Special Needs

Considering a special needs adoptive placement

Hello!  My wife and I are foster/adoptive parents and came across a sibling set waiting to be adopted that we may consider.  I would like some input from the special needs community since one of the boys has a number of issues that we need to consider.

Here is the listing that explains his conditions.  I would appreciate any info/input you can give about any of the conditions and what we may be looking at in terms of caring for him.  We will also consult with our Dr. but people who know first hand are always a godsend.

Thank you!

Re: Considering a special needs adoptive placement

  • We're in the final stages of completing our adoption (18 months since our precious daughter came home). Lots of thoughts. . .

    We were able to find a local children's hospital that has an international adoption program. Even though DD was from right in our state, many of the things she'd been through and was dealing with "resembled a child from a Russian orphanage". They were able to get us in touch with a lot of different professionals with specific experience in adoption. If you can't find something like that, I'd start looking into which local doctors/providers are best known for the various specialties your son would need. More specifically, get in touch with your local early intervention as soon as you know he'll be coming home to you. They'll evaluate any child until the age of 3, but often have long waiting lists. After 3, you can contact the local school system for early childhood special ed. You can also seek out private feeding/speech/occupational/and physical therapists for evaluations. But really, in the beginning it'll be much easier if you can get all of those things in one place. Its overwhelming to enter the race and feel like you haven't had as much time as you should have. Try to pace yourself and lean on as many people as will help you. If you have a church, this is the time to ask for meals to be delivered. Things will be crazy. 

    If you decide to have this little boy join your family, you'll face a lot of decisions. Philosophical things about quality of life. Ie. How much to push for a g-tube wean and becoming oral, blended diets vs. formula diets, school placements with typically developing children vs. placements with other children who have special needs. These will be things that other parents have some-what more gradual exposure to. Some professionals will present them to you as if there is no real choice to make. This may compound with the stress of you and the professional "knowing" your child for the same length of time. Know that you are the parent and its always okay for you to take a step back and think about things. I'd suggest researching the wazoo out of all of your childrens' medical needs ahead of time. 

    With a g-tube, you may qualify for nursing. We qualify. If you think you'll want to use this, start looking and interviewing people as soon as you feel that its "really going to happen".  Ultimately, we decided nursing wasn't good for DD because of her attachment and the need for consistency. However, our doctor did help us arrange for a nurse to come several times and show us the ropes for g-tube, etc. Ask the family to show you how they do this. Whether or not they follow "protocol" it will give you a lot of insight to know how every thing is being done now. This is invaluable. 

    Other major things I wish somebody had told me. Social services greatly underestimated what was going on with DD. It wouldn't have changed our minds, but I wish we'd known from the beginning. Try to get access to the records before bringing him home so that you can put the correct measures into place. Also underestimated by social services, were the amount of attachment needs that DD had. These were compounded by her limited communication. Look into attachment therapists ahead of time that have experience with children who have been adopted. This will be invaluable. Even if its only a person to bounce questions off of from an attachment perspective. Along those lines, you may consider taking off a large amount of time in the beginning. I had to quit my job completely (I'd planned to finish my school year out part time) in order to make all of DDs appointment. With all of the transition issues for her it wouldn't have been right to leave her in day care. 

    Get whatever information you can from the current foster parents now. We spent so much time trying to make up for our lack of receiving this knowledge and DD paid the biggest price for that. Things like all doctors/therapists and latest notes from them, daily schedule, meal schedule, foods eaten by mouth, lists of any meds he's ever been on and what for, specific diagnoses and when they were diagnosed, any allergies, favorite toys, etc. It'd be great if you could sit in on a therapy session at one of your visitations. Things like how his sleeping arrangements are: bed/crib, pillow or not?, overnight g-tube?, all of that stuff will be important to replicate as much as possible in the beginning, even if you eventually plan to change some of it. We learned from our OT who specializes in sensory dysfunction and attachment disorder that often times children who are used to the smell of urine or feces can't fall asleep without that smell in the beginning and the proper protocol is to give this and wean overtime as not to shock them or startle them any more than necessary. Kind of an extreme example, but your really don't realized the gravity of these kids' lives until you've been there with them experience the worst of it. . . non-verbal or not, children will communicate their fears and experiences to you. 

    Assume nothing as fact. If SS tells you vision and hearing is fine, ask to see the report or get the exams yourself, have HIV and other testing done immediately. Your pediatrician should check each system and refer you to the correct specialists. Though, some may be overwhelmed and you'll have to drive that bus. We find a lot that b/c DDs history and system is so medically complex we end up having to remind dr.'s of vital pieces of info. 

    Finally, know that the most important thing you can do for this little boy is to love him and give him a stable family. 

    Feel free to ask any more questions and if you aren't on the "adoption" group you may consider wondering over. They're pretty great.  

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  • MG gave some great advice.

    My only advice is to not assume there is "nothing wrong" with the younger sibling. Even if this child was taken from the mother right after birth, there could be issues such as FAS or just general issues caused by malnutrition while in the womb. My kid is a wonderful baby, sleeps great and eats great but has a brain condition that can also be caused by FAS. If you didn't know about it. you wouldn't realize he was 'that' delayed until about 10 months to 1 year old. You may want to consider asking for a video and having it evaluated by a developmental pedi and make sure they do not see any red flags. My SIL adopted both of her children from Russia and this is standard practice. They had to turn down a placement of a little girl because the video had many red flags.

    Good Luck!

    WAY 2 Cool 4 School

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  • I've been a SAHM for the past 2 years and my DW brings in enough money for us to not have to worry, we aren't wealthy by any means but we are doing fine.  We are still researching the needs of this little boy and looking for a specialist to talk to so we will be better educated before making a decision.

    I appreciate everyone's responses, thank you!

  • I don't have a lot of time right now, but I just wanted to add, having TWO special needs children is so.much.harder.

    I have to constantly juggle whose appointments are 'more' important.  Morgan is doing 2x weekly PT and Peyton has 1x PT and ST & those combined with an average of 3 pedi/specialist appointments/week is killer.  When you throw in a cyst that needs drained or an ER visit it literally breaks me.  

    That being said, if we ever did adopt in the future (not looking so bright right now) I would WANT a special needs child.

    I sound like a contradiction, don't I?


    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

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