As the mother of a child with special needs, I have come to realize how easily we as parents are undermined by well-meaning friends and family members. Most mothers agree that unsolicited parenting advice is annoying enough, but when you have a child with unique needs, that unsolicited advice can be downright maddening and completely counterproductive to all the hard work we've done to help shape our children. However, we realize that people are just trying to help since it's obvious how much we struggle at times.
I want to start off by saying that this post is not meant as a criticism of anybody. I merely want to educate people who love kids with special needs about the "atypical" parenting that they might witness and the reasoning behind it.
- "Stupid" Rules: I know that people in my life feel that the rules in our family are a bit strict and even "stupid." Most likely, this opinion is a direct result of our conservative values particularly about language, modesty, media, and safety. I understand that we can be a bit more conservative and tight-laced than other families, but there is absolutely no need for anyone to mutter "that is so stupid" under their breath while we are in the process of disciplining our children (yes, we hear you, thankyouverymuch). Talk about undermining!
- An example: The rule in our house is that nobody is to leave the bathroom without being dressed. Yes, it is to instill the virtue of modesty in our house (especially since it's a house full of boys who are home with their mother all day), but the rule also serves to prepare my oldest son for public school. We cannot have him walking around the school bathroom with his pants around his ankles! Regardless of what you think, the rule stands and our sons are expected to follow it.
- Putting In Your Two Cents While a Child is Being Disciplined: Yes, the way in which we discipline our children can seem a bit odd at times, but be assured that most of these techniques are the result of intense research, parenting classes, and guidance from our children's therapists/pediatricians/neurologists/special education teachers/etc. Much of what we say and do while disciplining our children is scripted, so please do not interrupt the disciplinary process -- interrupting the script defeats the purpose of having one in the first place! Also, if a parent is in the midst of dealing with a royal meltdown and tantrum, please leave the parent and child alone! We understand that you're concerned and seeing that type of violent behavior can be unnerving, but approaching a parent who is trying to stay focused on getting the situation under control to ask "what happened?" or "is everything ok?" really does not help. An exception to this is when the behavior is physically violent and someone is getting hurt or when the child's siblings are nearby and need to be looked after while mom or dad is busy defusing the situation.
- An example: While my husband was disciplining my son using the problem-solving dialogue technique we learned at CUIDAR, a family member walked up and began trying to "help" and give an opinion about the situation. We understand that you truly want to help out, but when you butt into the dialogue, it becomes worthless and the disciplinary process is prolonged.
- Another example: In addition to using a problem-solving dialogue, we were instructed to use "When...then..." statements to help shape behavior. Unfortunately, my son's homeschool "teacher" with whom we meet monthly sees this as "negotiating" with him and feels that they way we parent him contributes to his oppositional behavior during their monthly meetings. To me, the statement "When you finish reading to your teacher, then you can draw with markers" is not negotiating -- it is earning a privilege for acting appropriately and doing what is expected of you.
- Changing the Circumstances Because It's You: We all know that close relatives, friends, and godparents love to "spoil" our kids, but when parents have ground rules or have instated a consequence, we expect you to respect them. If we have a "no throwing things in the house" rule, don't tell the kids "Oh, it's OK to throw things at my house." If a parent puts a child in time out, don't approach the child and start a conversation. What our kids need is consistency across the board and by changing the rules or circumstances, the children only get confused as to what appropriate behavior looks like.
- An example: As a result of his disrespectful and reckless behavior, we told our son that he was not to have any juice until he apologized for calling a parent "stupid" and behaved appropriately during the remainder of our outing. So being the clever manipulator he is, he convinced someone else to give him some juice. When this person was told that my son was not to have any juice because he had lost the privilege, the retort was "Well, he'll get dehydrated!" Trust me -- he will not get dehydrated after 20 minutes in 67-degree weather. And now, the meaning of the consequence that had been set forth has been lost.
- Disrespecting a Child's Sensory Needs: I know that this one is probably the most difficult to understand for most people. Sensory Processing Disorder is not yet as accepted in the medical field as it should be, so a lot of people are simply unaware of what it is. However, it is easy to learn what a child's sensory needs are, even if you don't understand why. If a child is overstimulated, leave him or her alone. If a child refuses to eat a certain texture of food, don't force it on her (chances are their OT or SLP is working on that!). If a child turns his shirt or socks inside out because the tags and seams drive him crazy, let him be. When in doubt, ask the parent.
- An example: My son is working on self-regulation with his Occupational Therapist. Over the past year or so, he has been learning to recognize when he needs quiet time to calm himself and he will retreat to a quiet room, to a tent, or some type of confined space until he feels ready to rejoin everyone. When he does this, please do not walk up to him and start a conversation or play peek-a-boo with him. It only serves to rile him up further.
- Giving Edible "Treats": A lot of kids with special needs are on special diets, whether the reason be an inability to digest certain foods, allergies, or diets that help influence behavior. We all know that relatives (especially grandparents) love giving kids treats like candy and baked goods. However, if they know that a child is on a special diet, they need to respect that. Changing a child's diet can be detrimental to their health and behavior and in some cases can be downright dangerous!
- An example: Our oldest son has ADHD and ODD, along with a chronic medical condition. He's on a high calorie diet without artificial colors or preservatives. Because of this diet, our entire family tries to avoid the artificial colors and preservatives. So during a recent holiday, a family member came bearing sweet treats for the kids. We allowed one treat for each boy, but told the family member that they could only have one. Needless to say, I was unpleasantly surprised when I saw the kids walking around eating completely different sugary, junky treats just a few minutes later! When this person was reminded that the kids were to have no more chocolate-covered licorice and marshmallows, she immediately became defensive and said "I'm a relation and I want to spoil them." Well, too bad. My husband and I put the treats out of sight and out of reach and had to deal with the consequences as the two older boys bounced off the walls until 11:00 that evening.
These are just a few examples that I hope will educate people on why we do what we do as parents and how to best help us out. Sometimes doing nothing is the biggest help of all! We also appreciate it when people ask us questions about how and why we do the things we do so that everyone understands and can be on the same page. Again, I hope that nobody interprets this post as a personal criticism. I really want friends and family members of children with special needs to understand how our lives are different and to help become encouraging members of the child's support system.
If anyone else has an example or word of advice, please share in the comments. I'd love to hear from you!
Maria Lin has written an excellent article titled "7 Things You Don't Know About A Special Needs Parent." This article touched me immensely and I wanted to add a few things to her list.
- I am tired.
- I am jealous.
- I feel alone.
- I am scared.
- I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... "
- I am human.
- I want to talk about my son/It's hard to talk about my son.
- I am sad. I am not sad for myself. I am sad for my son, whose playdate invitations have evaporated down to nearly nothing over the past 2 years. I am sad for my son, who when doing schoolwork and struggling with his writing throws his pencil and workbook to the floor and cries "The people who wrote this book hate me and think I'm stupid!" I am sad for my son when his tics escalate and he complains "I just have to do it."
- I am embarrassed. I am not embarrassed of my child! I am embarrassed when he throws wicked tantrums in public and people stare, make comments under their breath, and take down my license number in the parking lot. I am embarrassed when people think I'm a bad parent when I am trying my best. I have taken parenting classes. I have read books. I have sought advice from friends who are pediatricians, occupational therapists, and marriage family therapists. However, in the court of public opinion, I am a failure because my child is not as quiet, calm, and well-behaved as they think he should be. I know I shouldn't apologize, but I'm sorry.
- I am a great actress. My friends tell me that I am remarkably patient with my son. I wish that I could be as patient as they think I am. They don't hear the yelling, they don't see my tears, they don't see how much my blood pressure has gone up in recent years. Towards the end of the day, my patience is often worn thin or completely away. There is only so much arguing, contradicting, defying, hitting, spitting, running away, screaming, and harassing a mother can take. Fortunately, most days are good days!
Though a lot of these statements sound negative, I would not trade this life for anything. My son has taught me unconditional love and self-sacrifice. He continually teaches me patience. He makes me appreciate the good days and the kind strangers whom we have encountered. I share in his joys, his triumphs, his tears. I have watched him grow and learn. I love my son and that's all that matters.
I know that my blog has been rather quiet since the new year began and I want to share why. In early January, we finally received a "Permission to Assess" form from the school district after 10 months of fighting to have my son assessed by a school psychologist. It has been such a long journey this last 5 1/2 years and we feel like a major weight has been lifted off our shoulders!
Before I had children, I thought I knew what parents of those kids with whom I worked were going through. I had a younger brother and several younger cousins. I babysat. Heck, I even have a cousin with Down syndrome, so of course my personal life experience and limited work experience would be enough, right? I knew that kids had to nap. I knew that young children do not always cooperate. I knew that nonverbal kids got frustrated. I knew that parents love their kids so much that they will sacrifice their own health and sanity to get the best for their children.
HOWEVER, after having a child with special needs of my own, I realize exactly how much of a physical and emotional toll it takes to raise him. I now understood why parents came to IEP meetings either in fear, or ready for a fight. I now know why their schedules were so tight that I had difficulty scheduling my own assessments for the school district -- doctor visits, PT, OT, Speech Therapy, ABA, recreation, and that very carefully choreographed nap. I know what it feels like to live in fear for my child's life.
Now, I know you're thinking that the 3 little boys in the photo above look perfectly happy and healthy, and they are. My oldest son is nearly 2 years older than my middle son and they are virtually the same size. My oldest son (HIPAA be darned!) has battled Failure to Thrive since he was 5 days old. We supplemented with formula at 1 week, started solids at 5 months, and fed him a high-fat and high-calorie diet when he just would not gain weight. Then the vomiting began. Massive amounts of vomit that contained every single thing he had consumed that day. Tremendous amounts of vomit coming from a little boy who was not sick. Daily vomiting for 2-3 straight weeks that finally got the attention of our Pediatrics group after we continued to bring him in for the same thing 3 times. Was it as simple as his being constipated, or was it as tragic as a brain tumor?
We immediately nixed the idea of a CT scan on an 17-month-old. We took him in for abdominal x-rays to rule out fecal impaction and the poor boy could not have his mommy with him because she was 5 months pregnant. Daddy tried his best, but I could hear my son screaming from the waiting room. And, no, he was not constipated.
Then we had to rule out Diabetes. Have you ever tried to collect urine from a toddler? After a week of trying to apply a half condom/half plastic baggie to his male parts, we finally collected enough of a dribble to be tested. Not Diabetes.
Next, to rule out an obstruction. If you thought the x-ray experience was terrible, taking that kid for an Upper GI Series was an absolute nightmare. The techs nicknamed him The Incredible Hulk because they could not keep him still, even on a papoose board. He refused to drink the barium. He screamed. My, he screamed! And then they decided that the test wasn't going to happen, so it was a bunch of suffering for nothing.
All this time, I was doing my homework and was convinced that my son was having problems with malabsorption. We finally got an appointment to see a Gastroenterologist and she agreed that malabsorption may be a possibility. While I was giving blood at the local lab for my pregnancy workup, my poor little 18-pound 19-month-old gave 5 vials of blood himself. I wanted to cry right along with him. We collected 14 stool samples to rule out H. pylori, Celiac Disease, etcetera, etcetera. I have never been that intimate with anybody's poop in my life, but I collected that poop like my life depended on it, because my son's life depended on it. And I will forever be thankful for those 14 stool samples because they finally gave us an answer. MY SON HAD MALABSORPTION.
But why?
The vast majority of children with Malabsorption also have Cystic Fibrosis. The next largest group of children have Schwachman-Diamond Syndrome. So it was off for more testing. It took 3 screaming, crying tries to get a successful sweat test for CF, only to find that he was negative (which we figured, since we are not carriers). Then we were off to the geneticist. And more blood draws. And more tears from the both of us. Negative for SDS. Negative for dwarfism. Negative for Noonan Syndrome.
The verdict: Pancreatic Insufficiency. We could stop blaming ourselves. We were feeding him enough and he was eating plenty. His body just wasn't absorbing it.
He began taking enzymes to help his body absorb food, along with Polycose, to increase the calories in his food. He started gaining weight. After 2 years of this regimen, he finally hit the 10th percentile for his weight and no longer fit the clinical criteria for Failure to Thrive.
Then the behavioral problems began. That has been our biggest battle since before he was 3. Nobody knows if the ADHD, ODD, tics, and night terrors are related to his pancreatic insufficiency. Could the lack of nutrition have inhibited his neurological development? Nobody knows. It's his own private mystery that will probably never be solved.
So I get it. I've driven around the county, searching for answers. I've taken my son to an appointment a day for a full week. I've had to hold him down, screaming, while some strange woman poked him with needles. I've cried as I tried to feed him, begging him to eat so that he could gain any weight, any weight at all. I've been kicked, punched, spat on, and told that I'm stupid. I've chased him as he ran out of the house, into the street, dropped his pants and peed because I wouldn't let him do something he wanted to do. I've dragged him out of countless stores, museums, parks, and birthday parties, kicking and screaming. I have fought with the school district, desperate to have him assessed. We have paid thousands of dollars out of pocket to take him to the best local pediatric neurologist. I have been up all night, comforting him through his night terrors. I have cried for him as the invitations to play dates dried up. My husband and I sat through 10 weeks of a parenting class for children with attentional problems only to have nothing work in practice. I have held my sobbing little boy, who because of his fine motor difficulties, thinks that the authors of his school books hate him and think he's stupid.
I get it.
And I also wouldn't change my little boy for anything. That is the greatest gift he has given us -- the full-contact education in unconditional love.
You know that you've felt like "one of those parents" yourself. I know that I do on a nearly daily basis and I struggle to ignore what others think of me so that I can focus on my children. Here's a powerful testimony from a father of children with special needs: One of Those Parents
