I’ve Got the Down Syndrome Blues.


We had Finn’s IFSP meeting this morning with our Regional Center service coordinator.  Although we dropped out of all therapies for Finn a while back, we agreed to keep Finn’s file open with Regional Center for case management, so they are still required to do an updated IFSP to assess where he’s at, determine what goals he’s met since the last IFSP, and set new goals.

Finn is two and a half now, so this was his final IFSP, and now begins the process of transitioning him to the responsibility of the school district.  Services from and responsibility of the Regional Center ends promptly the day before he turns three, and the school district takes over on his third birthday.

I’ve been absolutely dreading this IFSP meeting.  None of them have ever been especially positive or encouraging experiences – probably in large part because of my attitude towards Early Intervention as a whole.  So there was that, but also just the knowing that this is it, this is the point at which we begin transition, and I feel like my heart is breaking.

Why?  Why does this all hurt so much?  Why does it cause such knots in my stomach and tears in my eyes?  I’ve turned it over and over in my head, trying to get to the bottom of it, of my absolute angst over Early Intervention and what is coming up: Special Education.

Finn is my baby.  He’s my last baby in the nest, and I admit that I am having a hard time with the idea of letting go.  Having and taking care of babies has been my entire life for the last 8+ solid years, and the thought of my last one leaving my side – even if it’s just part-time preschool . . . well, it just undoes me.  Yeah, I’m one of those sickening moms who is probably going to develop a serious drinking problem and a reliance on heavy-duty antidepressants when all of her kids are grown and gone.  I mean, they bug the shit out of me, but they’re my whole life, you know?  So word to the wise: this is what happens when you immerse yourself so completely in motherhood that it becomes your entire identity.

Anyway, so there’s that.  And I have no doubt that I would be feeling this way with my last baby regardless of chromosomal makeup.  But then there is the element of Finn’s special chromosomal makeup.  Not only is he my baby, he really is just a baby.  He’s two and a half, but really more like your typical . . . one-year-old?  Eighteen-month old?  That’s still a baby in my book.  And I never dreamed of sending any of my other kids off to preschool that young (not that there’s anything wrong with it, it’s just not anything I’ve ever wanted for my kids).  But there is now going to be this big push to send him to developmental preschool . . . as soon as he turns three!  And I read all these other blogs by other parents of children with Down syndrome, and they’re all doing it, or have done it, sending their three-year-olds to preschool, and it’s so fun! and it’s so exciting! and they get to take the bus!  and isn’t that exciting?!?!  And I just feel like throwing up from anxiety.  I don’t want to send my three-year-old (who’s more like an eighteen-month-old) to preschool, and I certainly don’t want to stick him on a bus.  Why would I?  None of my other kids have taken the bus to school.

I hate that Finn’s whole life is supposed to follow this pre-mapped prescription.

From birth to three he will receive x, y, and z therapies.  Promptly at age three, he will begin attending developmental preschool.  Later, he may go to an inclusive, typical grade school, with an aide; however, if the powers-that-be determine that he can’t hack typical school, he’ll be warehoused in special education classrooms with all the other retards for the rest of his school career.  Maybe some day he’ll have a menial job and live in a group home.  And everyone will live happily ever after!  The end.

I feel like Finn has never been completely mine from the time he was born.  From the time he was just a few hours old and we had to take him to the ER and hand him over and watch them stick him full of tubes and hook him up to machines, it’s been like he doesn’t fully belong to us.  They have always had part “ownership” of him – first the NICU who had him for the first two weeks of his life and made almost every decision concerning his welfare and slapped our wrists when we tried to step in; then the social worker who told us we had to enroll him in Early Intervention if we wanted what was best for him; then Regional Center and its team of therapists who all have had their own ideas of how Finn should be managed; and now it will be the school district.  I feel like I’m being expected to relinquish his childhood to strangers who have no idea what it’s like to love this little boy so much that it feels like it could demolish me.  What do they know?  They don’t know anything about Finn or me or our family.  Nothing.  And they don’t care.  Finn is just another special needs kid, just another Downs kid, a file, a number, a set of problems to deal with, a set of goals to reach.

And yet . . . Finn is in the midst of a frustrating stage right now.  He yells and screams, a lot.  For long periods of time.  I don’t know if there is a physical cause (he might be cutting molars), or if it’s frustration on his part because he can’t communicate.  See, I don’t know, because he can’t communicate!  He throws things.  He’s suddenly refusing table foods and is back largely on purees (this could be another sign of teething, no?).  He’s made a lot of strides . . . but it’s very, very slow going.  And part of me wonders – of course I wonder! – maybe being in a more intensely therapeutic setting would give him just the push he needs?

Still, it feels like throwing him to the wolves.

A few weeks ago I was at the store and there happened to be a small group of adults with various disabilities there.  There was a woman in charge, and it was clear that this was some sort of day program and they were on some sort of outing.  The woman in charge was not nice.  I heard her admonish them repeatedly, as if they were wayward brats.  She said to one young woman in the group, “It’s not appropriate to ask people their names!  I’ve told you that!  That’s the third inappropriate thing you’ve done today!”  My blood was boiling.  I had Finn with me in a stroller, and I began following them from a distance.  I wanted to shout at the woman, “See my son here?  He’s one of them!  You can’t treat them like that!”

But see, that’s the thing.  I’m sure it gets frustrating and tiring for the people in charge of these “groups.”  And I’m sure they’re not always nice.  And I’m supposed to entrust my son to people I don’t know, on whom he doesn’t even have the ability to tattle on if they mistreat him?

Probably I’m being a little melodramatic.  But this feels HUGE to me.  I’m not ready.  I don’t know if Finn is ready.  All I know is that I want to protect him from all the bad in the world.

So back to our IFSP meeting this morning.  Since Finn has no therapists, our service coordinator did a questionnaire assessment.  She said she’ll plug the answers into this nifty computer program at her office and it will come up with scores for where Finn’s at cognitively and developmentally.  Nice.  Whatever.  So she’ll be setting up a meeting that will take place in April between her, us, and the school district psychologist to begin putting together Finn’s first IEP.  Blech.

I know nobody’s saying he has to start preschool tomorrow – or really even as soon as he turns three (although, clearly, there is an expectation that we will do that if we have his best interests at heart).  And I know that it’s probably silly to sit here and wring my hands before I even know what they’re going to suggest or offer us, or before we have an opportunity to physically go check out whatever they will offer us.  But still, I’m just really having a tough time with this.

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12 Comments on “I’ve Got the Down Syndrome Blues.”

  1. Jennifer Varanini Sanchez
    February 12, 2011 at 1:30 am #

    I am one of those moms who put my 3 year old darling on a bus this week and sent him off to a special day class but no one made me do it and I really feel like I looked at all different scenarios from keeping him home with me to going to a private preschool and everything in between and found that one of the 4 options that they happened to offer me at the transition meeting is absolutely perfect for us and for Joaquin. It is absolutely a VERY personal decision and my advice to you would be (knowing you a little bit and your stance on all of the interventions) to just keep him home and do whatever you did with our other children at Finn’s age. I think that was my biggest epiphany listening to Kathie Snow. Now that being said, I still wanted Joaquin getting help with speech and language and all my other kids started some form of “preschool” at this age usually with a lot of parental support. I did preschool co-ops with Diego and Mateo where the parents served as teachers along with the official preschool teachers so the ratio of adults to kids was close to 1:1 and there was a LOT of support for the kiddos and LOTS of love etc. So…when I found out that there was a preschool program for Joaquin that was speech and language intensive and had a 1:1 ratio it really fit in with what I would be doing with my other kids it just so happens that the teachers are specially trained to encourage speech and foster speech throughout the day. So….it worked for us. I was one of those people HORRIFIED by any parent who would put their THREE year old baby on a bus. How on earth?!?! And here I am and you know what….it’s hard but it turns out it’s working beautifully for us and bonus is the bus is CLEAN, SAFE, DARLING driver and the drive is 1.5 miles from home…so….the bus is his transition time and it’s working so well for HIM 🙂 So…I guess I would say keep an open mind, stay true to yourself and always try and put Finn first (which you ALWAYS do!!!) and I’m sure everything will come together. HUGS!!!!

  2. Cinoda
    February 12, 2011 at 7:28 pm #

    Not knowing where you live or what recources are at your disposal, try to find just one professional that you can build a trust relationship with. It will be hard to find this, since many professionals seem to treat us like numbers and not humans. If you can find just one professional that knows and understands your feelings maybe, just maybe you can find a solution that will work for you and Finn. I’ve never had a special needs child, but have witnessed the types of things that you have described, and I’d be damned if I would let my child be treated as such. My heart goes out to you, but don’t give up. There is a person who has the answers for you both.

  3. Asha
    February 12, 2011 at 7:40 pm #

    I’m sorry that your heart is heavy like that. You should be able to enjoy the rest of his babyhood entirely- tantrums and all…
    I feel similar about “letting go” of my kids when they are old enough to go to school.
    It’s like we lose them a little. They get influenced by others: teachers and peers.
    July is still a long ways away, just enjoy the now- try to push those frustrating thoughts away?
    Big hugs

  4. EM
    February 14, 2011 at 12:21 am #

    So as someone who has worked various position in social services, I want to reassure you that the vast majority of us in “helping” profession DO actually care a lot about the families we work with. I’m very sorry your therapists and workers haven’t shown that to you. I can’t think of anyone that I have worked with in the last 15 years who didn’t give a shit about their client. I totally get that your experience has been rough but we really do care. I would loose sleep at night thinking about my clients. I always wanted the best for them. I just wanted to say that because it makes me sad when people gave the assumption that it’s just a job. Most people don’t become therapists and social workers because it’s an easy job. It’s hard as hell. And it’s job where you don’t get enough thanks and rarely get to see the benefit of your hard work. The results come later, especially when working with kids.

    And as far as the rude lady in the store, she was rude for sure. But who knows what had happened that day. I have lost pacience with a group of unruly teens and I would hope no one took a snap shot of that and used it as the bar for which all social workers are measured. Just as when you loose patience with your kids at a store and domeone gives you an evil look. Sometimes it just happens….. And it could be that she’s horrible- but I don’t think that’s the standard.

    • Lisa
      February 14, 2011 at 12:35 am #

      EM, I don’t believe that all therapists and social workers are horrible, or even that our therapists have been horrible. I just don’t believe that for us- for our family and our child – that early intervention has been everything it is cracked up to be. All the therapists we’ve had have been passionate about their work and for the most part, kind to us. However, none of them are themselves the parent of a child with Down syndrome. I wonder if you are. Of course I am emotional about this. This is my child we’re talking about, not a client.

  5. EM
    February 14, 2011 at 1:34 am #

    Oh don’t get me wrong! I do not have a child with DS, nor do I claim that I know what that’s like. I was only speaking to the part where you said that no one cares- he’s just a file. I agree that EI isn’t always what’s best and I agree that you, as the mother, are absolutely qualified to give your son what he needs. I’m not arguing that point at all. I’m glad that you saw passionate people doing their work because that IS the point I’m trying to make. People do care and they do want to know your son and do whats best for him, even if at times it doesn’t feel like that.

    • Lisa
      February 14, 2011 at 4:52 pm #

      Something about this rubs me the wrong way. You’ve done a good job of defending your profession, but not so much at empathizing with how it must feel for the families you work with. I’m curious what drew you to this blog in the first place if you aren’t a parent of a child with special needs. Out of that entire post in which I expressed my personal struggles as a parent, you seem to have only picked up on what appears to you to be negative comments about your profession.

  6. americanauslander
    February 14, 2011 at 1:43 pm #

    I know exactly how you feel about these assessments. My son is now 5 1/2 and I get twisted in knots each time we have one. I always want to shout that each child is unique and he has many other talents that they do not test. Now, I take a more positive approach and use these times to help me focus on where I need to help him develop his skills. It has made the sessions more tolerable.
    Though my son has always had trouble using words to communicate, he has always expressed himself through his actions, some sign language, and his heart.
    We have been blessed to find an excellent private speech therapist who has been working with him for almost 3 years. She has helped me learn different ‘work around’ methods to help him find different paths to words. Through play and movement he communicates more clearly.
    Keep positive for Finn!

  7. Stacey
    February 14, 2011 at 6:04 pm #

    The tantrums & throwing could be anything (my 18-month-old boy has recently started doing both) but the refusing solids strikes me as either teething or a sore throat. We’ve been passing a virus around our family that starts with an intensely sore throat, then moves to a mild fever, then a runny nose, and that’s about it. We’ve all had it twice, and it seems that Tiven might have it yet again. I’d try giving Finn some homeopathic teething pellets (or the quick-melt strips if he won’t take a pellet) they can’t hurt & might help, I swear by them for teething relief! And maybe see if you can get a peek at his throat & give him some Motrin or Tylenol if it’s irritated.

    And have you ever tried signing with him? I’m a huge fan of signing with baby, it gives them a way to communicate when they can’t form verbal language. Tiven didn’t talk until she was about 2, but she was able to use signs to communicate her needs. Weston is already talking up a storm, but he still uses signs for words he can’t say yet. And to sign, “more,” when his mouth is still full, LOL! Here’s my favorite signing website:
    http://www.signwithme.com/002_browse_signs.asp

  8. Heather
    February 15, 2011 at 7:44 pm #

    Hi There, I am so sorry that you had a bad experience with early intervention and therapy sessions. I do not know where you live, so I don’t know how it works in your state. I live in Columbus, Ohio and my son (who is 21 months old) received home services from the county. His team was great and very committed to my son. My son now goes to an Early Intervention school in downtown Columbus. He only goes 2 days a week for 2.5 hours each. They are fantastic! They have therapists in each classroom, so he gets extra help while he is at school. He is getting socialized and just loves it. He does not have county home services anymore because once he goes to a center based school, they take him out of home services. By the way, this center based school can be one from your state or a private one. We go to a private one, but they are free. They are non profit and all money comes from donations.

    I also want to comment that we just started up again private therapy at Nationwide Children’s Hospital in Columbus, Ohio. Alex is not walking yet, so we started up PT and he is also just started Speech. Speech is very important to us now because he really wants to communicate with us. I already had some “Signing Times” DVDs so that I know how to use sign language and can teach him some signs regardless of therapy. We’ve been doing that since he was about 12 months old. He’s saying some words and signing others. All therapists that my son has at Nationwide are fantastic and really care about Alex. We have started some OT with Nationwide as well b/c Alex is doing what your son is doing. He doesn’t want to eat table food and only eats baby food. I’ve talked to several therapists and they think he is asserting his independence. I also think he is teething and he does have congestion problems. Feeding has always been a bit of a challenge for us, but that was largely due to his hole in his heart (which he finally got fixed at 12 months old). But, it’s definitely been a frustration for us and continues to be.

    Anyway, I also want to let you know that all of these services that my son is getting is free (school is also free), home based services were free and his private therapy is included in our insurance (we get a certain amount of therapy sessions a year included in our insurance premium). So, I am not shelling out all of this money. I am only using everthing that we have to use to help my son.

    I think therapy is very important b/c if you have the right therapist, you will enjoy it and so will your son. I took recommendations from several people and therapists to get in to see the right people our son. I think that if you get the right therapist(s) you will really see the benefit.

    Now, do I think you need to go all of the time? No. But, you’ll know when you need to pick up the pace for him. For our son, he really is at a point where he needs to communicate. He wants to, but can’t. I feel that for me and my son (his family, friends, etc.) that we need to do him a service and help him learn sign language, help him learn how to make sounds, etc. so that you can help alleviate the frustration. And it sounds like you are frustrated that is for sure.

    Believe me, I have been to hell and back (and sometimes back again) with trying to deal with everything with my son. But, I really think that if you try again and try and make sure you get him into the right therapists, you will see the benefits. And what I have found is that it actually gives me therapy (mentally) because I’m taking my child to someone who cares and who knows how to help us. And, they care about you too.

    Hang in there. Don’t give up. We all do at times, but we get past it. You are an amazing wife and mother. You are dealing with a lot. But, I do think that if you get the right help, you’ll feel so much better!

    Take Care and please keep us updated!

    Heather

  9. Alyson
    February 15, 2011 at 8:20 pm #

    Well Lisa I went through the same scenario with Cullen this past Fall. While I know Down Syndrome is different from Autism, our boys both have ” disabilities” and I get where you are coming from. I have had a different experience as far as home therapy goes but we did have to make the big decision last year whether or not to send Cullen to a preschool program. I made myself absolutely insane trying to decide. I fought tooth and nail to get him into a highly recommended preschool for kids with disabilities. Yet I really didn’t know if I would send him but knew I wanted the option. Just from talking to the director of his school I knew they cared and really knew what they were talking about. She took so much time just talking to me about Cullen. Yet I went to the open house 2 weeks before school was to start and had a near nervous breakdown when I got home. We decided to try it. My theory was if it just wasn’t working out in a month I could take him out. I declined transportation and drive him the 28 miles each way.
    I cannot really express to you how good this has been for Cullen. Now I am faced with having to transition him into a school aged program in September b/c he will be 5 Nov 7th and NY sucks;) Anyway I really wish Cullen could have gotten 2 years at his program. Though he was 3 yrs 10 mos when he started he was at not quite at a 2 yr old level so I understand the ” baby” thing.

  10. Wren
    February 18, 2011 at 5:10 am #

    I followed your other blog and came to check in and see how things were going with you and Finn. I’m on your side when it comes to EI and have often times thought of ditching the entire program! Our PT comes once a month to “check in” and our DT is suppose to come once a week, but we are lucky to see her twice a month….she always seems to be sick or it’s a holiday…. convenient! Either way it seems like a waste of time scheduling things around certain days only to find out that day that plans have been canceled or will need to be rescheduled. At this point I feel like anything Sutter is doing or accomplishing is due to his home environment and has NOTHING to do with and EI services we are receiving. I can also say that when Sutter turns three….even though it’s two years away….I will not be putting him on a bus and sending him to school. He may go to school for a couple of hours a couple of days a week, but I will drive him to and from just like I would Landon (my oldest).

    Anyway, just wanted to stop in and see how things were going. Finn is absolutely a love bug and reminds me a lot of my boys.

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