However I was immediately thankful that the anonymous person had written in because for twenty seven days I've been turning over various autism posts that I've meant to write in my head, but this has been a month of rushing and hustling from place to place and at night I'm often to tired to write at all.
It's still April though, and this is one topic I don't want to miss writing about this month.
When I first started out as a parent I was certain I could do it all on my own (with Paul's help of course). There wasn't anything that life could throw at me that I couldn't handle.
I'd read those posts that still flitter through my Facebook feed daily that told horrible, stomach twisting stories about social workers and doctors seizing children from families, for no reason whatsoever, or maybe just because they were homeschoolers and I would shudder at what they'd gone through.
I have to admit that those stories made me less likely to ask for any kind of help and more likely to try to hold it altogether on my own.
And for a while I did. Sure Maggie was a handful at two, but I was sure she'd grow out of it. I mean, she didn't have any words, but Sadie didn't have any words at two either and she was talking non-stop by the time she turned four (albeit with major problems with enunciation that likely came from eighteen months of monthly ear infections that we took her to the doctor for over and over again).
By the time she was almost three though, alarm bells were going off in my head. Something wasn't "right." And try as I might I didn't seem to be able to help her.
I began to realize that whatever we were facing, whatever I needed to do to help her was beyond my capabilities at that moment.
She was still two when I filled out a form online and sent it in to Early On. We received a letter a month later saying that she was too close to her third birthday and we'd been referred to our school district for evaluation. That was two years ago. I have never received any assistance or help from our school district, despite reaching out to them.
I fretted that she'd done so well when we were at those meetings and evaluations there was no way that we were going to get help of any kind. She'd been on her best behavior.
They came back and told me that she was definitely "autistic" and at that point "more severely than other children on the spectrum her age."
Our lives were about to change dramatically and the idea of that change was very scary to me. I'd been used to being on my own with the kids, walking to parks and museums every single day of the week to make Paul's long hours at law school pass more quickly.
Suddenly we had therapy sessions six days a week.
But as I watched Mae with her therapists I realized that they could help her in ways that I couldn't (even though I was going through an intensive training program at the local university at the same time). And as time went by I also realized that they cared about her and wanted what was best for her and were willing to advocate for her just as I was.
Yesterday's commenter said: "Somebody has swallowed a heckuva lot of Kool-Aid to presume that doctors, nurses, evals, and specially-trained special education specialists are the only people to be trusted with the welfare of our children."
And I guess in a literal sense I agree with him. They aren't the only people to be trusted. But sometimes they are a crucial part of the puzzle.
Sometimes caring for your child involves the a humbling moment of realization that you need outside help and then taking the steps to ask for that help and advocate for exactly what your child needs.
I'm a huge supporter of seeking help early now. Catching problems early and getting help can mean far less therapy further down the road. That's why I had Patch evaluated for a speech delay and why I brought up my concerns about James having a gross motor delay. I know that Patch's one speech session a month (which involves training for me) is likely to save us lengthier, more frequent, and more expensive speech therapy sessions down the road.
I hope that getting James physical therapy now will mean that he starts hitting his milestones on time and doesn't need other sorts of help later on.
That's what early intervention is. It's help when kids are small that hopefully will mean they need less help dealing with certain problems in the future.
I've read many, many books. Most nights I save articles about speech or occupation therapy or sensory activities I can do to help my kids. But I've realized that my training still, at this point, falls short (someday if I have the time I would love to get a speech or OT degree) and I'm still not able to help her as much as her team of therapists can on a daily basis.
Being a parent means wearing a lot of hats. Sometimes one of those hats is advocate.
I advocate to get my daughter the help that I can't give her.
And I hope, Anonymous person on the other side of the computer, that if you're ever in a position where your child or grandchild needs that kind of help, you'd be willing to do the same.
If you're a parent out there who has a concern about your child not saying enough words or meeting milestones ask your doctor if they're worried too. If you have a gut feeling that there's a problem don't be afraid to push for answers.
Hearing a diagnosis can be hard, but it can also be the gateway to getting the sort of help that your child needs.
I cannot agree more! I've been reading your blog for a while now. I have twins that were born early due to an extremely complicated pregnancy. We saw early intervention about a month after being release from the NICU. We had some PT and were released. Down the road there were other delays, so back to early intervention we went. They are 3.5 now and have done and are currently getting ST, PT, OT and are in an integrated preschool since they were 2. This has made all the difference in the world. My husband and myself are both teachers, so we have the education background, but our twins would not even be close to were they are now without the help of our great team at EI.ReplyDelete
Your posts make me feel so much better, especially when you are honest and show the challenges that come with special needs children. We are not dealing with autism, but my daughter has childhood apraxia of speech and is severely speech delayed and my son has Dravet syndrome - a severe and intractable form of epilepsy. He has developmental delays at least partly from the antiseizure medication. We also experience elopement, speech delays, tantrums, and wondering if we'll ever make it through Mass again (my DH is the organist, so I have to be there early and wrangle the toddlers by myself).
I enjoy reading/ commiserating with you because 1. you're pretty close to me (hi from NW OH!) and 2. I don't have friends IRL that have special needs children so they have no idea what life is like for us.
(And the internet is full of opinionated trolls who feel comfortable armchair parenting from their virtual high horses, never mind how their actual kids turned out, or if then even had any. Soldier on.)
It really does take a village. Extended family, teachers, friends, Church, doctors, therapists... You just have to be choosy about the village! Not only can't we do it "all on our own" - it's not a good example for our children. They need to learn that while parents are primary, there are many important people in one's life. It makes life richer and healthier.ReplyDelete
Agree 100%. Parents are primary teachers, but that doesn't mean they are the ONLY teachers. I would be remiss (if not neglectful) if I didn't attend to my children's needs. Would we not get upset to learn that a child's dental care has been neglected? Do parents regularly keep the tools and are trained to fill in cavities, put on braces, etc? Getting help from professionals doesn't mean you hand your child over for them to be raised. It's simply acknowledging that they know more and can do more about certain needs.ReplyDelete
When my daughter was high school age and still being homeschooled, I used to joke that I wasn't the teacher, just the chauffer and coordinator. That wasn't strictly true,but there was a level on which it felt like I did more driving and arranging for someone else to teach than I taught myself. She could read, and so she learned a lot just out of books, she was taking a college chemistry class, she had a piano teacher, and a riding instructor, and my husband was the math teacher in the family. Yet, I was still very much the one in charge of how it all fit together, and I was the one making sure that all the pieces were in place. It took me awhile to realize that community college was a better place for high school science than my kitchen table, and despite the fact that my husband is an engineer, I'm really glad for the pre-calculus math college class that both my kids took. Both of those things freed me up from having to focus on things that aren't my strong suit and allowed me to really focus on the things that were. Your kids have specific needs that someone who's specialized in them can help meet far better than you can at the moment (because you aren't an OT, PT, or SLP). It sounds like you work well with them, and that you've got a great set-up- going overall. Don't worry about the trolls...ReplyDelete
It's also vitally important to have documentation of an early diagnosis to get school systems to HAVE to help, to HAVE to have an IEP that they follow. I can see how some people may see it as jumping through hoops, but those are the hoops we sometimes have to jump through in order for our kids to get the services we know are out there. but will be refused unless we have previous documentation that states that they, the new educator, HAS to follow through on. I wish all parents understood this, that they can have their children evaluated, even for just an inkling that something might be off. It could mean the difference between getting the services they need, and fighting the system tooth and nail.ReplyDelete
I could not agree more. AMEN!!! Yes, there are horror stories abounding on the net ... but there are so many many times when early intervention and help from others is just plain needed. I homeschooled, read everything there was to read - but I wasn't able to help my daughter learn to read when the problem was that her eyes weren't working correctly. A few months of vision therapy resulted in leaps and bounds of progress for her. Same with speech therapy. And when she had a psychotic breakdown from a severe medication reaction and was admitted to a mental hospital - I needed help in a huge way! And sometimes, even though others think I am horrid for saying this - the same therapy suggestions from some one else will be accepted by the child when they will block out mom saying it, especially as kids hit the teen years. Those hormones show themselves even though the child isn't ready mentally to deal with puberty. Oh, that I could have delayed puberty for awhile.....ReplyDelete
Those fortunate enough to have only typically developing children may simply not understand the difficulty faced by those of us whose children have issues of some kind.
I do agree. I am a bit envious of all the help you've been able to get. (well also happy for you) as we had nothing more than some blocks of speech therapy and I had to do whatever therapy I could come up with from books and on my own. (with dh) But that was 15 years ago and there is more available now. But yes; I do agree to take whatever is available. It may not all be the right fit but at least you can try it.and decide. The wait and see approach is overrated. I wish even back then I'd sought help sooner. (dd was 4 by the time we saw a Developmental Pediatrician)ReplyDelete
I think it's totally crazy that professionals are seen as the bad guys. It's taken me nearly 6 years to encourage a friend to get her daughter to see a councilor for emotional issues surrounding an absentee father that abandoned her. Any developmental delay or mental concern is so avoided, often to kids detriment.ReplyDelete
I worry when I see another hyped up story about a child that's been taken by the government for breathing funny. I assure you, except for a few egregious cases there is always more to the story. Often, it's custody issues like grandparents angry at the way their grand kids are being raised or a well-meaning teacher who makes a bad report. Or there are facts hidden by the parents from the media or even online. Take Alecia Pennington or other kids who've broken from fundamentalist families...they insist they never did anything improper even when proven wrong. Horror stories abound.
One of the things I find interesting is that my great grandmother was a nanny and she had this way of playing with "slow" babies. Years later (as in in her 90's) when speaking with a PT who came in to help her Down's syndrome charge she discovered nearly everything she did was part of therapy routines. We forget too quickly that we rely on professionals who not only make a difference but give some of the knowledge that elders brought o us in decades past.
Emma, you are so right! While my SIL isn't from decades past, she has a daughter with some of the same issues as mine, so she understands and gives me hope that things can get better in the years to come. The grandparents aren't too helpful though. Hubby and I had parents who only gave birth to typically developing, smart kids. Our issues with the kids are completely baffling to them.... as in starting with colic in child #1 LOL!! (lest I sound boastful in the above sentence - I'm not, I'm promise. Out of 6 kids between the families, I'm only one with ONLY a BS degree. Everyone else went on for even higher degrees) Anyhow, your story about your great grandmother was so interesting. They learned over time what helped with certain kids. Wouldn't it be fascinating for some OT or other student like that to be able to really talk to your great grandmother and use her experiences as part of a research paper?Delete
I think the pt who came to help my down's cousin was really impressed that she knew what she was doing. This, however, was still about 15 years ago, and my great grandmother has long since passed. But I see the role of professionals where we now lack the generational knowledge and social terms that made a difference to generations past. One could argue for many different diagnos' among turn of the century literature characters like Anne of Green Gables (ADHD) and Dorthy (not the movie version) and aspbergers. In this "fiction but drawn from life" we can see how cultural pressures (in Anne) and family structure (in Oz) each contributed to this person's journey into functionality. Even more so you can find the patience of the widow Douglas with Huck Finn as likely 1 on 1 therapy with a child with learning disabilities. I think much of this was lost in the 50's with the suburbinization of America...and much of the rest of the world, elders, family outside of a necular family became less important. Now we are using profesionals and science to fill that role and need.Delete