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!

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.