The Impact of Denying That A Child Has a Disability

Denial is one of the five stages of grief. It is how many people cope through the day; if they had to think of a "problem" or be realistic, then maybe they would "fall apart"; maybe not even be able to function through the day. Whether it be denying that there is a plumbing, marital, or workplace problem, eventually the truth will surface. Unfortunately, when denying (for a lengthy amount of time) that a child has a disability, developmental delay, or other special need, it is not helping the child any. I do believe that all parents will go through at least a short-term denial, and that is normal. But when it lingers to the point that the child is not getting the help that he or she needs, then I perceive that to be unhealthy.

Common things I see a parent denying is that:

• The child needs genetic testing or other specialized testing such as an EEG or MRI
• The child needs to see a specialist such as a neurologist, orthopedic doctor, psychologist, etc.
• The child has more delays in development than perceived by the parents. This may be as simple as the parent cancelling therapy (speech, physical, occupational, ABA) sessions often because they are not deemed that important or as complicated as the parent refusing to follow through with a school district's or health care professional's suggestions such as receiving special education services
• The child's need for a wheelchair. Even if the child learns to walk someday, they need an immediate means of mobility and to be upright for socializing with peers; mobility helps the child's self-esteem, endurance, and attention span

So why does this bother me so much? Well, so often I know the child could be functioning better. But also I know that one day when that child's legs are so stuck in a certain position that he needs surgery just to stay out of pain or when that child still can't read and write well in the 3rd grade, that the parents are going to regret the choices they had made 5 years prior. So many of the parents that either deny or just don't realize that the child's disability is as severe as it is, feel extremely guilty once reality hits. I especially find this to be the case with parents of children with autism or severe learning disabilities. They beat themselves up for not detecting the early signs or just blowing them off. I will sign off by saying if you have fallen to a bad case of denial, then first of all forgive yourself and ask your child for forgiveness. Then, move forward and be your child's strongest advocate. You can't ponder on the past, but you can change the future!

Preschool Readiness: Explaining Disabilities to Other Young Children

t's time to start preparing for back-to-school or the first time to attend school. I work with children with disabilities under the age of three years of age. So, when they go to "school" it is usually one to three days a week at a local preschool or at a church's Mother Days Out (MDO) program. A couple of worries that many of the parents have in sending their young child with special needs to school is "Will the other children understand my child's issues?" and "How will I explain my child's disabilities to the other young children?". I usually respond by telling them to meet with the teacher ahead of time and discuss how you will handle it. Usually giving the other children a short explanation on the first day of school solves the problem. I think that this is a hard thing for some of these parents due to past experiences. Maybe they had other children just stop and stare at their child in public. Or even worse, they have had another adult do the same thing. Typically developing children are more understanding than we give them credit. It is often the parent of the typically developing child or another adult in their life that mishandles the situation or causes a fear reaction. Because if you just give the child a short explanation when they are staring, and tell them not to stare, that usually fixes things.



I like to think that my children will learn from example. I try to treat all people with respect. When I see another person in the elevator or stand next to someone in the grocery store line, I look them in the eye and talk to them...no matter the race or if they have a disability. So, teaching my children to treat others with respect hasn't been hard so far, because they see their parents doing it already. This can be the root of the problem in explaining disabilities to other children...they haven't seen their parents interact with persons with a disability or haven't seen them show respect. This includes making fun of people or insulting someone by calling them "retarded"....how rude can you get! When I hear another person do such a thing, I am sure to set them straight!



When I am explaining a child's (or adult's) disability to another young child, I keep my explanations simple. I am thinking back to how I explained things to my now 5 year old daughter when she was 2 1/2 or 3 years old...I definately kept is short and simple. Although I am an occupational therapist and have taken my daughter to birthday parties of some of my young clients, she has also been exposed to persons with a disability elsewhere including church, stores, and our home.



When I explained to her about a child or adult who is visually impaired, I simply said "Her eyes do not work the same as ours do. Her hands and the special "machine" she has helps her to see." I did not explain the diagnosis or why the child was visually impaired nor did I talk about all of the intricacies of the adaptive equipment the child might have had. For young children, the simpler the better.



When I explained to her about a child or adult who uses a wheelchair, I simply said "His legs do not work the same as ours do, the wheelchair helps him to get to places." The only problem I had with adults in wheelchairs who were strangers was my daughter asking if she could take a ride. This is because one of our good friends who is paralyzed lets her sit on his lap and "go for a spin".



When I explained to her about developmental disabilities such as an Autism Spectrum Disorder (ASD) or Down Syndrome, I never told her the "diagnosis". I simply said, "He can't talk or play the same you and I do." This was enough for her, and she would play with them on the level that they could play. She even learned more sign language than I had initially taught her.



I think that my daughter now understands all of this better than some adults do. This last school year in her preschool class she enjoyed playing with a young boy with a severe speech impairment. She liked "translating" what he had to say or meant by his gestures. She had fun giggling and playing with him, and wasn't even the slightest bit bothered by his disability. She even seemed understanding when he had meltdowns and tantrums!

Food Allergies & Vacation

I just returned from vacation. We had lots of fun! Since both of my sweet children have extensive food allergies, I must really plan ahead for food during our vacations. It would be a lot simpler to pack for a trip if I didn't have to think about every meal and snack for each outing, but by now I have come quite used to this. It is a serious problem if my children eat a food they are allergic to. This is why I always have the jr. epi-pen and lots of benadryl in my purse. They both have had anaphylatic reactions (hives, dropped blood pressure, throat closing up) since being small babies.

I first knew my daughter had food allergies around 4 months of age...she is now 5 1/2 years old. What gave it away for sure that she had food allergies was that I looked down at her chest when changing her clothes about 20 minutes after I breastfed her, and saw at least 100 little hives on her neck and chest. Since I am a healthcare worker, I was probably alot calmer than most moms. I made her vomit, washed her off, and gave her benadryl. She got worse, so I drove her to the doctor's office. They gave her epinephrine, because by this time she looked white as a ghost yet flushed at the same time. I remember this day like it was yesterday! After thorough testing it was revealed that she was allergic to egg, dairy, nuts, soy and wheat. So, since I breastfed her I had to avoid these foods for then on. The only other choice was to feed her an elemental formula, but those are bitter tasting and expensive. So, I chose to continue breastfeeding her. She has now outgrown all of her food allergies except for dairy, eggs, and red food dye....3 biggies.

In terms of my son, I was absolutely for sure he had food allergies by 2 months of age. But I had my suspicions at 7 days of age when he had projectile vomitting after being breastfed. I know the difference between infant reflux and vomitting, and this was definately vomitting. The other clues were redness around his bottom, a runny nose, mucous in the stool, and a significant amount of gas. He was too young to test for food allergies, so the doctor suggested that I avoid eating dairy, nut and egg products. At 5 months of age he was old enough to be tested and the results revealed: soy, dairy, peanuts, almonds, eggs, and oats. He is now 13 months old. I just recently weaned him and he drinks hemp or rice milk for calcium. On a good note, I was finally able to eat anything I wanted as of last week when weaning was over with....so vacation food was more fun for me!

While packing for the trip I thought of every little outing we would be on and planned accordingly. Most restaurants even add butter for flavor to vegetable dishes, so I brought lots of produce. I got us a room at the hotel that had a small refrigerator for all of my kids' special foods.
It seems like I had to explain many times on our trip why I was bringing in food to an amusement park or other facilities that do not allow outside food. After many minutes of explaining, I was let in with the food each time. The sad thing is that these places sell alot of junk food (nachos, candy bars, slushies with food dyes, etc). My children eat lots of fruit, veggies, and foods with little or no additives. Because of this my kids are probably much healthier than the kids who don't have food allergies!

Most importantly, we had so much fun on our trip. Seeing the smiles on my two children's faces and looking back at the souvenirs and photos makes all of the extra planning worth it!

Being on the Same Page

As parents my husband and I should be on the same page when it comes to our parenting styles and discipline. But sometimes we are not. The most recent reminder of this was yesterday when my 5-year old daughter looked up at me after I had asked her to do something, and said, "Mom, you are the leader." So, I responded with "What do you mean?". With quite a serious look on her face she said "Well, you are the one that makes up the rules and makes me mind." Of course, I knew where she was going with this. She knows that I am consistent with discipline, and she can persuade her Dad to bend the rules. I then added "Mommy and Daddy are both in charge and we try to make the rules be the same." She smiled back at me, but I'm not so sure she believed what I was saying. After all, 10 minutes prior to this conversation I took an ink pen from her toddler brother's hand. And where did he get this pen? That's right, from Dad.



Children need predictability in their life. They need to know the rules. This means that parents need to be on the same page, at least most of the time. My children are typically developing, and I find it difficult for my husband and I to agree on all parenting issues. Although, we do agree on most issues. It must be even harder for two parents to agree on their approaches when the child has special needs. Unfortunately, while I am at work it is not an uncommon sight for me to see parents on opposite ends of the spectrum in their approach to parenting. So often, one is more leniant because they are a "softee" or feel sorry for the child. The other parent might be stricter and expect more of the child no matter if he has a special need or not. Of course this depends on the special need, if it is medical, developmental, or learning problems. However, these children need consistency between their parents more than anyone else does.



Some suggestions on how to get on the same page on parenting your child with special needs are:

• Discuss your opinions and how you will respond to things before the situation arises. Do not bicker, argue, or debate in front of your child. This is super confusing for the child and lets them know the two of you are not in agreement. This is especially the case for a divorced couple. So, unless the child is in harm, don't disagree with the other person in front of the child.


• Understand the rules at daycare, preschool, the babysitter's home and other places that your young child may be during the week. Try to use some of those same rules at home. This might include not eating a snack before washing hands. It might be that the word "stupid" is considered a bad word; if they can't say the word at school, don't let them say it at home.


• After therapy sessions (physical, speech, occupational, or other), discuss any techniques that might need to be updated by the parents. If the speech therapist recommended only giving the child a small amount of food at meal time so that the child needs to request more food with sign language or words, then do this at each meal if possible. And all caregivers need to carry this out, not just the parents.


• Be consistent and predictable. If the child's behaviors start to improve, don't all of the sudden switch approaches as this may alter the child's behavior again. Remember, that predictability can be calming. An example may include that if a toddler with feeding problems learned to chew food without gagging after 6 months of addressing the issue, then don't regress to offering him baby food because that is all you had in the pantry. Plan ahead if you need to, but if you let him have the baby food again, you just undid alot of the work. It may take another month to get him to eat table food or not scream when he does eat it.


• Keep open lines of communication. Discussing how to address behaviors that the child displays may need to be done on a regular basis; maybe once a week or once a month.


• Give lots of praise to your spouse in front of the child and in private. It is not easy to be a parent and it is even harder when there are special circumstances
  

Now, I hope this weekend and next week on our family vacation that my husband and I can be consistent with our parenting styles. I know that times where we are in a hotel and out of our environment can be a true test for us!

Tantrums in Young Toddlers

Tantrums are not exactly fun for the parents. Somehow over night my 13 month old son went from a well-mannered baby to a toddler who is trying to figure out which behaviors are benefiting him the most. Let's see, last month he decided that he would try biting, then he progressed to pinching/ hitting, and he has now advanced to squealing. Although he can do an excellent piglet imitation, my husband and I as well as the babysitter are not too excited about the squealing. The biting and hitting diminished because I nipped that behavior in the bud. But the squealing is not so easy. Now, according to my mom, I was a late talker and when I squealed it was just as high-pitched as my son's squeal. So, I guess I'm getting paid back.



When my son squeals to get more food, then that is easy to redirect. I remind him to use sign-language for "more" or "drink". I do pause versus doling out food immediately, because he needs to learn patience and not think that his squealing got him the food right away. First, I label his wants, "Oh, you must want more food". He then nods, smiles, or becomes quiet. Sometimes he says "mar" for more or "nana" for banana. I then take my ole' sweet time, and if he remains quiet I give him more food.



When he squeals because his older sister took away his toy, then that is easily redirectible too. My daughter is a great kid, but because she is a perfectionist she says "Mom, I just took the toy away to show him how it should be played with. I'm just teaching him!". Of course, that is not how a 13 month old sees it when his toy is taken away.



When he arches back, squeals, or fusses when he is tired, that is also easily fixed. I put him in his crib for a nap or bedtime. I also try to read the signs that he might be sleepy way before the tantrum comes on. Looking at the clock doesn't work because he is advancing from 2 naps to 1 nap a day, but teetering back and forth. Signs that a toddler may give you that he is sleepy, is being less active, getting mad at the toys, rubbing eyes, yawning, or gazing off. When you miss these signs, crying or tantrums may sneak up on you. This can be easily resolved when you are at home, but not so easily fixed when somewhere else. I try to really look at my son's signals he is sending me before going to the grocery store or doing othe shopping. Because for some reason, I am not found of tantrums in the store.



As previously mentioned in other blogs and my profile, I work with infants and toddlers with special needs in their homes and in the community settings. One of the biggest questions I get asked is how to stop the tantrums. This is a loaded question, because the same behavior of squealing or throwing oneself down on the floor can have different reasons. So, I along with the parents/caregivers become investigators. I need to know what happened immediately before the tantrum as well as: How long ago did he wake up? Is he taking any new medications or new dosages? Has he been ill lately? Any unresolved food allergies? And the list goes on. I try to rule out any medical problems that are beyond the child's control. Often, a child with a language or developmental delay has a tantrum because he can't express his needs or wants, or he may just get frustrated later in the day or before naptime because of the extra energy he exerts having to figure things out. Children with delays have to work a lot harder than children who are typically developing. Other reasons for tantrums are to exert control, poor sensory processing, fear, or anxiety.



Be in tuned with your child and read the signals he is giving you to rule out the basics. Although this blog was aimed more towards the older baby or toddler, babies give off signals of frustration or being over-whelmed as well. They may cry, fall asleep from shutdown, be avoidant, etc. For explanations on why babies cry, go to http://www.sense-ablebaby.com/. Also on that site are ways to calm down a baby as these strategies may keep the baby from escalating into full frustration.