Whatever it Takes

It has taken me and the Hubby a long time to get where we are today when it comes to the advocacy of our teenaged son. It has been a long, hard road, that both of us never thought we would be going down. It’s a road that has made us better parents, and better people. It’s an experience that has turned our fears into fearlessness.

It began almost 15 years ago, when concerned family members pointed out that Spiff wasn’t hitting developmental milestones that other children in the family had. There were many nights of screaming, crying, colic, and vomiting. There were trips to my in-laws, where we would walk in the door, hand off our little bundle of “joy” to his grandparents, and we’d disappear in the finished basement to sleep and regain a bit of our sanity again so we could wade back into the trenches.

We begged our pediatrician to help us. We were told to “take him home and love him”. They checked his physical milestones and since they were within normal range of his age group, they couldn’t understand what we were fussing about. “He’s fine”, they’d say. “It’s just a phase, he’ll outgrow it” we were told. We felt helpless, and powerless to help our own child. We felt like horrible parents, and didn’t understand what we had done wrong, or what we needed to do next. It was very bleak.

We did playgroups, but not with the normal success that other kids enjoy with them. Spiff played around the other kids, not with them. He didn’t want to do the group activities, and chafed when we tried to get him to join in. Some days were better than others, and there would be the odd day where he would participate, would engage and we’d think, Maybe this is it, we’ve turned a corner, only to arrive the next week and he would have to be carried out kicking, screaming, and crying. I spent a lot of time making excuses, explaining my son’s behavior and my parenting skills. I began to hear the same excuses time and again come out of my mouth. We stopped going to playgroups. We began to isolate ourselves so we didn’t have to explain anymore. We stopped socializing, unless people came out to our house, because it was easier on everyone, but mostly it was easier on Spiff. When it was easier on Spiff, it was easier on us. That became our family motto.

Help came in a most unlikely place. One day Hubby brings home a pamphlet from work; our town has a Parents as Teachers program, and evaluations and services are free if you qualify. I called and set up an appointment, and a lovely woman named Julie came out and played for several hours with Spiff, making notes as she went along. She explained that through play she could determine what his strengths are, and help assess his weaknesses and offer assistance in helping him with them. She did feel that he did have some issues, and that she could help. We would meet for 2 years, once a week, and her support for both of us was invaluable. Besides her input, a family friend came out and evaluated Spiff and felt that he suffered from Sensory Integration Disorder. Finally, armed with these observations, (and a new pediatrician!) our insurance company finally agreed to send us to the nearest children’s hospital for further evaluations. We finally felt like someone was actually listening to us, and not thinking all we were doing was complaining! It felt wonderful, and yet so scary. What else was waiting for us around the corner?

We didn’t need to wait long. A diagnosis of PDD-NOS (Pervasive Developmental Disorder- Non Origin Specified) was what awaited us. We were also told, with intensive therapy, he’d outgrow it. We sailed home on those wings of hope that with a lot of work, and love, we could beat this thing.

We were wrong. They were wrong for deluding us like that.

This is not a disease. There is no “cure”. There is lots of hard work, therapy (for you and your child!), blood sweat and tears, and love. There are good days and there are bad days. There are days when you trust your instincts and there are days you don’t know which end is up. There are times when you do think you just might have licked this thing, and then you are quickly reminded that it is all a work in progress. You can experience some of the highest highs, of seeing your child master something you never thought he would accomplish, that others take for granted; and you can experience some of the lowest lows, of being called into conferences, and told your child is no longer welcome in a class, or that they don’t have the services you require any longer at your place where you receive services.

It’s everything about being a parent, but with an added twist. And that twist doesn’t go away. But it does change over time; into a rich, rewarding existence where you learn more about yourself, and what you and your child are capable of.

When did we get our wits about us? Well, it didn’t happen overnight, and I still make some mistakes along the way. I’ll admit that there are times in an IEP meeting I get intimidated among all the administrators and staff that make up my team. I don’t want to make waves, truth be told. These people have to educate my child each and every day; and I don’t want to make them resent my child because of my attitude in a meeting. (I also have to work with these people!) Unfortunately though, I have found that unless you are assertive about what you want for your child in that environment, you usually only get the bare minimum until you make those waves. I absolutely hate being the bad guy, but when it comes to my children, scratch that – ANY child, I am more than willing to throw the most obnoxious temper tantrum to get the attention directed at what can help them.

I decided that the only people who were looking out for my child’s best interests as a whole was the Hubby and I. Every child deserves to have the same educational experience as their peers, including my son.

I set my child up for success. I don’t take no for an answer if I know it can be done. I question authority when necessary. We don’t accept anything less than what Spiff can (honestly) accomplish.

I know that all children will get from point A to point B; but there will be many different paths taken to get there; and not just the standard one will apply. I suggest re-writing the rules so that your child can participate with his peers on his terms. I have.

There is still a lot of fear left. We don’t know what the future holds for Spiff, and if it includes a “sleep away” college or a local community college; but we know it includes a college. We don’t know what will happen after Hubby and I are gone. There is still a lot of ground to cover.

What we do know is that we have come a long way from parents who didn’t know what we were doing as new parents; to dealing with a diagnosis we had never heard of; to finding our voice and making sure that others do right by our son. His younger brother may also have some issues as he gets older; but you had better believe that we will be just as vocal for his rights as we are for his brother.

Because when it comes to our children, there is nothing we will not do. Don’t you agree?

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