Special Olympics

We are venturing into new territory for V. In a couple of weeks, we will try cycling with the Special Olympics of Montgomery County, Maryland. I happened to be looking for a psychiatrist closer to home than Baltimore and had called the ARC of Montgomery County to find out who their clients use. Haydee De Paula called me back and, in the course of a lengthy conversation, recommended that I call the coach of the cycling group and gave me his name and number. Since V's adapted aquatics coach had already mentioned Special Olympics to me for V, I gave him a call. He was very helpful and friendly. The group meets Saturday mornings from 9:00-10:30 for practice,starting in late June. He suggested that I fill out the medical registration forms and send them in to the Maryland Special Olympics office, and I shared my email address with him so that he could inform me of schedule information. The coach said that participants are required to wear helmets and to have a dedicated partner to ride/walk with them. He said that he had a spare adult tricycle that V could try at first and if she liked it then she would need to provide her own bike. The group meets at Bohrer Park or the Maryland Great Falls trail at the end of Falls Rd. So, we will try it out and see. It is the activity most likely to appeal to V since she has been learning to use the stationary bike the past few months. If it works out, it could provide some social opportunities for her with peers. Look for a link to the Special Olympics website and further updates on this.

Legal Considerations

Two issues arise as your disabled child grows up. First, when your child turns 18, hippa privacy laws require that medical information only be released directly to your son or daughter unless they have authorized you to receive it. If your child has limited communication skills, like mine, this can present a problem when you need to speak to someone over the phone on their behalf. Naturally, when you speak to a medical professional who can see your child in person, or who knows them, they will understand that you need to represent the interests of your child. However, there are times when you may need to ask for lab results over the phone, or speak to the health insurance provider, and the person on the other end of the phone won't speak to you because your child is an adult and this person can not see that your child can't speak for themselves. In this instance, it is helpful if you can establish that you have legal guardianship, if the severity of the disability requires that you communicate with medical professionals on behalf of your child.
I have obtained guardianship of V to address these issues. There have been times that written proof of my status as guardian have been required. I was lucky to have an attorney who is a personal friend and did the legal paperwork for free as a favor. I was lucky because it can cost thousands of dollars to hire an attorney to do this. If you can not afford to hire an attorney, it may be possible to represent yourself or get advice from a legal aide office. If you do pursue this avenue, a temporary guardian will be assigned to your child to represent their interests. You will be required to have at least 2 physicians complete documents that indicate to the court that guardianship is necessary. Then, once the guardianship is approved, you have to file forms once a year with the court, documenting what you are doing as guardian. This is not complicated or difficult.
The other legal matter to consider is the need to set up a Special Needs Trust for your child. If your child receives medical assistance or other services and you die unexpectedly, the inheritance that your child receives from your estate could disqualify them for the services that they depend upon and disrupt their lives in ways that would not be in their best interests. With a special needs trust, you can indicate that inheritance or life insurance proceeds go into the trust upon your death, where the funds will be managed by someone you designate, and where your child will be protected from the disruptions to services that might occur otherwise. If you do set up the trust, then make sure to provide grandparents or anyone else who might leave money or assets to your child with the trust account number and direct those parties to be sure to leave any inheritance to the trust rather than directly to your child. The special needs trust funds can be used to purchase the extras that the state will not provide for your child after you are gone.
It has given me peace of mind to have these matters taken care of and to know that I have done what I can to provide for the future. You don't have to fund the trust with more than $100.00 at the beginning. It won't be needed as long as you are around. If you are in my area and want the name of the attorney I used for the trust, I would be happy to share the name with you.

Always Finding Solutions- Incontinence Products

If a way can be found to have your child/ adult consistently use the toilet, that is the best solution, of course. But, if that has not been possible, for whatever reason, and you need to use disposable undergarments on your teen or adult child who is too large for the Goodnights products, then Depends and the store brand generic equivalents are useful. For years, I bought them for V, paying out of pocket, at local stores. No one told me that these products are covered by medicaid, can be ordered over the phone and delivered to your house on a monthly basis. I found this out when I discussed the need to cover the expense of these products in V's DDA budget for her adult plan. At that time a DDA employee explained that it would not be necessary since medicaid covers these products. Sure enough, I called Amerigroup, which is the plan that we have selected, and they referred me to Medi Rents & Sales. MediRents got a prescription for Depends disposable undergarments, chucks for bedding, and disposable latex or vinyl gloves, to be delivered monthly and fully covered by the insurance.
Unfortunately, after a year, MediRents decided not to carry Depends and switched to an inferior generic product that was ineffective for V. A few phone calls later, I located another company, Edgepark Medical Supplies, that could provide the products that I needed and we now use them instead. I like Edgepark better because they send the products out automatically, without waiting for me to call them to re-order. They have a website that shows the customer when the order was sent out and gives a tracking number so that the customer knows when the order will arrive. I never run out of supplies now and don't have to worry about whether a store will have the products in stock in the right size and absorbency, the way I used to.
So, if your child needs these products and you have medical assistance through a state waiver program, stop buying your incontinence products at the store. The only thing you need that is not covered is the wipes. See the link at the top of the page for Edgepark.

Always Finding Solutions - Hair

For many years, V had long hair, that was quite pretty when brushed, but always fell forward into her eyes and mouth. I always had to pull it back into ponytails or braids, but it continually tangled into knots and fell out into a halo around her face. She hated getting the knots combed out. A short hair cut was a problem because she wouldn't sit still in the stylists chair and I couldn't even be sure that she would stay in the salon at all for long enough to complete a haircut. A short cut would require frequent trims and all the problems presented by that. One day I had enough and decided to take the scissors to her hair and cut it short myself. It was okay, but not a good cut. However, it was much easier to wash and dry and it stayed out of her eyes and mouth and didn't get tangled. So, I set out to get her a decent short cut and maintain it properly. I went to our local mall where there is a Cartoon Cuts that specializes in cutting children's hair and I asked the receptionist if any of the stylists would consider making home visits to do hair cuts. One stylist only lived 5 minutes from my home and was delighted to come to our home to cut V's hair in her playroom. Now, V has her own stylist come to her room about once every 5-6 weeks to give her a trim and her hair looks very nice. It doesn't cost more than it would to go to the salon and it is far less stressful for everyone. I have recommended the stylist to V's nurse, who also has a disabled daughter, and this has solved a problem for her as well.
If visiting a hair salon is problematic for your child, give this a try. No more messy ponytails or unprofessional looking haircuts for V!

Always Finding Solutions - Clothing issues

Today I posted a new link to a company that solved a problem that has come up a couple of times over the years. Buck and Buck is an online store that sells clothing for residents of nursing homes, and all of the models are quite elderly. However, I have found that my daughter has shared some of the behavioral issues that are also associated with the behavior of patients with alzheimers, including disrobing at inappropriate times. This has always been the expression of frustration when there is nothing else available on which to physically act out that frustration. Buck and Buck sell jumpsuits that zip up the back and are made from the same material as a soft, warm sweatsuit. I found that by purchasing several of these jumpsuits and having her wear them for a while, she eventually learned that removing her clothing was not an option and stopped trying. Then, we were able to resume the use of her normal clothing. Under ordinary circumstances I buy clothing for V that can be most easily put on and taken off independently by her, but when the disrobing behavior escalates, the jumpsuits preserve her dignity in public and extinguishes the behavior without the need to physically block it by anyone. We all know that the less attention that is given to a behavior, the sooner it stops, and these products hold up to a lot of pulling without tearing. I tried some other products, but they tore at the seams when she pulled on them and didn't hold up well when laundered.
If your teenage or adult child has this problem, here is one solution to try that worked for me.
Do you have trouble taking your adult child into clothing store dressing rooms to try on outfits? Well, did you know that Lands End has an online store with a "virtual Model"? All you have to do is take your child's measurements and type them into the program. The program will show you what the outfit will look like on your child's body type and what sizes you should buy. So, you have an option to buying clothes, trying them on your child when you get home, and returning items that don't fit.
Need shoes that your child can put on and take off easily, but won't fall off when you don't want them to? Easy Spirit has a product that has been great for V. It is a suede shoe, like a sneaker but no fasteners or laces of any kind. It is very soft and doesn't leave blisters, even the first time it is worn and it comes in many colors.
Those are a few solutions that I have found. Please post the solutions that you have found!

The Marathon: Providing for a Special Needs Child

I call this post the marathon, as opposed to the sprint, because you have to pace yourself to make it to the end. Providing for a special needs child is a long term commitment, even if you do not provide the direct care yourself. As a child with a severe developmental disability grows up, they change physically, but do not separate from you in the way that a normal child would. They still need care in many of the ways that a younger child would.
If you provide the care yourself, it can severely limit the pursuit of your own goals and interests and you can lose your sense of yourself in the desire to meet the needs of your child perfectly. If you allow others to provide the direct care, then you may worry if your child is safe or happy and if you are providing sufficient oversight to ensure the well being of your child. The challenge is to strike the balance between involvement to the point that it overwhelms your own life, and lack of sufficient involvement to be adequately assured that your child's needs are met.
Finding and maintaining that balance has been an ongoing goal for me. As parents, we have to remember that we have many roles in our lives besides our role as a parent. We are the children of our parents, we are siblings, we are friends, we are employees, we are neighbors and we have interests and passions apart from our children. We have to allow time for all of those roles if we are to maintain our own identity and not lose our perspective. Do you make time to eat well and exercise? Do you get enough sleep? Do you have a creative or spiritual outlet in your life? You must take care of yourself physically and mentally to be the best that you can be for your child in the long run. If you don't, you run the risk of caregiver burnout.
Every now and then I have read a tragic story in the paper of a murder/suicide committed by a parent of a special needs child. These parents drowned in the attempt to meet the needs of their child without sufficient supports and they drowned in the belief that if they could not personally meet the needs of their child, that no one would. It is that fear that we carry, "If not me, then who?" There is no doubt that guilt follows the decision, on occasion, to put our own needs first.
Do you suffer the same recriminations that I do? Do you think, " I should be more patient." "I should be more attentive." " I should put more time and effort into my child's care/program."
I make mistakes and disappoint myself sometimes, then I forgive myself and move forward. I know I will never do this perfectly and I don't even know what perfect would look like.
I do know that it is important to take breaks, have fun and relax, put your worries aside on a regular basis. This is how you recharge your batteries and come back to this task refreshed and ready to give your best.
To parents of special needs children of any age I say,"Be kind to yourselves and be forgiving of yourselves. Allow others to help you, even if they won't do the job the way that you would. If your child is safe, healthy and relatively happy, then it is okay."

Respite Care or Intensive Support Services in the Home

To any parent who is beginning to receive in-home support services for a disabled child I would say this. First, think about what the person who will be providing help to your child will be doing and think about how you want it to be done.
An agency who sends staff to your home is not likely to give you any guidance about working with staff for your child. Realize that the way things were done at the last place this person worked may not be the same way that you want things done in your home. Some people want to receive lots of detailed guidance from you and some want to be left to use their own judgment. Whether or not the person is a good fit for you and your child depends on the match between how much input you want to have and how much the staff person is comfortable taking.
If you are very involved and like to micro-manage your child's care then you won't work well with someone who doesn't like too much input from a parent. If you are just getting started and don't really feel comfortable telling someone how to do their job, then you won't work well with someone who wants to be told how to do everything.
The reality is that if you don't know what you want and how you want it from support staff, you are not likely to get it. The more that you can think things through and put your expectations in writing, the more clear your expectations will be to anyone who is supporting your child.
Think also about what kind of feedback you want from support staff. If all of your communication is verbal, then you are likely to think of questions after your staff have left and may be out of reach. If you can anticipate your most likely questions, then provide a written form where staff can answer those questions before they leave.
These are things that I learned between the time I began to receive help in 1997 and now. Many of my written guidelines for support staff came about because of things that went wrong. My Daily Report form is the result of questions that I inevitably had for staff after they had already left. Written guidelines regarding transportation of my daughter were developed about 6 months after staff began driving my daughter in our family vehicle. Then I had to think about things like what I would want them to do if there was a mechanical problem and they broke down or were in an accident. After finding the tank on empty in the driveway in the winter, I had to educate staff about maintaining fuel at no less than a half tank to avoid the danger of running out fuel while driving V, and the danger of freezing condensation in the fuel line.
It is time consuming to interview and train someone to come to your home and work with your child, and clear communication and expectations from the beginning minimize the chance of misunderstanding and disappointment later that may require an inconvenient transition to someone new for you and your child.