A little boy around eighteen months old had a seizure and turned blue. His mother called 911, and started CPR. He lived. He also lost all of his words, and most of his physical skills. He began receiving at home therapy from the local Early Intervention therapists. His mom cried for his losses, and cried with gratitude for the help.
The hospital had sent him home with nothing more than a “febrile seizure” diagnosis, meaning seizure caused by fever. His doctor, a family practitioner and not a pediatrician, was not alarmed by his loss of skills. Or his tiny head, or his misshapen teeth. There was no further testing.
As he began to speak again, he was not understandable. He mostly used vowel sounds. He was awkward and uncoordinated. He did nothing “on time.” His mom cried for his struggle.
When he had another seizure, he got diagnosed with an unspecified seizure disorder, and put on medication. His therapists doubled down and worked him harder.
His mom was terrific. She loved him no matter what, and found the humor in his foibles. He was cuddled, kissed and hugged constantly. Mom never missed appointments, and followed through with what the therapists recommended. When he was three, he began outpatient therapy. He got me. I pushed him hard for understandable speech. I became friendly with mom, whom I admired. When he was four, I told mom that for his benefit, we needed to change things. She needed to stop coming into the therapy room, because we needed to get him to the point that he would separate from her. It was required for school, which was going to come around quickly. She agreed. We walked him to a therapy room, she said, “I’ll see you when you are done,” and I closed the door while she went to the waiting room. He screamed for thirty minutes and beat on me while I sat on the floor with my back against the door so he couldn’t escape. I kept reassuring him that as soon as he was done screaming, we would do our work, and when done, mom would be waiting for him. Thirty minutes. She could hear it all, and I’m sure it nearly killed her, but she stayed in the waiting room and cried. After thirty minutes he stopped. I looked at him and said, “Excellent, let’s go play the fishing game!” We got thirty minutes of therapy time in that day, and he never had a problem leaving her in the waiting room again. Progress!
By having him alone in therapy, mom was no longer able to answer questions for him, and I became aware that we weren’t just dealing with delays and a severe articulation problem. He also had an auditory processing disorder. When asked a question, he had up to a forty-five second delay before he answered. In most conversations with a child, if you ask and they don’t answer, you fill in the quiet time. I had to learn to wait for a response, and teach his mom to wait for a response. It explained why he didn’t follow directions very well. I realized that this was going to be a huge problem in school.
When he was five and eligible for Kindergarten, his mom was distraught. She didn’t feel he was ready, and since he was still napping, didn’t feel he could tolerate the whole day. (Children with special needs often continue to nap long past when their peers have stopped, as it takes so much energy to just stay on task and move the body). His therapists felt that he was functioning more like a three year old than a five year old, and knew he would struggle. A half day was agreed upon. It was horrendous. For everyone. He couldn’t do the work. He couldn’t stay in his seat. His teacher could not understand him. He cried. His mom cried. He repeated Kindergarten the next year.
When he was seven, he went to first grade. Three weeks later his mom was called in. He needed to go to Special Ed. He could not be managed in the regular classroom, even with accommodations. He was just too far behind, too different, too immature, and too slow. His mother cried buckets.
It was not long after this that mom came to me, and asked me questions that would impact me for the rest of my life. She came into my office, and said, “Tracy, is my son going to need to be taken care of for the rest of his life? Is he ever going to have a job, or get married? Is he going to need to live with me forever?” And, she cried.
I was stunned. I had no idea how to answer her. I cared about her and her son, and I was humbled that she brought these questions to me. But, I realized that I honestly didn’t know how to answer. I realized that HOW I answered mattered a great deal, and that I had to find a way to be honest, while at the same time not adding to her devastation.
These questions impacted me for life because I realized on that day that parents have every reason to be positive and expect good outcomes when their children are small. With therapy and follow through, many issues are overcome. At what point/age though do we start to consider that despite good medical care, good therapy, and good education, a child is not going to be able to develop into an independent adult?
I think most doctors and therapists will tell you that the more diagnosis’ a child has, and the more severe the issues, the poorer the outcome is likely to be. Therefore, in this case, when the boy had a medical condition (seizures) and displayed a lower than normal IQ, and had severe articulation disorder, combined with auditory processing disorder, and then later a sensory processing disorder…this child’s chances of overcoming all of those obstacles to eventually be considered “normal” and independent was very slim.
The conversation that I had with this mom went something like this: “He is seven. He still has a lot of time. He has consistently made progress in all of his therapies, and I have no reason to think that he will stop making progress. But, what will this look like when he is eighteen? I honestly don’t know. I think that there is a chance that you will have to help him. But, you are an expert at that, aren’t you? Either way, I know that your love for him won’t change.” It was enough for that day.
I find that many, many people outside of therapy don’t understand a basic concept – even some doctors and teachers. The simple fact of the matter is that a “delay” in any of the basic areas (fine motor movement, gross motor movement, cognition, speech and language, self-help skills, and behavior) is nearly impossible to completely overcome. But, listen to what I am saying. When a child turns a year old, and hasn’t said their first word – this is not a crisis. We all know that there is a range of what is considered “normal.” But when that child still hasn’t said a word four months later, it is time to worry a little, and make an appointment for an evaluation. Why? Because by the time you make the appointment and get things going, your child is going to be turning 18 months. If they haven’t started talking by then, they are officially six months behind. Again, not a crisis. What people don’t seem to understand is that while your child is turning 18 months old and isn’t speaking at all, the toddlers who did start talking on time now have a vocabulary of 15 to 25 words. Guess what happens when children turn two? If they are “on track” they now how 50 words, and are starting to put two words together (up me! Daddy no!). Child development works that way, in basically six month increments, until they graduate high school. Therefore, a child at 18 months old who starts therapy non-verbal may very well have developed a fifty word vocabulary and started putting words together by the time they are two and a half, but the other two and a half year olds have now increased vocabulary to two hundred words, and are putting together three and four word sentences. The child in therapy has made enormous progress, but is not “caught up.” More therapy.
What this translates into is this: a six month delay is not a huge deal. Being delayed by two or three years is a huge big deal. Children have to master a skill, not just be introduced to it. For children with impairments or learning disabilities, they might have to work on a skill for months to master it. I have in my career only seen two children make two or three years’ worth of progress in one year. Kids in therapy typically make slow and steady progress, making an occasional giant leap in a skill level, and then plateauing for a while (getting stuck at a level).
Here is the kicker: Despite the hard work that a child does in therapy, and all of the practice that they do with their parents, moving up a level or gaining a new skill doesn’t counteract the fact that all of their peers have also moved up a level and gained new skills as well. The moderately to significantly delayed child literally never stands a chance of reaching the same level as their peers and then remain able to keep up with them. The peers keep moving on too.
So, is it “worth it” to put a lot of time and resources into a child with significant impairments? I know it is. In all of these years of working in therapy, I have only met four children who were so significantly impaired that they literally made no progress in therapy. Two of those children were so physically and mentally damaged that it was honestly a wonder that they survived (one has since passed away). The other two were so severely autistic that we just could not get them to do anything. However, out of the thousands more that we have worked with, every child has made at least some gains, many children have made tremendous gains, and there are some that after four or five years of therapy were able to perform in school and society without any additional help or support.
It is my belief that every child has a potential; but what that potential may be is often unclear until we start working with them. Even when it becomes clear that a child has limited potential, I believe that it is our duty to help them reach that potential – whatever it is. Every self-help skill that a child learns, from toilet training to feeding oneself gives them just a tiny bit more independence, and allows a parent to do less. Every word spoken is a gift. Ask any parent of a sixty pound non-walking six year old how important it is for them to walk (because they are getting too big to be carried), and they will tell you that nothing would make their lives easier. Beyond that, I believe that every child, no matter how serious the issues, should have moments in their lives when a parent and therapist clap and scream, “Go you! That was amazing!”
The seven year old boy talked about previously is now a teenager. He still requires special education, and therapies. It is STILL unclear after all of this time what we can expect from him at 18 or 21. On the one hand, when engaged in a task that he enjoys, he has real skills and a work ethic. He is kind, and mostly cooperative. On the other hand, he is immature compared to his peers, is functioning at least two grade levels below his age, and has social issues in addition to a significant speech impediment. Will he be able to work a job? Live on his own? I still can’t say.
There comes a time in each parents’ journey, whether their child is 7, or 12, or 16, where the parent asks themselves, “What can I expect of this kid as he/she approaches adulthood? Is this kid college or trade school bound, or are we looking at a job or perhaps the armed services?” For parents of kids with special needs, there are many more questions, none with easy answers. “Should he stay in school until 21? Should we look for programs that provide job training? Is he safe to be in the community by himself? Should we keep him home and apply for disability? Should we look at group homes or other living situations? How can we best protect our child, and allow him as much independence as possible?” Along with these questions then comes the heartbreak of starting to do research and finding that there are very few “transition” programs out there.
It may say eighteen on the birth certificate, but many of these kids are still intellectually, emotionally, socially and behaviorally more like twelve. They aren’t children anymore, but if you get them a job bagging groceries, they are likely to not understand how long their shift is, that they can’t take a break when they want to, not be able to figure out how many cans can be put in one bag, or that seven glass bottles in one bag is a terrible idea. They are likely to say something to a customer that is likely to be construed as rude, at best, or wildly inappropriate, at worst. They may be able to do that job, and do it well, if they have a trainer work with them, side by side for six months. But, those programs with trainers are far and few between, there is a waiting list, and those programs haven’t received funding from the State of Pennsylvania for eight months. How many slots do you suppose will be available in one county this June when the school year ends? Understand that without these programs, our only choice is to sign these kids up for disability or welfare.
I want the community at large to know and understand that parenting a special needs child has all of the elements of “regular” parenting, plus a thousand and one more challenges. Painful medical tests. Out of pocket expenditures that cripple the finances. Judgement from others (“If those parents just disciplined him!”) Many, many appointments. Transportation issues. IEP meetings. Having to work with your child, and other parents to try to form friendships. Watching other parents take their kids to baseball and soccer games, while they are taking their kid to therapy after school – the very idea of their child playing on a team as foreign as considering taking them to Belgium.
If my friend with the teenager with special needs still cries, she does it privately now. At some point she was able to accept the situation for what it was, and love her son with all of her heart despite his issues. I admire her to no end. Her patience, her strength, her refusal to give up or give in. She STILL takes him for additional therapy over the summer. And, because she continues to push him to be the best that he can be, and because he is surrounded by love, I still can’t say what his future holds….but I am totally hoping that one day he’ll be in the community, working a job, making people smile. He deserves that. She deserves that.