We are lucky to have a 2nd post by Kristi, who is the mother of a young boy with epilepsy. Here is "Part 2" of her post on parenting a child with epilepsy. -------
We have entered a stage of holding with our son’s epilepsy, which we like to call behaviour management. He is mostly seizure- free, with only break through seizures that we have to worry about. They are predominantly myoclonic jerks, which means they are less dangerous than the drop seizures or tonic clonic seizures he has also experienced. That said, we are now in less of a crisis- management stage, and are trying to maximize his developmental potential during this pre- Kindergarten time.
We have self- referred to Occupational Therapist, Physical Therapist, Early Childhood Intervention play therapist, Speech and Language pathologist, etc. We had to self- refer because when we see our neurologist, he remarks that Sam is doing really well. And he is, compared to children having many seizures a day. However, the meds he is on are wreaking havoc with his personality, and with his ability to cope, to listen, to be still- all very important school skills. He is stiff and awkward, he has a hard time regulating his voice level, he struggles with eating neatly. He obsesses about different foods, different activities, and sometimes seems to get ‘stuck’ asking for the same thing many times in a few minutes, even if he has been told ‘no’ or ‘wait.’ This is exacerbated when he is hungry or tired. At home, we are able to cope with these things, though being a busy household, it is often a matter of juggling between my husband and I. Going out in public is another matter.
As with any child who has special needs, we need to really plan our life and activities around our sons’ ability to cope in those situations. His reaction depends on the time of day, and what kind of activity it is. He gets over- stimulated and overwhelmed easily. He melts down when he can’t get his own way. He yells, cries, runs. He is five, but behaves like he is two in his ability to cope, and so we manage, but amid stares of judgment. I often wish we could just stay home, or at least tattoo: “Our Son Has Special Needs” on our foreheads. We live in an increasingly understanding society, where children with special needs are almost integrated, yet in a small town, we stand out.
With all of this stigma and judgment comes hurt and anxiety, but mostly just a desire for our son to lead a normal, five year old life. To that end, we strive to enroll him in activities we otherwise include him in. It just takes more planning and preparation on our part as his parents to help him be successful. As an example, he loves music, so we signed him up for a Music for Young Children 10- week class. By week eight, he listened and participated for half of the class. So this is obviously a process. And while I felt like the other parents, and even some of the children were judging my son’s behaviour, he was oblivious. It was me who felt this hurt and exclusion.
As parents who have become almost experts at advocating for our child, we signed up for a very comprehensive assessment at a Kinsmen Children’s facility in Saskatoon. After waiting almost as year, and making phone calls, just to be sure we were still on the waiting list, we got in. And the whole time we were on the list, and then after we got our appointment card, in the time leading up to it, we worried. We worried because we know there are many children who need services just as badly, if not more than our son. We were concerned that our perception of his needs were just that of overwrought, exhausted parents who didn’t have a real clue where he should be at developmentally. We, as is common with parents of special needs kids, were worried that we were overreacting. As it turned out, he should be seeing his OT/PT twice as often as he is, doing a regular physical therapy routine daily at home and in a random sampling of five year olds, he would be in the bottom percentile for development, skill and ability. He was likened to a three- year old.
So we should not have doubted our ability to assess our own child. We should have ignored our neurologist’s five minute assessment and pushed harder to get our son’s needs assessed. We should have realized that there is a fine line between advocating and being pushy, and that generally, we are not pushy people. We should have known that we spend a disproportionate amount of our time meeting our son’s needs compared to our other children’s needs. We should have trusted our parental instincts and gut feelings. Parental a child with epilepsy can be full of “we should haves,” because there is no handbook. And with the amount of seizure disorder types, the lack of firm diagnosis in many cases, and the variety of anticonvulsants used there are even few resources that seem to apply.
Again, we need to look objectively at our son- how easy is that to do? As other parents of kids with epilepsy, you know it is difficult. He IS doing well compared to so many other ill children out there, with far more serious and life- threatening disorders and illness. And we want to raise the standard high, until he gives us reason to lower it. We want to reach for the stars with our son, just as we do with our daughters. And we do have hope. We have a great team who work with our son and with us, to maximize his potential. We have a support system of family and friends to rival no other, one that really does want to know how we are doing, what is current and how they can help. And my husband and I have each other. We seem to work better as a team when we are under stress. I often wonder if it would all fall apart if we had no ongoing stress, but with five kids, a farm and everything that goes with that, a lack of consistent stress anytime soon seems unlikely! The other thing we have, is our loving, boisterous, energetic son, who always has time for a hug and always wants to snuggle at bedtime. That is the best therapy of all. -Kristi