Valley Health Magazine

By Kathy Eide Casas & Krista Dossetti

According to the U.S. Department of Education, there are approximately six million children in America today who are receiving “special education.” One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness, such as Down Syndrome, autism, or cerebral palsy.

But, this article is not a statistical survey of special education or the complicated way it is funded. This article does not debate the effectiveness of the system, or engage in a debate about whether Asperger’s Sydrome or autism should be included in the methodology of defining and treating special needs.

This article is a practical guide on how to deal with the common challenges moms of children with special needs face. Additionally, some real Central Valley powerhouse moms who live the aforementioned statistics share their advice on how they keep their homes running, their successful careers on track, and how their children and passion inspire them each and every day. While the debate will continue whether to stay-at-home, work-at-home, or work outside-the-home, moms everywhere continue to strive for that perfect balance, all while being simultaneously pulled in countless directions. Yet, no matter whether our children are typical or atypical, or what side of the debate we’re on, we are all connected by the powerful tapestry called motherhood.

Bringing Baby Home : The First Few Months

After months of waiting, hoping, dreaming and planning, your child is born. Maybe you took advantage of prenatal testing and were aware of potential abnormalities such as Down Sydrome or other birth defects, and thus had started research or prepared for your labor by having the appropriate specialist on hand. Or, the first few moments of your child’s life might have been spent in confusion and fear, as you first realized all was not as you expected. Regardless of what the diagnosis was, or how you felt, chances are your primary concern was the safety and stability of your new, tiny bundle.

• What to do first: Hold your baby as much as possible. Most hospitals allow parents access 24-hours a day. While the presence of tubes and machines may be frightening, your baby needs your touch, voice, and love. If you are not able to immediately breastfeed and want to, take advantage of a lactation consultant or nursing staff in starting to pump and save your milk for future use. Breast milk will keep in the freezer for up to three months. And, don’t be afraid to ask questions, over and over again, no matter how many times it takes, for clarification on any terms you don’t understand. But, be patient, as a diagnosis may not be 100 percent certain. You can practice any necessary procedures such as administering CPR or giving medicine to your infant with the nursing staff. Based on your child’s condition, you may also be assigned a social worker to help you prepare for bringing baby home.

• Find the right pediatrician: You may have already signed on with a pediatrician prior to giving birth, or were planning on a particular one based on the recommendations of friends, family, or older siblings. However, your child’s needs may demand a specialist with a particular background of expertise. Choose the right practitioner carefully and do your research. Ask hospital staff and your obstetrician, and keep in mind that some hospitals have rules against directly endorsing particular physicians. Use the providers listed by your PPO or HMO network as a starting point for your search, and if possible, take advantage of the amazing resources and staff at your local hospital.

• Prepare your home: You thought the nursery was all ready to go, but now the size and/or physical condition of your upon the help of friends and family is a must here. Armed with the advice of hospital staff and/or a social worker, task wellmeaning family members to gather items and stock your home (and refrigerator) with the supplies you’ll need to last the first few days and/or weeks. The hospital staff will be instrumental in determining what you need, and most facilities offer a short-term supply of necessities for new parents to take home. This might include diapers; special feeding aids; premature infant clothing (carried at many typical baby supply stores); an additional plush insert to hold baby securely in place for the car ride home; and sometimes even ready-made, nutritious meals for you and your family.

• Don’t forget to care for yourself: Chances are the hospital will provide you with all the information you need for the immediate care of your baby. Yet, chances are even greater that much of this information will be overwhelming and difficult to remember as you deal with your own new reality, and the worries and fears that are inevitable to some degree, and completely normal. While all of your energy is consumed by caring for your child, it will be near impossible to take time for yourself, but try anyway. Taking advantage of support groups and meeting other families who have or are going through the same experience will provide you with coping skills in the present, and inspiration for the future.

Latent Disorders : Not all conditions are obvious at birth. It may be that your child’s condition did not become noticeable until the delay of typical developmental milestones such as speech or motor skills, or even until your child entered grade school and was unable to maintain the same pace and focus as other students.

• Diagnosis: This will largely depend upon the age of your child. You may notice delays in typical development within the first few months of infancy, or perhaps your child is not progressing according to you or your physician’s expectations in terms of speech and motor skills. Or, it may not be until your child starts school that learning and/or cognitive disabilities become apparent. It will certainly be difficult, and there may be a good deal of defense in first hearing about any shortcomings in your child’s performance. However, remember that it is about getting them the attention and care they need to thrive, not maintaining your pride. Carefully consider the observations of experienced educators and others in your child’s inner circle, including daycare providers or family members who spend a significant amount of time with him/her. Think critically and honestly about the difference between your child and other same-age children you know. Talk to your pediatrician, get a second opinion, and seek out specialists. It may be extremely challenging. Many parents spend a significant amount of time and money in not only establishing a diagnosis, but then also seeking the right type of care for their child.

• Child Care: This is another crucial piece of the puzzle. What type of child care you choose will be dictated by what you can afford, what is available in your area, whether you work outside the home, and if you plan to shoulder the primary portion of childcare yourself. No matter what you decide, going it alone is not recommended. Even if you assume total ownership of your child’s condition and education, you will need help, resources and support from other parents and families, and at the very least, some education yourself about how to best meet your child’s needs. Additionally, although your instinct will be to protect your child at every turn and be alert to every risk, you no doubt also want them to have as “normal” a childhood as possible with friends, birthday parties, and as much independence as they can safely handle. Discovering resources that allow your child to grow beyond your constant, loving watch will be the healthiest choice for both of you in the long run.

• Siblings: While your children may forge a bond unlike anything recorded between siblings before, the special needs of one child may demand more time and attention from parents, and feelings of jealousy are to be expected. Similarly, a child with special needs may experience increased frustration when the abilities of younger children surpass their own. Talk it out, to the best of each participant’s level of understanding. When dealing with feelings of jealousy on behalf of another sibling, schedule special time with that child. Although one-on-one time with each parent may suffice, it may also be worthwhile to schedule a mommy and daddy day as a unit. Also, make your older or younger sibling a part of your family’s daily care routine. If it’s not possible for said sibling to assist with dressing, teeth-brushing, shoe-tying, and so forth, having him or her help mom or dad with lunch-making, pet care, or other age-appropriate activities will enhance his/her sense of value within your home. Likewise, reinforce the great strides and accomplishments of your child with special needs when frustration and feelings of anger arise. Build a “confidence board,” filled with images, artwork, awards, and future goals that make him/ her feel good. Use the board to remember special moments and set new goals. Encourage siblings to add a joint goal to the board such as raising pledges and walking together in a charity event.

You:

• Therapy: while setting aside your own needs for those of your child has probably become second nature, taking care of both of you won’t last long if you don’t take time for yourself. Yes, you can go to the spa for a day, schedule a mom’s night out, or indulge in an afternoon of your favorite hobby (all of which are very important). Yet, some moms struggle with guilt, depression, and deep heartbreak over the disability of a child. “Me” time may also need to include time spent with a professional to discuss any inner struggles. This may eventually include your spouse or significant other, and evolve into family therapy, but at first, you can use these sessions to practice taking time for yourself. A professional experienced in working with families with special needs can help you discover self-forgiveness, and celebrate all that makes your family so special.

• Meaningful activities: Sheer mindless pleasure is something we all deserve every once in a while, whether in the form of an hour spent with a tabloid magazine, a candlelit bubble bath, or a luxurious pedicure. However, just as it’s important to seek out the support and experience of others, you may be surprised at how cathartic it is to share your own story and serve as a mentor to someone else. Finding a place to volunteer, writing your family’s testimonial, or starting a blog can offer a way to work through your own trials and tribulations while sharing invaluable experience with others. You will be surprised at how much giving to others benefits your own sense of wellbeing and peace of mind. You will also be surprised at the number of other moms that may be sharing your feelings, and there’s never a shortage of great ideas when communicating with other moms.

• Rejuvenate Romance: There is no shortage of couples torn apart by the stress and emotional and financial burden of caring for a child with special needs. The special needs of one child may demand more time and attention from parents, and feelings of jealousy are to be expected. Seeking professional help together to cope with the changes taking place in your life—before problems arise—or joining a support group that is similarly focused may be helpful. Although planning a date night is a great goal, it may not be feasible given your financial situation or availability of childcare. But, remember, romance is a feeling as much as a place or a setting. Try this: spend 10 minutes remembering an intimate encounter between you and your partner at the beginning of your relationship. Chances are the memory has little to do with an expensive meal, lavish hotel room, or even a bouquet of flowers. While keeping sex on the menu is important, maintaining intimacy through talking, perhaps by scheduling 30 minutes together a few times a week with no cell phones, TV, or other distractions, will help strengthen your connection as a couple, and sustain you through the next bout of finger-pointing during a 2 a.m. trip to the E.R.

• Going back to work: Back to that whole guilt thing. Whether you go to work because you secretly love it, or because you have to and spend the day staring at the clock with tears in your eyes, it’s OK. Truly. Either way, your decision was motivated by what is best for your family. However, there’s no sense pretending your life hasn’t changed or assuming more responsibility than you can realistically handle. Talk with your employer, and be honest with him/her and your colleagues about your new reality. There will come a day, most likely many days, when the phone rings and your baby needs you, and only you, whether she’s three months or 13. Speak candidly about what you want and propose any new terms you feel would help maintain your position and value with the company. Don’t be afraid to be creative: is there a way to work mornings or afternoons from home? Can you financially afford to reduce your schedule to parttime? Is there another position available with more flexibility? If you don’t ask, you’ll never know.

About the Authors: Kathy Eide Casas is a lifelong resident of the Central Valley. She has served in various political, policy and media capacities with elected officials, most recently as District Director for Congressman Jim Costa. Currently a public relations and public affairs consultant, Eide just completed the writing of the inaugural edition of Focus Forward’s magazine, Stories of Hope.

Krista Dossetti has over 10 years writing and editing experience in the Central Valley, including serving as Editor for Valley Health Magazine since October of 2008. She currently lives in San Francisco and is expecting the arrival of her first child at the end of July.