New to this board and a vent. — The Bump
Special Needs

New to this board and a vent.

I've been lurking for a while and I'm not even sure my child is "special needs." We don't have any diagnosis or anything but a little background on my ds.... Ds has been slow developmentally since birth. He did not crawl until 13 months or pull up to walking close to two. Now we are almost to 3 and he has limited vocabulary. He's been seeing a physical therapist , speech therapist, and special functions therapist since he was 9 months old. 

 

Ive watched all my friends kids the same age excel faster than normal developemently while my child was slow to do and learn new things. We are trying to see a behavioral therapist to rule out any behavioral diagnosis since his main issue right now is speech and communication.  My vent is that I feel like such a horrible mom most days. Ds cries and wines and acts out because of his lack of ability to communicate and I'm not a very payient person and I snap a lot at him. He's so clingy to me and it's nearly impossible to take him places or do anything fun without him acting like a complete nightmare. On top of all this I have a history of depression and an anxiety disorder. We are trying to conceive another btarts tarting this month and I'm so sad about it. I want to have another baby and sibling for ds but most days I'm terrified that I can't handle two with all of ds's demanding behaviors. Most days I'm so jealous of my friends kids who seem so happyand well behaved. In just really down about it all and don't feel like anyone gets it even my poor husband..... I'm hoping maybe some of y'all will be able to sympathize or understand what I'm going through?? Sorry if this is rambly....

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Re: New to this board and a vent.

  • I'm sorry you are having such a rough time. I understand what it's like to see other people's children reach milestones seemingly effortlessly while your own child struggles. It's hard.

    I know you didn't ask for advice about this, but have you considered putting off having another baby for awhile? You have a lot on your plate right now.

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  • My only advice is that maybe you want to consider getting a diagnosis before trying to have another child. It is possible that your son's issues have a genetic component. I already have a genetically unique child and would want to know the chances of another. 
    WAY 2 Cool 4 School


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  • image Anlo:

    I'm sorry you are having such a rough time. I understand what it's like to see other people's children reach milestones seemingly effortlessly while your own child struggles. It's hard.

    I know you didn't ask for advice about this, but have you considered putting off having another baby for awhile? You have a lot on your plate right now.

    This exactly. It sounds like both of you may not fully accept that your little guy does have special needs. Have you been to see a neurologist to get an understanding of what might be causing the gross motor delays and speech issues? My DS has both of those along with seizures, asthma, etc. We don't have a firm diagnosis, but an MRI of his brain did show some damage called PVL which does play into the issues somehow. We would love to have another baby, but with everything DS needs, and both of us working, we are waiting until DS is more independent. It will also hinge on whether or not there is something genetic going on. Have you looked into genetics at all?

    I know it is hard to see your little guy struggling and not have any idea what is going on. It is especially hard when they look typical, so people do not understand that they have delays. Do you take an antidepressant or get counseling? Both of those can be super-helpful. Hang in there!

     

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  • DS has a mutation on his x chromosome that causes intellectual disability, tone issues, microcephaly, and he is at risk for vision loss, hearing loss, seizures, and nystagmus.

    We did not TTC#2, a blessing in disguise and received DS's diagnosis the day after I found out I was pregnant.  Please consider holding off on TTC until you start to grieve your DS's issues.  It's hard enough going through all this special needs stuff but when you add pregnancy hormones and the fear of another child in the mix it's awful.  I've cried so much in the past 14 weeks and some for no reason at all.

    4 weeks after DS's diagnosis we got the news that I'm a carrier and Baby #2 has a 50/50 chance of having DS's mutation. Grief is a hard enough process to go through with minimal extraneous situations.  But add into that specialists, therapy, possible diagnoses, the fear of your LO's future, the exhaustion of everyday life, and THEN ADD the pregnancy exhaustion, morning sickness, hormones that fluctuate like a rollercoaster and it's downright unbearable at times.

    As PP have said have you sought a neurologist, development pedi, or a geneticist for your DS's issues?

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • Having two children with SN is no easy feat.  That alone can cause severe marriage strain (The big D has been the hot topic here).  We used fertility drugs for #1 and were using condoms to prevent #2, however something still happened, obviously.  I was already pregnant a few weeks before we got Peyton's diagnosis.

    Like PP said, it's a blessing in disguise because we most likely would not have TTC another biological child.  

    I constantly feel like I have to pick whose needs are important, etc.  If M was even a completely typical child, I would then feel like she was always left out.

    LOTS of emotions go into a second pregnancy when you already have a child with SN.  

    Have you seen a geneticist, or a developmental pediatrician?  Like Auntie stated, the developmental pedi, especially at age 3, with what you are describing would be a very good start.  And also probably a neurologist.

    Some dr's and family's go with the 'wait and see approach.'  "they'll talk when they're ready, etc"

    That's nice to be all puppy dogs and rainbows but I think people forget that somethings their ARE reasons other than just typical variation in development.

    Lastly, don't think that WE can tell you if you want another baby, then obviously that's your choice.  Just from my personal experience, of what 2 SN child has done to our life and our marriage.  It's hard to live at doctor's offices, etc.

    Either way, welcome, and please don't be afraid to post again! 

    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


  • Thank you for all the advice ladies. We are waiting to be seen by a developmental pediatrician to rule out anything behavioral. Our main issues right now are speech and communication. I have been on medication for my depression (which I've always had not just from stress of ds) and I am in the process of weaning off for this next pregnancy which could be the reason I'm feeling so badly. My psychiatrist warned me that the withdrawal would be kind of difficult . I think we may give it a few more months and see how ds progresses.

    We are also getting ds evaluated for a special needs preschool since when he turns 3 early intervention services will stop and the school system has to decide if he qualifies for additional services. I guess I just have good days and bad days with everything that is going on. I've been grieving over all this sonfor 2.5 years and maybe I'm not okay as okay with everything as I thought I was. I think time and how ds progresses will help me figure out the ttc another child issue. Thank you so much again for all the great advice and I look forward to posting more :) 

    "[URL=http://undomesticateddiva2.blogspot.com/]My Everything Blog[/URL]"

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  • image Southernfairyx:

    Thank you for all the advice ladies. We are waiting to be seen by a developmental pediatrician to rule out anything behavioral. Our main issues right now are speech and communication. I have been on medication for my depression (which I've always had not just from stress of ds) and I am in the process of weaning off for this next pregnancy which could be the reason I'm feeling so badly. My psychiatrist warned me that the withdrawal would be kind of difficult . I think we may give it a few more months and see how ds progresses.

    We are also getting ds evaluated for a special needs preschool since when he turns 3 early intervention services will stop and the school system has to decide if he qualifies for additional services. I guess I just have good days and bad days with everything that is going on. I've been grieving over all this sonfor 2.5 years and maybe I'm not okay as okay with everything as I thought I was. I think time and how ds progresses will help me figure out the ttc another child issue. Thank you so much again for all the great advice and I look forward to posting more :) 

    We got a diagnosis for DS at 16 months.  I will say, the grief process was amplified when we were in limbo. You nitpick everything they do for a sign that things are regressing.  We're on constant seizure watch (it's what they sent us to the NICU for and he's at high risk for them) so every little weird movement he makes, we have to analyze, and then I look at him and picture the worst for his future, and then I'd look for little signs of hope that nothing is really wrong. 

    Once we got our diagnosis it's a lot easier to get THROUGH the grief process instead of being trapped inside like a pinball machine.  We have a starting point.  Things are definitive.  His diagnosis is rare and there are very few studies, so we jsut hope he's on the milder end of the spectrum.  But it's like we expect the bad, the delays, the hours of therapy, but we can really appreciate and savor the positive.  All those milestones they said he would never do, the things that he keeps improving, the things he's shown he can learn.

    I would suggest calling your doctor regarding weaning your antidepressant.  Have you discussed switching to a different medication, or weaning even slower?  I know the withdrawal process is difficult but there are measures you and they can take to make it easier.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • I don't have experience with depression but I do have a child with global delays and no cause and I do understand how overwhelming it can feel.  My DD does have an older brother and a younger one.  We always knew we wanted 3 kids and we decided not to let our fears with our daughter impact that.  We know that having a younger sibling will be helpful to her in her learning and development and the drs are certain she has something genetic going on and something extremely rare.  If you can't take meds while pregnant, I'd make sure you are talking to your therapist on a regular basis.  What helped me a great deal in the beginning was finding support from people who know what I'm going through.  Some of that came through this board.  I also connected with several people in real life who have children with special needs.  Just knowing I have someone I can talk to about the silly details of therapies, insurance companies, good days/bad days etc.  makes a huge difference in my frame of mind.  I would definitely encourage you to seek that out.  Make sure you get some help for yourself when you need it - a babysitter or family member who can give you a break.  And hopefully your speech therapist is helping with other ways your DS can communicate using signs or pictures to help communicate his needs so that he doesn't get so frustrated.  We found that helps my daughter a lot.  Good luck!
  • I can relate to some of what you're going through. We have a nearly 4 year old with autism and a 1.5 year old who appears typical so far (have ocassional concerns). We want a 3rd in theory, but I also have depression and anxiety and do not look forward to being without Lexapro or, let's be honest, a nice glass of wine at the end of the day. So, we are in no hurry since I think there is plenty of time. I'd love to adopt, but DH is strongly opposed. Pregnancy while caring for any toddler sort of blows, but add in SN, and yep, frustration and impatience are an issue.
    Hope to see you around more.
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