This post has been entered in Scribbit's April write-away contest!
***
Having children opens up a whole new area for discord between a couple. From day one there is an amazing scope for disagreement. The possibility for fundamental differences of opinion only expands exponentially as your child grows (as the issues get bigger and the outcomes more significant). When you have a child, not only do you have to navigate your way through uncharted waters as an individual, but also as a couple - and it can be a steep learning curve on both accounts.
What do you do when, as parents, you can't agree on certain parenting decisions? Generally, Mr. 3x3 and I have seen eye to eye on matters relating to our children. One area where we frequently find ourselves differing is in the area discipline. Mr. 3x3 would say I'm a big softie with the kids and I'd say he's too authoritarian (our disciplinary styles reflect the way we were raised). However, on the whole, we share a similar parenting philosophy and I'm happy to say that we are generally on the same page.
However, having a special needs child puts a strain on a relationship - both because the child is typically more demanding (for a myriad of reasons) and because you each have to go through the grieving process and find a way to accept and cope with your child's disability. You don't always do this in the same way or at the same time (in fact, the grieving continues in cycles, so you can be covering this ground over and over again for many years - but not necessarily "in sync" with one another).
It is hard to admit this, but at times Willow has put a lot of strain on Mr. 3x3's and my relationship. I think it is a testament to the strength of our bond that we actually survived her first year together, because it was so intensely demanding and we were both extremely depressed and sleep deprived during that time. It would have been easy to turn on each other, but instead we found solidarity (it was us against the rest of the world) and shared our thoughts, feelings and despair.
As Willow has grown we've constantly had to make decisions and find common ground as we try to determine everything from how to deal with her difficult behaviour and tantrums, to what approach to take with her extreme clinginess. We've also had to debate what treatment and therapy to seek out - when to draw the line and when to forge ahead.
Mr. 3x3 and I have often have very different feelings about how to deal with these issues and at times it has been extremely hard to resolve our differences. Somehow, with a special needs child, it feels like even more is at stake - the debate is more impassioned and the emotional investment is so much higher. And now, as school approaches, we have a new area we need to "battle out".
Mr. 3x3 and I have disagreed in the past about having Willow evaluated and tested. I've wanted to charge ahead with evaluations and programs and plans; he's wanted to adopt a wait and see approach. When Willow was little, our pediatrician agreed with Mr. 3x3 - he didn't think there was much to be gained by testing Willow until she was of school age. So we waited. Now that Willow is approaching school age I want to push ahead. Why? Because Willow will not get services without testing and without services I honestly believe we are setting her up for failure at school. I feel that we need to be prepared - armed to the hilt to get what Willow needs to succeed.
Mr. 3x3 worries that if we test Willow, she will end up "labeled" with a disability which will work to her disadvantage - because a label won't tell anyone anything about her abilities and all the things that she IS capable of. He worries that if she gets labelled everyone will treat her differently and not necessarily in a good way.
While I understand where he is coming from, I feel that he is in denial about the amount of difficulty Willow will have coping at school and the gap that still exists between her and her peers. I feel that he doesn't want Willow labeled because that will be admitting to the world that she is different. It would involve giving up his last shred of hope that one day she might wake up and be "okay". I think that everyone who meets Willow already knows that she is different and that "labelling" her won't be divulging a deep dark secret. It is there for everyone to see/hear. I think it is better to be upfront about it than deny its existence.
There are no right or wrongs here. We both start from the position of loving our daughter dearly and only wanting what is best for her. These kind of debates can be painful and hard but we've gotten pretty good and hearing each other out over the years. I still don't know where we are going with this one but I do know that wherever we end up, it will be fine.
Thursday, 8 March 2007
Eye to eye
Posted by Em at 1:30 PM
Subscribe to:
Post Comments (Atom)
12 comments:
My youngest child has had health problems all her life and it's been a struggle not to let it affect our marriage. As you said, you both love your child dearly -it's such an individual process, coping with a child who is having serious problems.
I know what you mean and this acceptance is a very hard thing to achieve. And you are right, it isn't anything that we can force on others either. You sound like you are dealing with this very well!
My husband wasn't so worried about the label as much as he didn't really see JP as that much different from his peers. At the time, we didn't know what other 2 1/2 year olds were doing. We didn't have any basis of comparison.
One thing that really helped move Dad along was a family reunion. We have cousins with kids the same age. It was shocking to see the difference. After that, he couldn't deny our delays. (Now I totally know that you shouldn't compare kids but...)
Another perspective shifter was involving Dad in more of the peer-to-peer activities. Much of the time it is us Moms who deal with the playdates. We see the language and social deficits. Dads tend to be there for one on one time with the kids. They don't get to see the variance. You can't register that there is a difference if you don't have anything to compare!
Anyway, hang in there. You guys will get through it. And remember, a label is there merely to get services. It does not have to define your child.
I look at getting a diagnosis as finally getting a map. Each disability has a different page in the atlas. It really is critical to know the name of our city before we can find our way.
My family resides in the metropolis of Autism. There are hundreds of city streets. We are exploring many of them and are even finding the best success by taking some of the unpaved routes that haven't even made it on the map yet! My son has autism but there is a huge city out there for him to conquer! Who knows, in the years to come he might even move out of the city!
Thankfully, Josh agreeable to whatever my decisions about KayTar might be. The only qualms he has ever expressed were medication related, because he is very cautious about long term medications. Because I am in charge of KayTar's schedules and care, and I am the one who talks to the doctors, he is generally on board with whatever the doctors and I have discussed.
In the current situation with Georgia, I would have to agree with you only because that window to be included in school programs and therapies closes so rapidly around her age. You are either in or out, and once you are out, it become infinitely harder to get into the programs if need be. And they won't keep her in the programs if she no longer needs them. So its safer to err on the side of too much rather than too little, if that makes sense.
Gosh you write so well, I can so feel what you are saying.
I'm not big on labels either but I am big on having a correct diagnoses. For me it makes a big difference in accepting things and how I deal with them.
I'm not sure what evaluations Georgia needs exactly and what the reports will state but I'm guessing that if they are worth the paper they are written on they will contain the good as well as the bad.
That said I know it is likely to still come under one heading. It's individuals that aren't prepared to see past the heading that are the problem.
At least that is what my experience so far has shown me. As you know my son is G&T and has a chronic medical condition and we have had reports done for both (one wasn't a report so much as information). I found that teachers that actually read the reports in there entirety and asked questions were the best, the one's that stay at just the label were the problem. As a result of the reactions from teachers we pick and choose the teachers that both kids have. The school know I am prepared to change schools if I feel it necessary.
I know for Georgia you will be dealing with more than just a new teacher each year and as education and support resources are limited I feel you are correct in making sure you have everything at hand that could help in ensuring that Georgia gets the help she needs and deserves.
My sister went through the same thing with her partner and their diabetic child. Her partner was so afraid of the child being labelled. Fact is though that since the evaluations and the help came in, the behavioural problems have decreased noticeably AND the partner's own way of dealing with the 'behaviour' has improved 100% so life is getting easier for all concerned.
I worry that other people who don't understand the special needs just take against the child because they only perceive a child behaving 'badly'. Which in a sense is a whole other way of labelling and MUCH less helpful...
I think your 2nd last paragraph sums it up perfectly, and with much compassion.
All I can add is that it's good you support each other, even when you don't necessarily agree. At least you have a clear understanding of the other's thoughts and feelings, and through that, you can forge your way.
Georgia is a very lucky girl to have such special parents.
Of course, it'll be fine. You guys are a great duo! This part really resonated with me:
in fact, the grieving continues in cycles, so you can be covering this ground over and over again for many years
How long have you known this? I've only been at "special issues" for a little over a year and I'm just now starting to accept this. That in of itself requires a certain grieving. Saying goodbye to my idea of "normal!" I'm sure you know what I mean.
Parenting is a challenging thing to do in accord with one another. It is true, we all come from different home environments and experiences and choices we make for our children are directly based upon our perceptions and emotional responses.
I have some thoughts. As a mother, I would encourage you to do whatever you need to do in order to ensure that the needs of your child are met by the external professionals. It is so very apparent that you do the most amazing things with your children; all of the children with each and every difference and similarity that they have. We only want what is best and will help our child to be the best they can be. Labelling is way to achieve some of those services or needs to be addressed. But, in contrast labelling can have a detrimental effect on a child. Children are so very perceptive, and as you have indicated, people who meet Georgia already know she is different. Within her own self, Georgia knows she is different. The trick is to encourage diversity within the class and at home. Yes, she is different from Alexander; he likes to read, he likes to_____, he likes to ______, he doesn't like_____. And that is perfectly Okay. Georgia needs to know that her differences add value to who she is. Perhaps she might not know all of her letters names, but she categorized them in your photo in some very "higher level" thinking. She organized according to shape. How very clever. How very wonderful. Labels /differences do not have to be negative.
As an educator, I can tell you the reality of schools world wide. Children who are "identified" as having differing needs, are the ones who receive the support that they rightfully should in order to faciliate their learning. Every child should be so lucky as to have an OT or PT to help them navigate sometimes, but the reality is, by identifying Georgia she will receive the support to address her needs as they change throughout her school years. And as such, as you wrote about having to fight for her assessments; you and Will need to be the driving force behind ensuring that these services are in place. And the needs and services will change as Georgia does.
My experience in the classroom has long been that the children who require support ( whether it be a 1:1 aide for a child with autism, or a once a week Speech Therapist) are accepted regardless of who they bring along with them. And in fact, sometimes,a peer session with the professionals can be a fantastic way of encouraging friendship and dispelling any mystery of where the child goes with Mrs. Jones. And instead of children thinking, " Oh, he/she has to go to the "speech room" as though it is something odd, they are asking if they might get to go sometime. More times than not, suggestions used to encourage speech, for example in one student can often be brought into the whole class say a circle time making that child sucessful and able to share what they have been working on.
Making the decision to have a child formally labelled is an intensely personal one. But allowing her to be identified as needing support and encouraging positive peer interactions within those scenerios, seems a lot less hurtful than having kids who tease or ignore her. Ignorance breeds contempt, while knowledge brings understanding and acceptance.
Good luck....and just so you know, Georgia is a very lucky little lady to have a mom and dad who so desperately love her and want her to succeed. Too many children, of all diversities are simply being shipped off to school to fill the 6 hour void during the day. She will do fine, whatever you decide. As will Alexander, and sweet Juliet.
Just having the underlying love, patience and willingness to hear each other out on these issues must be so very comforting. It WILL be fine - because both of you are doing such wonderful "work" on the issue.
Wow. When I first read this post, I didn't have much to say other than how well you expressed yourself. I don't have any experience with a special needs child but could see the truth and wisdom in what you were saying.
Sometimes I don't comment right away, I wait and come back to see if anything has bubbled up. But wow, what a series of great comments and support this post had brought. I can see the blog community coming around you to support you in such a meaningful way here.
Kudos to your readers who have such wise and wonderful things to say. And I'm sure you are going to give Georgia what she needs to succeed.
I'm so glad you entered this, I love reading good writing and getting to know new bloggers.
Very honest and insightful post. This is an issue that all of us struggle with.
Post a Comment