Relationship Stress of Parents of Special Needs children

Over the past 6 years I have been providing family therapy services for various different families. A major trend which I have noticed is the lack of supportive services for Couples who are parents of special needs children. Typically these families have higher financial burdens, more difficulties with effective parenting strategies, as well as feelings of isolation.

First of all, let me say these families love their kids! These parents put every aspect of their life secondary to their children. Parents of special needs children are some of the most dedicated, steadfast, heartwarming people who walk this earth. But in the same respect, many of the report feeling extremely overwhelmed and stressed. With that stress comes marital distress, struggles with intimacy, as well as frequent arguments and irritably. You are not alone.

At times, these parents experience embarrassment by their struggle but feel the strength of their advocacy for their children. During a recent conversation while providing family therapy, a mother once said “I feel like no one else experiences this,” my response was “Believe it not, that is not true.” The isolation comes from protecting the family from the judgment of others who do not understand.

Other families can make simple plans and whimsically go out or do different activities. A trip out for a few hours is a simple as obtaining a babysitter and going out to dinner with your husband. Or “We can drop the kids off at my mothers and go away for a few days.” Conveniences are virtually impossible for many parents of children with special needs.

The most basic task like planning a food shopping trip can feel like planning the climb Mount Everest. “Let’s give my mother a call and see if she can watch Johnny for 2 hours so we can go to the store;” because it can be virtually impossible for find a babysitter for a special needs child. “We have to make sure that all of the emergency numbers out, his medicines are in clear view just in case there is an emergency, and we also need to make sure that Johnny’s favorite toys are available so that he will be occupied long enough.” “When my mother comes we need to review the redirection and de-escalation strategy with just in case he becomes agitated.” “Also we need to make sure that PECS (Picture Exchange Communication System) book is out so if he needs to ask for something he can, we should also let my mother know things he seems to have been asking for lately so she is aware.” And when Grandma comes, the parents update her on recent progress and Johnny has made and what requests he has been making in his PECS book. Then the parents quickly get in the car and head to the store and have a conversation about how one of them should have stayed behind.

Then once in the store, and waiting on line at the checkout counter their cellular phone rings. Grandma “Everything is ok but……” At this point a parents heart rate shoots up, their palms sweat, and a giant lump forms in their throat. Parent responds “What’s going on?” Grandma reported “Johnny decided to leave the house when I went to the bathroom. I found him a block away and everything is fine now but I wanted to let you just in case you heard it from one of the neighbors.” At this point the parent struggles not to leave the shopping cart in the middle of the checkout line and go home. On the car ride home “I knew one of us should have stayed home.”

This example is a generalization but a realistic scenario of how a life a parent with a special needs child and a typical child may differ. These stressors effect a parent’s quality of live, their finances, as well as their livelihood, and ability to work. All of these stressors compound and put a strain on a couple’s relationship. It is important to know that you are not alone, and we can help.

Contact the Success Source about the Burnout Prevention Groups and individualized services for Parents of Special Needs Children

Parent Stress Related to Obtaining Appropriate Education for their Children

Being a parent of a child with special needs can be stressful, and ensuring they are getting an appropriate education can be a major trigger of stress.

A parent of a special needs child gets a note in the mail indicating that their child’s therapies at school are changing, and the school has adjusted the schedule to meet the child’s needs. The note continues to read that the child’s progress has indicated “his progress has been significant and the same level of service may no longer be necessary.” The first thing that goes through the parent’s mind is “Wait that is not what we agreed upon in the IEP, how are the therapies changing, how is the school making that determination and decision without me?” At this point the parent’s anxiety level is rising, as she thinks “Now what do I need to do, do I need to contact my advocate again, do I need an attorney this time, or maybe they are right.” At times ensuring your child’s educational needs are met can be chaotic and anxiety provoking.

To better understand the origin of how some of these feelings are developed; let’s take a closer look at two different but common ways children with special needs obtain special education services.  In these examples, we will pay attention to the stress related to different parts of the process.

Stress related to the education system is one of the biggest stressors for parents of children with special needs concerns such as “Will he learn to read like the other children,” and “My daughter needs assistance with staying on task, she simply can’t sit still.” In some cases, special needs children obtain assistance from the very beginning. For parents of these children, the watch worried as their child either struggles with milestones or shows progress and inexplicably regresses back and loses abilities they once had. For the other children whose disability is not as obvious, parents experience an extensive amount of frustration. Common statements such as “If he simply followed directions he would be fine,” “Ms. Smith, you need to be more consistent with punishments because he is out of control,” and “Mrs. Johnson you should put him on medication because he behavior is too disruptive.” Many parents have to fight to obtain accommodations and when they do feel they have arrived at a solution to their child’s needs they are terrified their services will be decreased or disappear.

Whether you are unsure your child is receiving the appropriate accommodations, need assistance with advocating, and or would benefit from having an experiences educator/advocate/clinician in your corner. I can help; I work closely with parents to help them understand advocating strategies, how to interpret assessments, as well as how to gather the needed information to support their requests for services. Together we can improve your child’s chances of getting what they need!

For many parents when they are assured that their child is getting the appropriate services it puts their mind at ease and they feel significantly less stress and relief. Contact us and we can meet for a consultation.

Preventing Stress: Helping Families with Special Needs Children

“Every morning I wake up and try my best to get him ready for school but every moment is a struggle. I do my best to promote his independence; I wait patiently for him to get dressed and redirect him when he gets off task, and I try my best to comfort him when he seems anxious.

In general, he moves really slowly and even though I have shown him many times in the past, I have to keep re-teaching him the same routine. Often, I feel overwhelmed because I worry if he will be able to complete normal everyday tasks without my help.

I try to empower him to do his morning routine and little by little I help him, and at times, I feel so sad because I realize that other 11 year old boys do not need the same reminders. Other boys his age do not need help eating breakfast. And then after the struggles of the morning routine, I finally get him to school.

Once at school, I get the reminder from the secretary in attendance, ‘It’s really important that he come on time.’ It’s so overwhelming because no one seems to know what I am going through, I am saddened by the isolation and fear the tantrums of the morning to come.”

“What am I to do?”

This is just a short story of a typical morning of a parent of a child with special needs; more specifically an 11 year old boy with a Pervasive Developmental Delay (PDD). Many parents will never experience nor understand the daily demands, and emotional stress and enamoring joy of being a parent of a special needs child. Many parents report that they feel very sad because their child struggles doing the things other kids have no problem doing.  With the stress accompanies the wonderful gift of watching their success.

When anxiety and sadness are overwhelming, parents of special needs children suffer and so do their children. Examples such as increased irritability, which effects the special needs child, the other children in the house, and spousal interactions. In addition, many special needs parents ignore their own needs and will always put their own needs aside.

This can be dangerous because, when parents ignore their own needs they typically ignore their own health. Parent health is especially important when a family has a special needs child because they may need a significant amount of assistance over the course of their parent’s lifespan.

You are not alone; many people struggle with these difficulties on a daily basis. Troy and the Success Source have specialized training to provide individual counseling and hold groups to assist parents with special needs children. We can help you with finding a balance to increase the quality of yours and your child’s life.