No time like the present to make that call. Share your experiences below so we can all learn from them.

 

A trust is the legal relationship created when a person (the “settlor”) places assets under the control of a person (the “trustee”) for the benefit of some other person or people (the “beneficiaries”) or for a specified purpose.

The assets transferred to the trustees become their property, but they hold the assets on trust for the beneficiaries. The trustees are therefore the nominal owners of the property, but they have a legal obligation to deal with the property in the manner set out in the trust deed.

  ~How To Law

The trust is used to make sure that the beneficiary’s needs are met without losing access to government programs that would be critical to their long term care. These trusts are also commonly referred to as Supplemental Needs Trust because the assets in it are meant to supplement what the beneficiary gets from the government.

Why we needed a Special Needs Trust

By the time she was 14, caring for Katherine had become increasingly difficult….dare I say almost impossible. We had been treating her behavior in any number of ways since she was 9. It had reached a point where we were having an impossible time keeping everyone safe. We needed help,governmental assistance type help. I knew eventually she would need this type of help, SSI at the very least. It’s hard to accept that your child is going to be dependent on others for the rest of their life. You want your child to have a future that leads to independence and a self guided life. There are plenty of people where that is a real possibility. Katherine just isn’t one of them. She will forever need someone to be with her and caring for her full time. She will always need assistance to function in society and I don’t want her winding up warehoused in some nursing home or other such setting. There will also be a day where I will no longer be there for her. I’ll need to be able to have a system in place to protect her. I thought we were still several years away from looking at that. Well, I was SO wrong. We needed these assistance programs to try and keep Katherine home and all of us safe – NOW! 

It had the potential to be the equivalent of an atom bomb, just waiting to go off – destroying everything in it’s wake.

I became aware of Special Needs Trusts about the time Katherine hit the age of 15. Katherine has an amazing extended family who want to make sure she is provided for, to help care for her, by leaving her money in their wills. When she was little, it seemed like a blessing. As she got older and we needed the government assistance, I suddenly realized what a catastrophic kindness it could be. It had the potential to be the equivalent of an atom bomb, just waiting to go off – destroying everything in it’s wake. We were going have to fast track the plan to get her protected from all these wonderfully generous people. Doesn’t that sound awful?! And that’s how we found ourselves needing a Special Needs Trust.

Katherine needed services we could only get with a Medicaid waiver. The Medicaid waiver is is an ability to use Medicaid in ways outside of the general parameters of Medicaid to get essential services for a person with disabilities. (I promise to do a post on waivers in the near future.  It’s a really important subject). She absolutely needed to have Medicaid to have access to the waiver programs so we could keep her living within the community. It was critical that she not have assets that could disqualify her. A special needs trust was the vehicle that would keep her safely on the Medicaid waiver, and still allow myself and extended family members to assure Katherine was provided for now and long after we were all gone.

A Special Needs Trust or Supplemental Needs Trust (SNT’s) as discussed above are for persons

with a significant and chronic or persistent disability. Assets in a trust are not considered the property of the beneficiary (the person with special needs) of the trust. It protects the beneficiary’s ability to qualify for government assistance (SSI, Medicaid, vocational rehab, housing assistance, or any other assistance) that is based on financial need or assets. These programs currently require that the person must have less than $2,000 in personal assets. 

This is NOT a DIY project

There are plenty of places online offering you forms to fill out. This is not a place for cost cutting measures. The money spent setting a trust up properly will protect your child as the years go on. Not setting it up correctly is an incredibly risky proposition. You can find places that will tell you you can do it yourself. I will just tell you most of them have a do it yourself kit to sell. The laws governing these trusts also vary from state to state so it’s not a one size fits all solution. PLEASE do not be what my mother would have called penny wise, pound foolish.

All doctors are not created equal… 

…and just as this statement is true, not just any attorney should be drafting a special needs trust. Just like doctors have specialties, there are attorneys who specialize in this area of law and you can find them for your area at Special Needs Planners or Special Needs Alliance.

To revoke or not to revoke that is the question.

Actually it’s not that easy of a question. Revokable trusts can be taken apart, funds can be removed for reasons other than caring for the beneficiary. Irrevocable trusts cannot. This is a WAY over simplification of this issue but know it exists. Federal guidelines have very specific rules regarding this – consult with a knowledgeable attorney

Buy one Get one Free 

Nope. Sorry.  It’s not a canned goods sale at your local supermarket. If there are two family members who are disabled and need trusts, you will need to set up two trusts.  The federal requirement is that the document detail what constitutes supplemental care for the beneficiary.  No two people will be alike in their needs – not even identical twins.

Yours, mine, theirs 

Where the funds come from DOES make a difference. Funds that belong to the individual who will be the beneficiary of the trust are different than funds from a parent/grandparent setting up a trust for the beneficiary. As such they are different types of trusts and may make a difference in terms of access to benefits. This would be a whole law lesson – if it applies to your scenario though you should be certain to consult with an attorney specializing in special needs/elder law.

I’ll just leave the money to someone else 

There term is disinheritance. The theory goes:

1. You cut your disabled child out of the will.
2. You then leave the money you would have left to your special needs child to a sibling or other trusted individual
3. This trusted individual will use that money exclusively to help your child.

Even if we assume this person will be completely honest and trustworthy, it doesn’t protect those funds! You’ve left the money to this person. That means they can do whatever they want with the money. It also means that the law looks at it as their money. If this individual is wiped out financially by a lawsuit, the money you left them gets lost too. If they get a divorce, the judge will consider that their money. Suppose half of all they own goes to their spouse during the divorce, your money is part of that too…because it isn’t your money. It’s their money.  It’s NOT a good solution if you want certainty that the money will be used for your child.

Who to Trust

Every trust has a trustee. This is someone who makes decisions about what the trust will and will not pay for. There have guidelines about what the money can be used for (both by the federal government and the people who set up the trust) and it’s their job to follow them. There are basically two choices of people to name as a trustee: family member/friend or bank. My personal preference was for an individual. I feel they will know Katherine and better assess her needs. I didn’t want that job left to some sterile institution if I could help it. In the Trust we set up, I have named 3 different trustees. Each trustee is in place to cover in the absence or inability of the previous one. I suggest you have at least one person to back up your first choice. I have a bank as the choice of last resort. The state where I currently live also has something called a Trust Protector. The Trust Protector’s purpose is to protect the interests of the beneficiary and achieving the objectives of the trust. The objectives are outlined in the trust and usually in the Letter of Intent. (another article) The Trust Protector is a safeguard position, in the unlikely event that the trust is not being utilized properly by the trustee.

Money Trees could be useful to fund a Special Needs Trust

Obviously money doesn’t grow on trees and when you’re already supporting a special needs child it can be even more difficult to budget another line item. There is another way. You can fund the Special Needs Trust at the time of death with the items you leave behind – the sale of a house and other assets. Some people use life insurance policies instead of or in addition to. You can also use a lesser known life insurance policy called a “Second to Die” policy. The Second to Die policy is less expensive because it only pays after both individuals (usually a husband and wife) are deceased. There are a number of creative ways to fund the Special Needs Trust. Your attorney can give you some ideas and probably connect you with someone who specializes in financial planning for a child with special needs. (MetLife has one such program.  I have no affiliation with them)

As my last thought on the subject, I can not emphasize enough the need for you to use an attorney! Not just any attorney however. You should specifically find a lawyer who concentrates his or her practice on Special Needs/Elder Law. If you’re considering this, it’s important to you to protect your child. This will help ensure that protection is the best available.

I hope that this summary of the types of trusts available to protect your special needs child has been helpful. If it has been, please share it or leave a comment.

I shared the story Welcome to Holland by Emily Perl Kingsley a decade ago, when I started the Special Parent. It had been shared with me about a decade before that. Katherine would have been about 3-4 years of age. It moved me. I felt here was someone who understood what it was like to be thrown into the middle of the ocean without knowing how to swim. As the years progressed, I just wondered where Holland had gone. Holland has lovely windmills and scenic bicycle rides through fields of tulips. It had rides in boats through canals and wooden shoes. I’m not suggesting the early years were easy, but rather that the years got harder and harder.

This sure doesn’t feel like a Welcome to Holland…

People view this story through different lenses. It’s hardly like we’re all cut from the same cloth. We’ve all come to this situation with our own backstory. Our own unique relationships, childhoods, friends, family, work, faith…all those things that make us, us. There’s also the fact that a trip that started in Holland doesn’t always stay there. The trip to Holland I started on when my daughter was little, twisted and turned it’s way through Eastern Europe in a cart, pulled by a donkey on unpaved roads, and made it’s way into Southeast Asia and was a little completely like Cambodia – with all it’s landmines – as she reached the double digits. And yea…I stepped on a LOT of landmines. I clearly wasn’t reading the map properly, because I got knocked on my A$$ constantly (sometimes literally)

Am I just a jaded person after so many years?

I was glad to see that others didn’t see this the same way either. I saw this beautiful and honest article written by Beth Craver on The Mighty.  I Once Hated ‘Welcome to Holland.’ This Changed My Mind.  Beth seems to have taken a different route on her journey, but we both had a level of appreciation for the story. A different person with a different journey. I enjoyed reading it

Beth seems to have taken the itinerary and landed way outside of Holland.  As we all know, no one plans the exact same trip or finds the same difficulties along the way. It’s just like Not An Autism Mom reminded me with her awesome post  Autism is Nothing Like Going to Holland. I think she and I might have crossed paths at some point. Heaven knows our itineraries seem to have intersected.

Ok, but what are you getting at?

I want you to know you shouldn’t get discouraged if your trip isn’t looking like Holland OR Italy, or even the south of France. If you’re there, chances are there are other special needs parents there as well. It’s just a question of seeking them out. They may not live nearby, but thanks to the internet, they are still accessible. There are plenty of places like here and at The Special Parent on Facebook where you can find them. The special needs community is a truly remarkable group of people. You’ll find that most can’t wait to welcome you and help you get to where you’re going.

You should also know that as we interact with others on this journey, that even while in the same metaphorical country, we’re all on our own path. If we’re new to the country, we may not even speak the same language. Ours is not to judge the path others are on, but to make sure we give them a hand up and lend them our map along the way. Too often I see really great parents on all sorts of forums to Facebook forgetting that we’re supposed to be here supporting one another. Regardless of the prism you see your life in as a special needs parent, it’s good to remember that it’s easier to travel the world with a friend.

For those of you that have reached the end of this post and you’re thinking to yourself what the heck is this story she’s spent the entire post talking about…check it out below.

I’m not sure where you are on your journey with your special needs child. It could be:

• You’re pregnant, and you’ve found out that you’re going to have a special needs child.
• You’re still reeling from the shock that life with your new baby isn’t going to be as you had dreamed and planned.
• You’re grappling with new information about your special needs child.
• Your child developed special needs after an accident or illness, and you are dealing with a whole new world.
• You’ve been doing this for a long time but you’re encountering new struggles.
• You’ve made it to high school, and suddenly you realize that graduation is around the corner.  “Now what?” is the question weighing on your heart.
• You’re getting older and afraid of what will happen when you’re no longer here.

Walking with a friend in the dark is better than walking alone in the light

~Helen Keller

My mission is to grow The Special Parent to be a real resource for parents with special needs children of all ages. I know this blog won’t be all things to all people. It can’t possibly be. I hope that it will speak to you and your situation. Perhaps the review of a book or a retelling of one of many IEP meetings I’ve attended will give you a place to go – or a place to avoid! Most of all, I hope that we can take that journey together, and somehow it will make navigating the system of the special needs/disability world you’re about to travel, just a little bit easier.