As a special needs mom, of two, I have gone through a lot, emotionally. Both my boys have SPD but, the oldest has a slew of acronyms that follow his name in folders somewhere and in explanations given out to strangers for this “odd behavior” or some kind of reaction. The youngest has auditory processing issues and some motor delays but, all in all they are good boys.
With each new diagnosis, came new grief, new understandings and realizations. Along the way, I will admit, I left their father behind. As sometimes a support system for other mothers online, in the group I run, I know how the wheel of diagnosis goes. For women, it is usually, denial, grief, digging for any and all information, which includes reaching out to other mothers or doctors who might have understanding and information and then acceptance, which is then eventually followed by some form of advocacy. I also know how it usually goes for a vast majority of men as well. They usually will get stuck in denial.
As mothers it is extremely frustrating and we begin to carry the load on our own. Doing the research, listening to those that came before us who might have a better way, searching out doctors, therapists, OTs, PTs, and SLPs, anyone who can help us find a better way, a new idea, suggestion or understanding so that we don’t feel alone. We obsessively try to tell all of this to the child(ren)’s father and/or family but, he/they is still in denial and either refusing to listen or they’re now overwhelmed. We take the kid(s) to their doctor’s appointments, therapies, counselors, etc. Men, delve down into their work, something safe and familiar. After a while, we will often times find ourselves at odds over the child(ren) and what is going on. Often times, I joke this is the in-law syndrome: where the in-laws or the rest of the family can’t see, can’t accept and can’t come on board.
As a mother who left her children’s father behind, whose in-laws were cruel at best and whose family didn’t understand, and as a special needs mother who has many special needs mothers as friends, I have this to say to the fathers and families that can’t get out of denial, that can’t join their children, grandchildren, nieces and nephews in the here and now and join us in making the best of it, I have this to say:
1) First and foremost, please get out of yourself enough to realize that these behaviors that you see are not all about you. They are not out to personally irritate or attack you. This is how our child is wired and since you cannot see what ails him and how his world works, the following list is to help guide you.
2) Please really take a moment to learn from my sons’ doctors, therapists, counselors, and mother! Listen to and read the information that they provide you. It is not all about discipline, consistency and whatever other bunk you want to say to make us mother’s feel like a failure. We are and have been doing everything you are trying to tell us that we did not and it really is to no avail!
3) Yes, all these OT, PT and SLP sessions ARE necessary. After all it is your wish that my son still grow to be a football player and have a boat load of friends. Though in reality I know that these dreams of yours might be a bit off, and am content with my child simply being safe and happy. These therapies though, could be his only way to find a leg up and function on the level not only I would hope for him someday but, for the level you demand.
4) Again, the whole world is not about you. I’m sorry if we can’t go the family reunion, or the birthday party or the holiday get together but, a) my sons cannot handle the stimuli and b) since you find them so irritating and there is no reason for them to behave this way (according to you), it is in their best interest as well as yours that we not attend.
5) No amount of yelling, or “discipline” is every going to work in the way you think it will. Most likely your version is going to make it worse! So, please listen to me when I tell you that this is not how it works my sons.
6) When myself or my child(ren) tell you or try to show you that they NEED something this way, they literally need it to be this way as being at your house, this restaurant or this different park is extremely hard for them and they really are doing their best to be good in this situation.
7) When they refuse to try a food, touch an item, wear a certain article of clothing, please STOP trying to force it on them and then get upset with them because they are losing it and can’t bring themselves back down.
8.) And this may be my own boys’ paternal grandparents, do not EVER say “they will never be normal” or “there is always something wrong with him”. This is one way to ensure that your time with your grandchild(ren) is cut in spades!
9) Try supporting the mother and even the father in some way. Even just a simple, “you’re doing a good job today” is like some kind of superhero drug to the worn out, stressed, at-her-wits-end mother. And for the father, that support might allow him to support and be there for his own family!
10) If you see my children jumping on the bed, or jumping off of the couch onto a makeshift crash pad on the floor, or there is sand, beans, playdough, or some other textured objects out, do not say a word about the mess or inappropriateness of the whole house. This is our life, we do therapy of one kind or another every two hours here and yes, our whole lives revolve around it and rightfully so. It does so right now in the hopes that one day it won’t always be like this.
If these are not acceptable to you, then you are more than welcome to not come over, not invite us to your functions, not participate in our lives and most importantly, keep your uneducated opinions to yourself! This may sound harsh but, it is not my job to console and help you. I have two boys that need my time, attention, patience and while I love them and adore them, can’t imagine life without them. Things I will gladly be willing to extend to you, if you wish to learn, to participate and to enter our world with an open mind.