I’ll never forget the night my wife and I found out we were pregnant. The excitement, joy, and thankfulness we experienced were overwhelming. We couldn’t wait to call family and friends to deliver the good news. We were excited to go through all the firsts new parents go through – baby showers, baby proofing, nursery work, doctor appointments, etc.
“When you choose to become a parent, you choose to live a life of vulnerability.” – Unknown Source
It wasn’t until our first ultrasound that the reality of the above quote hit home. Every time the sonographer searched for our baby’s heartbeat, mine seem to skip a beat. It usually only took a few seconds, but it felt much longer for me. “Please, please let them find the heartbeat” seem to be the only thought running through my mind. Then, we’d hear it and it was like music to our ears.
I think the doctor appointments are the scariest part about the pregnancy. For nine-months we are hoping and praying that our babies will be healthy. We rely on our doctors to give us good news after each visit. But sometimes that news doesn’t come. On occasion, parents are presented with the news that can be summed up in these two words, “Something’s wrong.”
My wife and I faced this fear with our first born. A few months into the pregnancy, the ultrasound was showing his head measuring one week ahead of his torso. Our doctor feared it could be hydrocephalus; thus, we were sent to see a specialist for high-risk pregnancies. We had another ultrasound administered with the specialist and they were showing that his head and torso was fine, but his limbs were measuring smaller than expected, which indicated something else could be wrong. At this point, my wife and I had a difficult heart-to-heart discussion about the possibility we could be having a child with special needs.
We discussed that no matter what physical or mental condition, in which our son arrived to us, we would love him unconditionally and do whatever we needed to do in order to appropriately and adequately care for him. I held on to two specific memories. One was of a presenter who spoke of his special needs son. I held tight to the joy the emanated from him as he spoke of the purpose and happiness his son brought to his life. I also focused my thoughts on a young man I remembered from church camp – Geoff Parker. Geoff was probably in his mid-twenties when I was at camp as a graduated senior, but his mind was that of a small child. I remember how Geoff was so loved by EVERYONE at camp. I remember that he, himself, truly loved everyone whom he came into contact with. In fact, he would refer to himself as the “Peterbilt Mack Truck of Love.” As I write this, my heart is smiling as I recall his innocence and pure heart. I tell you all this to say that I did my best to cope with reality that my dreams of family and parenthood may drastically be changed upon the arrival of a special needs child.
Parenting a child with special needs is a hard reality for many parents, at least in the beginning. Sometimes parents discover during the pregnancy or birth that their child has mental and/or physical struggles (e.g., down syndrome); and other parents make this discovery later on as the child develops (e.g., autism). Despite when the discovery happens, one can never adequately prepare for the emotional, spiritual, and in many cases, financial toll that soon follows. These parents are usually faced with intense feelings of fear, helplessness, sadness, anger, and confusion. After all, I think I can safely assume that when we are young and envisioning our families, we usually don’t see ourselves as parents of special needs children. Therefore, when this reality hits, the family “dream” has forever been changed; it is no longer achievable in its current form. Therefore, these parents usually grieve the loss of a dream. In addition to their grief, these parents also have to figure out what they need to do to adequately care for this child. Their plates all of a sudden become extremely full and their lives become overwhelmingly hectic.
I don’t want to negate the fact that experiencing joy, happiness, and fulfillment of life is a true reality for many parents of special needs children. However, many parents simply are not at that place yet. Therefore, I would like to provide some suggestions that may be helpful in this difficult, but potentially, life-fulfilling journey:
1. Find a good support system. “It takes a village” is an expression we often hear in the parenting world. This adage is especially true when raising a special needs child. Willing and supportive family and friends can prove to be invaluable.
2. Get to know other parents of special needs children. It is often comforting to know that you are not alone. Organized support groups can be a good place to meet parents who are going through similar experiences as you.
3. Take good care of yourself. Caring for special needs children can be highly stressful and overwhelming for lengthy periods of time. Therefore, it is imperative that you are taking time to refuel. Taking care of yourself should be a priority. Putting yourself first for the sake of others is a very selfless act. In other words, your families, your friends, your children, and your churches deserve to have you at your best. The best way to do that is for you to take regular retreats – to be still (e.g., exercise, prayer, meditation, etc.).
4. Take good care of your marriage. Parenting special needs children can be very challenging to the couple relationship. Make sure you are keeping the lines of communication open with one another. Talk about your fears, your anger, your confusion, etc., on a regular basis. Also, quality time is a vital component to a healthy relationship. Thus, make sure you are scheduling regular times for you and your spouse to spend together.
5. Find a good therapist. Becoming a parent of a special needs child is not something we prepare for; therefore, therapy can prove to be highly beneficial in helping parents fine tune their parenting skills, helping them work through their grief and other emotions, and helping them effectively adjust to this new way of living.
These are just a few suggestions that I hope you will take into consideration as you, your spouse, and your family go on this challenging journey. I have rambled on enough. Now, I am truly interested in what you have to say. If you are a parent of a special needs child, please share your thoughts and suggestions based on your experiences. If you are a professional who works with special needs children and/or their families, please share you expertise and resources. May God bless you all for your big hearts and commitment to provide these children as comfortable and meaningful life. You are all heroes in my book.
Comments
ABLE Ministry
Josh, thanks for sharing your thoughts on raising special needs children! As you mention, networking with other parents for sharing and support can be an important piece of self care. Quail Springs Church of Christ has a great ministry called ABLE. Here is a link: http://www.quailchurch.com/Ministry-ABLE The ABLE ministry provides a variety of services to children with disabilities and their families including support groups and Exceptionals sports leagues. I hear about and have witnessed great things from this ministry!
- Tara Fritsch, Licensed Marital & Family Therapist.
SoonerStart
Josh, you did a great job in covering all the aspects of parenting a child with special needs. Sooner Sucess puts out a resource guide for families http://oasis.ouhsc.edu/documents/ResourceGuideJune2011.pdf. If a child is under three, a family can self refer to Soonerstart 405-271-9477. They will evaluate the child, and with the family, determine the treatment plan. SoonerStart will also help with a transition plan for when they turn three. Thanks again for a great article.
Parent Support Groups
I love the suggestions you give to help parents adjust to the needs of their special needs child. One of the best resources I've come across is the Oklahoma Autism Network. I had the pleasure of meeting the couple who started this group once. They were very kindhearted and passionate about helping other parents. Among other things, the website lists parent support groups for parents of children with Autism. These groups meet across the state on a regular basis and offer childcare. What a fantastic resource- getting to meet other parents, building relationships, sharing experiences, gaining knowledge, and taking care of yourself as a parent. You can find the list of groups here: http://www.okautism.org/about/parent_led.asp
Melissa Oliver, MS, LMFT-Candidate
Online Resources
Josh has presented some wonderful coping strategies for many of the challenges parents of children with special needs face. Finding the resources Josh suggests to develop and maintain a strong support network can be hard work, but here are some online resources I would suggest visiting: http://oasis.ouhsc.edu/, the website for Sooner Success, the statewide information and referral for Oklahomans with special needs, http://www.okdhs.org/programsandservices/health/cshcn/, the Oklahoma Department of Human Services website for health services for children with special needs and http://www.metrofamilymagazine.com/Special-Needs/, the Metro Family Magazine featuring the special needs edition. Each of these websites provide valuable resource and referral information for both parents and professionals.
- Ginger Myers, Licensed Marital & Family Therapists
Parenting
My firstborn son has autism. I watched Ethan's rapid development and progress halt, and felt the intense fear as he slid farther behind and lost skills. Nobody plans to have a special needs child, and it can be especially difficult to deal with when the discovery is made long after birth, when you've let your guard down to that possibility. After the shock wears off, you just figure out what your new "normal," is. Research and advocacy for your child is very necessary, but also loving on them and treating them (as much as possible) as a "typical" kid. Don't let yourself become so immersed in the clinical side of things that you neglect the fun.
Thanks for sharing
Thanks for sharing, Rachel. Remember to have fun is an important skill we tend to neglect when going through trials. Thanks for that reminder. What resources have been the most helpful for you, if you don't mind sharing?
Whole Picture
There have been a lot of great comments already posted. There was a great assessment I saw on http://www.okautism.org/default.asp a few years ago. The assessment had individuals examine their natural resources: family, friends, neighbors, church, etc., and the roles each of those natural resources play in their lives. The great thing about assessing for natural resources is it does not have to limited to autism or other individuals with ID/D. Aside from assessing natural resources parents and families can assess for participation in natural activities that would be appropriate as defined by each family: going to the park, walk, fishing, etc.
Educate yourself, educate your natural supports, educate your formal supports (schools, doctors, therapist)...Not all therapists or doctors are familiar with or have experience in dealing with the needs of a child with an ID/D. The more you educate the other people in your life, the more they can understand what you are dealing with. Empathy is a great tool, but empathy cannot be utilized unless you let others know how you are doing. The more you educate yourself and others, the easier it will be to ask for help.
Josh, hit the nail on the head with #3 and 4. Find WAYS to take care of yourself. Make sure individual and marital respite time (gym, hot bath, date night, etc) is a fundamental part of your schedule. A parents stress is more predictive of maladaptive behavior in a child...any child, than a child's negative behavior predicting stress. Depending on the diagnosis a stressful environment is a recipe for all parties involved getting really stressed. Autism would be an example of a diagnosis, where modifying the environment can play a big role in the level of stress. Stress is also not good for the marital relationship, so minimizing stress can potentially have an ameliorating effect in two domains: parenting and marriage.
My little brother was diagnosed with ASD in 1991 and I have had a lifetime of informal experience in addition to my academic experience. What I have learned from my experiences growing up is to learn how to be part of his world. For parents, this means learn how to be part of your child's world, whether or not they are developing typically or have been diagnosed with some form of an ID/D. By being part of their world you can better understand their unique desires, wants, and needs.
For example, my brother gets really frustrated with change. In his world if he thinks he wants something, like a soda and asks for one, the answer better be yes. If the answer he receives is, "No." he potentially could through a temper-tantrum. Today, at 28 years old, a temper tantrum from him is scary. But, giving in every time to avoid a temper tantrum is not the answer. I learned how to adapt. I found out that ultimately what he wanted to hear was, "Yes, you may have a drink". When he would come over to visit and ask if he could have a soda I began to reply, "You may have milk." With this type of answer stress was kept at a minimum, and we had a win-win outcome. The main idea here is to identify the desired outcome and develop answers that will help both parties involved.
If there is one thing I can emphasize, that would be: ASK FOR HELP WHEN YOU NEED HELP. Ask your natural supports when you need help. Ask your formal supports when you need help. Turn to your spouse, let them know what is going on.
Remember:
EDUCATE
EDUCATE
EDUCATE
&
ASK FOR HELP WHEN YOU NEED HELP
ASK FOR HELP WHEN YOU NEED HELP
ASK FOR HELP WHEN YOU NEED HELP.
I am thankful that you wrote
I am thankful that you wrote this, Josh. Any kind of chronic condition can be debilitating to a family. Mikayla's needs seem to overshadow our needs on so many levels,that it is hard to even think of what we might need/think/feel. I echo the need for therapy - therapy isn't for "crazy people". It's for people who need help sorting and prioritizing the things in our lives. Therapy is for healing. Our lives have been so hectic that when left to choose whether to clean the plates (and the food on them!) off the table after supper or go to bed to TRY to sleep, then sleep has had to win. We've had to sleep on separate beds, in separate rooms, in order for the others in the house to possibly get some decent sleep. We've scolded Hannah for making Mikayla laugh, because she had just had a tube feeding. Mikayla threw up the tube feeding, so we then had a mess - and the need to comfort Hannah because our situation wasn't normal, whatever that is. For others to REALLY be able to help families of children with special needs, they need to approach whatever situation they see with compassion and a true state of helpfulness. The messes in the house can be indicative of the much bigger messes that are present within the family.
Social networking is the key!
Just like no two children on the autism spectrum are alike a similar phenomenon can be seen in the needs, supports, and level of resiliency across families dealing with disability. Common trends such as the tendency to isolate and overextend oneself often emerge. Let us not forget to add the overwhelming feelings of guilt, guaranteed loss of sleep, and difficulty coping with a variety of issues. Although each parent, child, sibling, or extended family member is unique in his/her own individual circumstance, the need for support, awareness, and understanding is present in every situation. As a parent I have witnessed many find hope and more importantly the will to continue by simply sharing experiences with others. As a professional, I have been able to provide empirically driven information on treatments, interventions, and the importance of support. However, no matter how many lectures or speaking engagements I participate in, the most valuable tool I have found to date is social networking. Connecting people so they may obtain the necessary support whether medical, educational, social and/or emotional is critical. In my opinion, there is no better way to increase awareness, knowledge, understanding, and assistance to families and communities about issues surrounding special needs and disability.
A number of resources are available so there is no need to reinvent the wheel. The key is linking families to appropriate resources. Some resources have already been mentioned above so I will not re-list them. Recently the Oklahoma Department of Rehabilitation Services released a resource guide which I have found to be extremely comprehensive http://www.okrehab.org/guide/toc.html. Below are a few additional advocacy items which I believe are critical for empowerment and collaboration toward promoting positive social change.
Partners in Policymaking- http://www.okddc.ok.gov/partners_in_policymaking.html
Parent Support Groups- https://www.autismoklahoma.org
IEP assistance and education- http://www.wrightslaw.com/
Behavior support and ideas- http://behaviordoctor.org/
Adaptive leisure and mobility bikes- http://www.ambucs.com/
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